Journal

Golf wrap up and more.

Written September 20, 2014 1:01 pm
We just had our Brooke Healey Foundation Golf wrap up meeting and can’t be any more excited and proud over what a tremendous day it turned out to be. Our partnership with Sal Pignio and Marriott Hotels along with tournament sponsor Steve Oliver and Manhattan Ridge Advisors really brought us to another level. Stefani and I would like to thank them, the golfers, the BHF board members, volunteers, sponsors, and all who donated goods and services to the cause. Without all mentioned above it truly could not be the event it turned out to be. We raised a lot of money that will benefit families going through similar struggles as we have, raise much needed funds for research, and award scholarships to local seniors civically involved with their community. Please visit the “Who we have helped” page on our website to read more.

At our wrap up meeting we discussed ways to improve our event for next year. Believe it or not we actually have a list of ways we can make the event an even greater success. Every golfer I spoke to expressed interest in returning and many who were unable to attend claimed they were coming next year. Clearly, the steak station and watermelon-infused drinks served on hole 1 by Bridgewater Marriott were a big hit. As were the vodka-infused lemon ices Zita’s Homemade Ice Cream gave away on hole 10. So, we discussed having two more stations next year. Meaning there would be two on each of the 9 holes, two on the front nine and two on the back nine. Just a little hint for you early birds, there may be a Bloody Mary station to kick off the day next year.

It was such an extraordinary event thanks to so many. Our support from our sponsors was tremendous and they really shined and helped to put us over the top in making it such a high quality affair. The bag drop boys told us we shattered a course record at New Jersey National with sponsor signs. We had at least 6 sponsor signs at all eighteen holes. They said the most they have ever seen was 2-3 signs per hole and those were at events that have been running for 5-10 years.

Sean Toohey, the course pro, said he has never seen a 1st Annual golf outing run so smoothly with so much support and participation. He couldn’t believe the turn out for an August event. He also said our event ran much smoother than many of his corporate events that have been in existence for years. We heard so much positive feedback from all in attendance it was overwhelming. Many golfers raved to our committee it was one of the best, if not the best outing they have ever been a part of. All of this positive feedback got the foundation and committee so excited, we have been talking for weeks how we are going to step up our game. You will not want to miss next year!

The BHF has been so busy lately with things like attending the New Providence street fair and other outlets to build awareness. Stef and I are taking the kids to Washington DC this weekend for the Curefest for childhood cancer. We will have a booth set up to help publicize The Brooke Healey Foundation and promote awareness. We will also take part in the candlelight vigil on the front lawn of the White House.

We are also very excited to announce a fundraiser taking place on October 26 to benefit Lucas Reiling, a New Providence boy battling brain stem and spinal tumors for over 6 years now. There is so much information surrounding this event that we will send out a newsletter in the coming weeks. In short we will host the “March a Mile with Lucas” Halloween parade right here in New Providence. Hopefully Lucas feels up to it, but we are going to March behind Lucas in his adaptive trike the Brooke Healey Foundation purchased for him. Here is a video of Lucas riding his bike.

Hope to see you all soon!

Thanks for your continued support!

Steve

A couple of updates.

Written June 21, 2014 10:53 am
Last night Casey Rust and I went to the “Love for Lilly” golf outing dinner. Lilly Anderson is 5 year girl from Wayne NJ diagnosed with a DIPG. We made a donation and sponsored the cocktail hour.

Stef stayed home and hosted a Stella and Dot party that Shari, one of our Bikers 4 Brooke vendors coordinated. The proceeds will go toward a raffle item at our Golf Outing.

This afternoon, Lauryn and Mike Shapiro are having their yard sale at 66 West 4th street in New Providence. The proceeds are going to the Brooke Healey Foundation and Love for Lucas.

Tonight, Alexis Cardwell will have her Caberet performance where she will be donating proceeds to The Brooke Healey Foundation.

 

Bikers4Brooke wrap up and what’s planned next.

Written June 13, 2014 10:42 pm
The Bikers 4 Brooke was another huge success. We had a about 185 bikers this year which is down from last year’s total of about 200-225. My focus is going to be trying to improve the number of riders from one year to the next. The committee talked and is considering moving the event to a Sunday to allow more working guys who ride the opportunity to come. We have some other ideas too, but too early to get into all those details.

We do however want to thank everyone involved. The amount of dedication we get from our friends is overwhelming. Sandy and Alissa put in ridiculous amounts of time and coordinate the help from everyone else. As always I can’t name everyone and there is probably no way I can remember to even mention everyone. The best part of having everyone involved is there are no egos. No one seeks recognition and is happy to help in any way they can. I think that is why Stef and I are so taken back.

There is one sad story associated with our event this year. Forest Hendrix, our BBQ man, passed away Sunday night. We came into contact with Forest last year when he heard about Brooke and her story. He said to me, “When I saw the picture of your little girl I wanted to get involved. I will be here each and every year to volunteer my time to you and your family.” You could see and feel the sincerity in his eyes and heart when he talked to you. Forest did come last year and this year completely free of charge. He brought all of his cooking equipment, including smokers, trailers, grills, coolers, and a crew of friends to work their asses off to help feed the Bikers and families. Forest and friends came as early as 6am and stayed until about 7pm. They also spent hours the previous day prepping all the food for the next day. Forest and his legion Post 261 made a donation to B4B this year. There were many Post 261 members there to support us as well. Services for Forest are at the American Legion Post this Sunday at 4pm with a repast to follow. Forest had a heart of gold and will be sorely missed.

Many of you only saw Guido and his crew where the food was being plated. They too obviously work their butts off and put in tremendous amounts of time and get much of the food donated. To quote Guido: “Forest is a huge help, I don’t know how we would have handled this without him.” I will leave you with one quote from Forest himself. I hope I get it right, but you will get the idea of the the type of guy he was. Now picture Forest (larger than life) with his southern drawl. “I don’t cook hamburgers and hotdogs. You people up north think that’s Bar-B-Que, I will show you real Bar-B-Que. If it walks, crawls, runs, or flies, I can cook it.” AND THAT HE DID!

Please check out the updated page “Who we have  Helped“.

One last word to the wise. The golf outing is filling up quick. We recently made some corporate connections that plan to scoop up the remaining spots. We would love nothing more than to have all our family and friends involved, but we can only accommodate 27 foursomes. There are about 12 left and it is a first come first serve basis, so please, if you have interest, sign up ASAP.

Thanks,

Steve

below is a facebook message from Stef I would like to include.

I came across an article this week, and as I read it, I felt as if there was a knife that just went straight through me. The author was making a point that bereaved parents who start foundations in their child’s name, specifically right after the child’s death, are trying to avoid grieving. Well, yes. I am trying to avoid grieving. I grieve, believe me. I am not sure what the right way to grieve is, so if I can channel that horrible, indescribable feeling into something else, I will.

We have had so many great things happen recently that have come out of the most devastating situation. We presented two scholarships to students at our alma mater, New Providence High School. There were five families there who presented scholarships in honor of children that they lost. It was very emotional. We had Bikers For Brooke, which was a great success. It was overwhelming actually. I know the point is to raise money and awareness. And my focus will be more on that part of it, I am sure, soon enough. But for now, to get me through the day, it is about the support for our family, and for Brooke, and for kids and families who are struggling now. It means so much to me to see people there, participating, or donating, emailing, calling, or writing in support if they can’t make the actual event.

Our friends and family who plan and organize this event are more special to me then they could ever imagine. The time they spend on this, and with us during the process is like medicine for me. They will never know how much it means to me. I can’t and don’t really tell them, it’s too difficult. It is also difficult for me to speak with everyone who was there that day. I want to let you all know that if I didn’t speak with you at Bikers, I am sorry. I would have really liked to spend more time with everyone. There were so many volunteers that did so much to make that day possible.  I hope you all know how much it is appreciated.

We will do great things with this foundation because of all of you. Our next big event will be the 1st annual Brooke Healey Golf Outing on August 25th. We are so lucky to have these people in our lives. There are too many kids diagnosed with brain tumors. It is unimaginable what these kids and families go through. There is only so much doctors can do, especially for DIPG. They need more help and support. We need to keep going to make that happen. Thank you so much for continuing to be a part of this journey with us.

Stef

Bikers4Brooke 11 short days away.

Written May 27, 2014 12:13 am
The route and schedule of events are finalized. We have been promoting and expect a larger turn out than last year. There many “cheering sections” along the route, including New Providence residents and students on the front lawn of OLP church, Madison residents and students on the front lawn of Madison HS, Elefante music, and others. Feel free to join any of these locations as well as create your own anywhere along our route.

I hope to see you all on the 7th!

Steve

Brooke in the news and B4B on top of us.

Written May 2, 2014 12:35 pm
Brooke makes the news in this Daily News article when Abigail Breslin donates $10,000 in her name.

We are currently looking for Vendor and Sponsors for the B4B event. As you can see by the countdown we are a little over 1 month away. Please click on the Vendor link above or visit the dropdown for details.

The website is almost fully up to speed. there are always minor tweaks to be made, but most of the content is where we want it.  Again, I think I fixed the message board so if anyone wants to test it out feel free. I can’t be sure until someone posts. If you do post and it does not appear, please contact me to let me know.

Lastly, we are updating our email list and will use that instead of the Caringbridge alert hopefully as soon as the next time I post. Once we have that piece in place, we will run a test to see if you received the alert via email. If not, you can sign up on the right hand tool bar. that is up and running.

Thanks everyone! See you at B4B June 7th!

Steve

 

The new site is shaping up and a few updates.

Written April 8, 2014 10:45 am
Still working on fine tuning, but I think it is starting to come along nicely. Just a reminder about the Lax Fundraiser mentioned in an earlier post. You can scroll down or there is an article with some details. Stef and I are going to bring the kids in the afternoon. I think we are being called to the field at halftime of the Oratory game.

I think the guestbook is up and running, but I will need someone to post to figure that out. I still need to add some older archives as well.

Alexis Cardwell is also holding a fundraiser. See her cabaret flyer for details.

The Bikers 4 Brooke committee is doing a bang up job as expexted. We are in the process of finalizing some sponsors, but we are excited and ready to go.

The Golf Outing committee is also off to a great start. We already have some sponsorships as well as foursomes locked up. There will be more details to follow for both.

Steve

New web design is up and running and Fund Raising events are in full swing!

Written March 24, 2014 5:14 pm
It has been almost a month since I last posted. I have had much information to update, but didn’t want to keep transferring data from one site template to another. We still have some tweaking to do as well as add a few more components, but we are able to do some much more with this new template. Some things we will be working on in the near future are our guestbook entries and your ability to post, our alert system so we don’t have to use Carringbridge anymore, some of the basic design with our tabs and drop downs, and our photos. If you have time, please fish around and get familiar with the new design and layout. There is new and updated material on almost every page, especially under the fundraising & events tabs and drop downs.

So three very important updates, both signature events are deep into the planning process and ready for sponsorships and participants. Each can be seen under the fundraising & events tab. The third is a local fund raiser at a lacrosse tournament. The flyer can be seen below this post. Kevin Donnelly, uncle to Juliana, is the Oratory Lax coach and partnered with Summit Lax coach, Jim Davidson to create an awareness day and fund raiser. If you can stop by, there will be some high level lacrosse games between some great area youth and High Schools teams as they face teams from Pennsylvania and Massachusetts.

The feeling is that the golf outing is going to fill up quickly. There is room for 108 golfers (27 foursomes) and roughly 100 dinner guests. We will have to cut it off at that point. So needless to say, it is a first come first serve basis. I know its early, but don’t get shut out! Registration is for full foursomes only at this time. Depending on available space we may or may not take on singles and doubles.

Sponsorship for both the golf outing and the Bikers for Brooke event are needed. We appreciate anyone willing to sponsor or help us find sponsors for these events. Sponsor information and contacts can be found on each of the respective pages.

Stef, Ashton, Bryn, and Seamus are all doing well. We are excited at the prospect of getting outside to play in the SUN soon.

Steve

 

LAX Fundraiser in honor of Brooke and Juliana to promote DIPG awareness.

LAX Fundraiser in honor of Brooke and Juliana to promote DIPG awareness.

StickIt DIPG flyer jpeg2

Home again!

Written February 25, 2014 11:06 am
Last night the bilirubin count was 10.2 and this morning his count was 10.2 again. They sent us home with the theory that he is a few days older and the Liver is functioning better each day. We still need to get him checked tomorrow at the pediatrician and probably again the following day.

The only way we would have to return to the hospital once agin is if his level climbed into the teens. They may rise a little, but as he needs to start excreting the cells faster than he produces them. Once we hit that plateau, we are home free (pun intended).

Steve

Aways famous Seamus.

Written February 24, 2014 11:36 am
Seamus’s last three bilirubin counts were 11.8, 11.2, and 10.2 this morning. Still dropping, but not as fast as the doctors would like to send him home. We are definitely staying over tonight and keeping him under the ultra violet lights until morning. The theory is that the lights are what have brought the levels down this far and his liver has not been totally functioning at the level it needs to yet.

Usually these premature babies have peek bilirubin levels at day 5 and today is day 6 for Seamus. The plan moving forward is to keep him under the lights until morning and check his level at 6am. The prediction is that it should be in the 8 point something range. If that is true, we head home and have a couple of follow up appointments with his pediatrician the following days to check the levels again.

Also there is another Reflections update.

Steve

There is always drama.

Written February 23, 2014 1:44 pm
When we were released on Thursday his bilirubin level was 9, a little high, but reasonable for a premature baby. They were checking every12 hours. Prior to the one before we left it was in the 6 range twice. To be precautionary we were asked to get it checked with our pediatrician the following morning.

A little background, in case this is tough to follow. Premature babies are subject to jaundice because they have immature liver development. The liver filters all the red blood cells and tags the ones that need to be expelled. Since the liver is immature it cannot tag all of the cells that pass through and the ones with pigment go back into the blood stream. This is also why older people have yellowish skin when having liver issues. Seamus was also Coombs positive, which means he has a different blood type from Stef. He now has some of Stef’s blood in his stream from the umbilical cord that needs to be tagged and expelled.

Although he looked good and was eating, peeing and pooping as expected, his level rose to 15. We were again advised to have it checked the following day, Saturday. Eating, Peeing, and pooping is necessary to expel the unwanted cells.

I brought him in again to the pediatrician, and again he looked great was eating, peeing, and pooping regularly. We took the blood test and were going to be called later with the results.

Everything seemed fine. I went home and took Ashton over to District 10 to see the wrestling semifinals. We sat down and got settled and watched one match before getting the phone call from Stef. “We need to get him to the NICU as soon as possible!” I grabbed Ashton and rushed out the door. I called Stef on the way home and found out his bilirubin level was at 18. It definitely shouldn’t be climbing, but 20 and above is considered dangerous. If sustained levels above 20 are present there is a risk of brain damage and mental retardation. We already had the discussion that the molecules are small enough to cross the blood brain barrier. I immediately jump in with, Brooke was jaundice for over 6 days with levels ranging between 15-19. I was informed that it would not create the tumor she had but rather something more along the line of brain damage, which clearly she did not have. Anyway, I was still questioning if the molecules could have contributed to the growth of the tumor in some way. Who knows if it could have triggered something.

So we rush him to the hospital and get him to the NICU. Stef breaks down from all the emotion surfacing and the nurses assure not to worry too much and that everything should work out fine, especially since they have him under their care and can control the situation. Stef explains why this is so traumatic for us. Now everyone in the room is about to cry. They assure us everything will be fine and get Seamus under the Photo-Therapy lights. They help to absorb the unwanted cells. Since being back at the hospital his levels have dropped from18 to 16 to 14 and down to 11 this morning. They also started reducing the amount of light exposure because they feel he is catching up on his own. They will check him again tonight and if he is the same or better they will remove the lights and check him again in the morning, If his bilirubin levels are better or even the same with no lights we go home (again)!

So, as usual, tons of drama and emotion, but we all should be home and back to whatever normal is tomorrow (Monday).

Steve

Here comes Seamus!
seamus
Written February 17, 2014 11:22 pm
Stef came home and was tired. She laid down to rest and started contracting. We went to the hospital and the contractions intensified. It looks like he will come after midnight and share a Birthday with Micelle Davis. It’s amazing that Michelle has 4 kids out of high school and will be exactly 30 years older than Seamus. Happy 30th Michelle!

Also, Aunt Michele Stivalo has something I just posted on the Reflections page.

I will post again when Seamus joins us.

Steve

The BROOKE HEALEY FOUNDATION updates.

Written February 14, 2014 1:22 pm
1st of all, Happy Valentine’s Day. We have some interesting updates and whole bunch of info on upcoming functions.

Stef is doing fairly well with the pregnancy. She does have contractions every so often, but that is not unusual for her. We have only made one trip to the hospital and that was largely in part to being so dehydrated from that awful flu strain that ran around a few weeks back. The dehydration caused her to contract. We had at least half a dozen trips with Brooke before she finally arrived. We expect Seamus Brooke Healey to be here any day from now until the due date of March 20th. Bryn was born right around today’s date with respect to her due date. Realistically, I think we have 2-3 weeks.

Both functions in 2014 have dates attached to them as of this morning. The 2nd annual Bikers for Brooke run will be Saturday June 7th and the 1st annual Brooke Healey Foundation golf outing will Monday, August 25th at NJ NATIONAL golf club in Basking Ridge, NJ. More details will come soon as we have our first B4B meeting this tuesday and Sal Pignio, Casey Rust, and I have already had one meeting and finally picked a venue this morning for the golf outing. We are going to meet a few times in the next few weeks to start organizing more specific details. If you are interested in volunteering for either shoot me an email at help4Brooke Healey@gmail.com.

For the golf outing, we will need registration, 50/50, set up/clean up people for the day of the event. In the immediate future, people to make calls to gain “Hole Sponsors”, “Cart Sponsors” and other donated goods. There are many more jobs we will need filled as we get closer to the date.

One last order of business. This site will undergo a complete restoration in the coming weeks. As you can see I have have changed the template once again and changed the site name. This too will be be changed once more in the upcoming weeks. We are trying to streamline this page as the primary site for the Brooke Healey Foundation, but don’t want to lose any valuable info at the same time. Mark “CAPO” Caporelli is heading the website overhaul and has some great ideas of how we present this site. One thing we did add in the meantime is a new page called “REFLECTIONS OF BROOKE”. We recently received a letter from Kelly McKeown, one of Brooke’s summer camp counselors, and felt we had to share it. As you will see when you navigate to this page, we invite anyone who wishes to share a Brooke story or letter to please send it to us. We would love to post it for all to share!

Thanks,

Steve

BROOKE HEALEY FOUNDATION Meeting.

Written January 26, 2014 8:45 pm
We held the first official Brooke Healey Foundation meeting tonight and have a lot of things to work on moving forward. 9 of our 10 member Board met at our house tonight. Barbie was unable to attend because of the unexpected passing of her father-in-law. Our thoughts go out to Barbie, Greg and family.

Stef and I have been dragging our feet for a variety of reasons, but we finally made strides to move forward. Our 501c3 is almost complete. We will be mailing our final application this week. We already have received our tax ID # for receipt purposes of funds raised. Our mission statement is not totally complete but the basis of the foundation is to help children with pediatric cancers, DIPG research, and scholarships to local college bound students.

Thanks to Michele, Al, Donny, Sandy, Sean, Paula, and Alyssa for joining our Board and willingness to put their valuable time into our foundation. Thanks to Sal for getting involved with the running of our 1st annual golf outing. Want to be a part of the Foundation? Don’t worry, we will be looking for volunteers to help run our three main fund raisers. We are targeting April for our 5k family fun run. This probably not kick off until 2015. June will be the annual Biker run followed by family picnic. Exact date will be announced shortly. September will be our 1st annual Golf outing and awards dinner. Again, exact date will be announced shortly.

This website will be overhauled and the main website for anything involving Brooke or the foundation. For the purposes of streamlining and organization, we will most likely be bringing the Bikers for Brooke website over hear as a separate page under our fundraising efforts. Stef has already stated updating the facebook page. We ask that if you are not already a member of Team Brooke (Healey) facebook page (hopefully soon to be called BROOKE HEALEY FOUNDATION, please join us. This website and that facebook page will be our primary sources for spreading information. For now, I will still be using the caringbridge site to send alerts about updates on this page. We are looking into another method of alerting everyone about website updates. Possibly “constant contact” or something of that nature. Anyone have any insight, fire away. I would like to separate ourselves from caringbridge if we can.

Stef’s pregnancy is going well. She is due March 20th, but is convinced she will go early. All three of her pregnancies were early. The triplets came at 21 weeks, Brooke was 3 weeks early and Bryn was 5 weeks early. Ashton and Bryn talk about Brooke all the time. They both slept in her room (Ashton in her bed) up until last week when we reorganized all the rooms to make room for the baby. It’s a boy if you were not aware. I will update that info on here as it develops as well. I really had no interest in posting after Brooke passed, but now that I am on here, I feel like there is so much to update. I have to wonder if you guys still get these alerts and this is still an effective method of reaching everyone. Now that we have some direction and things are moving forward, time will tell or we we build it back up.

More to come soon!

Steve

Brooketoberfest!

Written October 23, 2013 9:56 pm
This Saturday is the big event. We have just over half our tickets sold. We will accepting walk ins at the door with cash or check. There will be one lucky winner going home with a flat screen TV as a door prize. Please email brooketoberfest@gmail.com to let us know you are coming and paying at the door. No one will be refused at the door. Come one, come all, we are gonna have a ball. 4 hour open bar, hors d’Oeuvers, dinner, great bands, and a great time. Where else can you get a night out, have dinner and a few drinks and give to a great cause for $100 bucks? All proceeds will go the the Brooke Healey Foundation and will help fight this devastating disease. Discounted rooms are available for those interested. See the previous posts for more details.

Thanks,

Steve

IT’S BEEN A WHILE.

Written Octobber 7, 2013 8:35 am
It’s certainly been a tough adjustment, but we all seem to be getting by day by day. Not a day goes by when you don’t stop and think about Brooke. It seems more like hours and minutes. Bryn is growing up fast and taking on more and more of Brooke’s characteristics, personality, and manorisms. That is both nice and painfull at the same time.

Stef’s pregnancy is going well. The baby is due in March. I think we find out the sex at the next doctors appointment.

We are just 19 days away from BROOKTOBERFEST. We have sold about 1/2 of the 200 offered tickets so far. If you are planning on going, please reserve your tickets soon, so we can give an accurate head count to the hotel. The hotel is also offering rooms at $99 for anyone interested.

Steve

Brooke’s video.

Written September 14, 2013 12:25 pm
Here is a link to BROOKE’S VIDEO for those who could not attend the event at Summit Hotel or if anyone wanted to view again.

Brooke Elizabeth Healey of New Providence, NJ passed away at Morristown Medical Center on Monday, September 9, 2013 at age of 5.

The funeral will be held on Friday, Sept. 13th, at 10 AM at Our Lady of Peace Church, 111 South St., New Providence, NJ. Close friends and immediate family only will then proceed to a private entombment service. Following the church service relatives and friends are invited to attend the memorial gathering and celebration of Brooke’s life to be held at the Grand Summit Hotel, 570 Springfield Ave., Summit, NJ, from 12-4 PM. Funeral services are under the direction of Paul Ippolito Berkeley Memorial, 646 Springfield Avenue, Berkeley Heights, New Jersey. For directions or to send condolences please visit HYPERLINK “http://www.ippolitofuneralhomes.com” www.ippolitofuneralhomes.com.

Brooke was born in Morristown, NJ and resided in New Providence, NJ. She was student at the Sundance School in North Plainfield and New Providence Presbyterian Pre-school.

Brooke’s radiant smile left a lasting impression on all that knew her. She was a gentle, caring young heart who, in just the few weeks prior to her own diagnosis, decided to donate 12 inches of her own hair to the Locks of Love program in honor of her aunt that had cancer. Brooke’s favorite moments were spent with her best friend, and brother, Ashton, and younger sister Bryn. She was a quite the little chef and chose and prepared her meals very carefully. She also enjoyed many crafts as well as playing with make up, princess dresses and doing her nails.

Brooke is survived by her loving and devoted parents, Steve and Stefani (Elefante) Healey of New Providence. She is the loving sister of Ashton, Bryn, and the late John August, Martina Rose, and Reece Carmela Healey. Cherished granddaughter of Al and Betty Ann (nee Curcio) Elefante of New Providence, and Stephanie Colangelo (nee DeMarco) of Florham Park and great-granddaughter of Rose Curcio of New Providence. Beloved niece of Robert Healey, Jr. of Florham Park, Michele and Joseph Stivalo of New Providence, and Joseph and Caryn Elefante of Florham Park and loving cousin of Rose Stivalo and Cate Elefante.

In lieu of flowers please make donations in her memory to the Brooke Healey Foundation, PO Box 451, New Providence, NJ 07974.

Brooke’s services.

Written September 10, 2013 10:05 am
I will do a more formal post with addresses and links later. Everything will be on Friday.

10:00 Short church service at OLP Church in New Providence

Family and close friends will head to the Mausoleum at St. Teresa’s in Summit.

In Lieu of a wake, Stefani and I will receive all guests at the Summit Hotel 12:00-4:00
We welcome all who followBrooke’s website.

Steve

Brooke just passed at 9:53.

Written September 9, 2013 9:53 am
Stef and I were holding her at her last breath.

Brooke is sedated.

Written September 8, 2013 5:59 pm
Brooke has pretty much been out since 9am. The rattle in her breathing is much less than it was last night but still very much present. They have suctioned her throat twice today. Mostly clear fluids are coming out now. Last night there was a large amount of blood in the suction tube. So I consider that an improvement although we are far from out of the woods here. She still has a fever around 100 and her heart rate is now 160. Her blood culture came back as positive for a virus similar to a cold. This explains the fever and congestion. There is no antiviral medicine so we will have to wait 48-72 hours to see if she can shake the virus on her own. It is a possibility she will never fully recover from the virus.

She is on an IV through her port with a steady flow of pain killers. There is a button we can push 6 times an hour no sooner than every 10 minutes to give her a jolt if she is in pain or agitated called a PCA (patient controlled analgesia). She also wears a oxygen mask while she sleeps. If she is conscious, she pulls it off. Her oxygen levels are really low. They should be around 90 and are at 35. Of coarse, this kid can’t catch a break. She now has an irritation that is bleeding on her right groin area. The pull ups she wears were rubbing so bad it has created a raw skin area. She is in a chair right now and I don’t want to bother while she is resting. We have cream on it and a bandage to create a buffer between the pull up and her skin. Once she is up, I think we are going to take the pull up off and just lay her on the bed with a protective blanket.

Right now we are trying to figure out the oxygen issue. It is up to 60 after they just suctioned her. Now 70. Hopefully stable now.

I will update later

Steve

Brooke had a brutal night.

Written September 8, 2013 10:37 am
Shortly after posting last night things got ugly. Brooke had a 103 fever that lasted until about 9:00 am. Right now it is at 100. There is always a major concern over fever when you have a port. If the port becomes infected it is possible it would have to be surgically removed. Since there were three failed attempts to access the port on Friday and at least one yesterday it was certainly a concern. Brooke took an antibiotic last night through her port and just took another as well as a whole slew of meds.

The fever was the least concerning. Brooke developed fluid in her lungs and throat. It sounded as if she were submerged in water covering half the opening of her mouth and trying to breathe. We had her suctioned several times (maybe a dozen) only to have the fluid immediately return. Her heart rate was at 210 and oxygen levels low. The worst part is that she was sedated but conscious. Completely aware of how difficult it was to breathe. Bothered by the fever and uncomfortable from the fever. If I had to picture what she was feeling, I would guess it would be as if you were drowning and pulled up for air to just save your life only to be pushed back under water for 12 hours straight. Clearly no one got much sleep.

Luckily she has settled down a little. She is sleeping right now. She still is breathing with that rattle, but not nearly as intense as it was all night long. Her respiratory rate is around 30, which is acceptable, but her breathing is still labored.

The doctor in charge of the palliative care is certain that the excess fluids are the main cause of all her problems. Our hospice nurse, Linda, is here now and is saying she has been saying this for weeks. If you go back to some of my posts, I have been saying this for months. Her size and bloating are creating all of these issues. Linda thinks it finally caught up all at once. MSKCC was reluctant to start the lasix (diuretic), but has come on board since seeing it had a benefit. It was pretty much automatic to go on once we got here and we have increased the dose four fold.

Here is the plan. The fluids are leaving the vessels and spreading everywhere. She will take a protein called albumin. This will pull all the fluid back into her vessels and then she will be given the diuretic to drain (pee out) the fluid in the vessels. They can only give the albumin once every 8 hours. The first dose helped. Lets hope it continues.

WTF! This poor kid.

Steve

Brooke is having a rough time.
Written September 7, 2013 8:47 pm
The consensus is that the source of Brooke’s pain is from the way she sits. She sits and sleeps upright for over a month now. The pressure from sitting in the same position for so long, coupled with the increase in her size combine to make it very stressful on her back and hips. She must continue to sleep that way because of her respiratory issues. If she were to lay flat she does not get enough oxygen and has a mucus build up. We have an oxygen tank at home but the childs’ size cannula keeps falling out of her nose because her face is so bloated. The adult size fits in her nose but is too wide to fit into each nostril. I did cut an adult one and McGyvered it back together but every time she pulled at it or took it on and off it came apart. We have a mask here but she tore it off earlier in the day. I am hoping that is because she wanted to work on her sticker book and it was obstructing her vision. If we can get her to sleep I may try it again. The other option is cut the end of the hose off and hold it under her face so the oxygen directly blows at her nose and mouth. This technique is called a “blow by” and has actually been outlawed. I guess you can’t have oxygen free flowing in the room, but no one smokes in hospitals anymore. The nurse did say they still use it in rare circumstances. If she is sleeping I can rig up something to hold it in place. We also have a fan blowing on her just so she has continued air flow. That too should help her breath easier.

The lack of ability to access the port was really weighing on me. Two nurses were here and tried. Both felt as though it was in the receptor but it would not flush. This was the same feeling of the experienced nurse who tried at our house yesterday. Just when they were about to give up I remembered one time at MSKCC the same thing happened and they put in some fluid that eventually cleared up the clot. I told the nurse that and she said that she could try to leave the heparin in the tube under a little pressure for a half hour or so and see if it does the trick. I told her I didn’t think it was heparin that we used last time but she was pretty confident that was the only option. About 40-50 minutes later she came back and tried to flush it again. Nothing. Just as she was going to withdraw the needle, I questioned her again and said I really don’t think we used heparin last time. What else could you use to clear up a clot? Her and the other nurse started talking and mentioned cathflow or attaplase but were not really sure if they would work. After much conversation, we left the needle in and the nurse went to talk to the doctor about what would be the effects if they injected the tube with attaplase and the needle was not really in the port. She also called the manufacturer just to make sure. Both said it would cause some irritation and maybe some pain but would not do any damage. I know I am painting this nurse in somewhat of a bad light but she is actually excellent otherwise. Anyway about 45 minutes later she came back and we had blood flow! What a relief. The port is accessed and functional. I don’t know why this isn’t commonly known by nurses who access ports regularly. Maybe most people use their ports more often and they are not prone to clot as much. Who knows, I am just thrilled we figured it out.

We have increased the diuretic to about 4 times the amount she was taking. She still has swelling in her hands and legs. The fentanyl patch has also been increased, but has fallen off a few times. The nurse thought she was sweating it off but when we checked, she was not sweating. So now the theory is that because she is retaining so much fluid the moisture under her skin is repelling the patch even though he skin is dry.

She was pretty irritable and whined for about 2-3 hours this afternoon. She was fighting so hard to not fall asleep she was making herself so cranky and overtired. Once she fell asleep (for about 45 minutes) she woke up and is doing a little better. Stef was able to rest during that time as well. Every bit helps. We now have her fentanyl patch secured to her back with 5 cover bandages. I hope it works but it is going to suck taking it off. This is consistent with the theory that she is not getting the full effects of all the pain meds she takes because the fluid blocks or absorbs more than she gets.

Brooke told Stef she wants to stay here two more nights. She is doing everything she does at home but in much less of a duration. Most of the time she has been sitting and moaning, but she also sits in her chair and does stickers or colors. She watches TV. She talks (although extremely difficult to understand) about what she wants to eat. Maybe she thinks it is a nice change of atmosphere. Whatever it is I’ll take it. The last time we were here admitted in the hospital she screamed “I want to go home!” for days.

Let’s hope tonight is a better night and we are on track to figure out what will make her comfortable. The staff does not think that it is unusual to have so many uncertainties on day one. The doctor said he expected Brooke to be responding the way she is right now and is confident the next day or two will provide the answers we need. He said we could possibly head home Monday night or tuesday.

I will probably post something tomorrow. Hopefully better news.

Steve

Brooke was admitted to Morristown Memorial last night.
Written September 7, 2013 10:16 am
The medical team felt that Brooke was having so much pain because her meds were not getting into her system properly because of all her fluid build up. The plan was to get her set up to take her meds through her port at home rather than orally or the transdermal fentanyl patch. When the nurse arrived to access the port, she was unable to. This had become an issue the past 2-3 times we had it accessed at MSKCC. Each time we went to a longer needle and had more trouble setting it in the receptor. The receptor does move a little bit under the skin and because of her significant weight gain the receptor is much deeper than it used to be. It didn’t seem to be too big of an issue since she was only having it accessed once a month for pentamidine. Pentamidine is an antibiotic that helps offset the continued use of the steroid. Now it is an issue, because we were going to use the port daily and can’t. Apparently the nurse, Carol, who tried at the house is one of the best and working 39 years. After we admitted Brooke at least three people at Morristown said if Carol couldn’t do it, that is not a good sign.

Once all this occurred at home, the medical team discussed bringing Brooke in as an inpatient to get a better grasp on exactly what would make her comfortable and pain free so we could go back home. Of course Brian Donnelly had come to this conclusion about a day and a half before any of the doctors or nurses. He continues to be an advocate for Brooke and shares his experiences of what they had to do with Juliana when she was fighting her DIPG.

Stef and I had three choices. Go to overlook, go to Morristown, or go to MSKCC. Morristown and Overlook have a special room called Liam’s room for families with children battling life threatening conditions. The rooms are bigger and can accommodate larger amounts of family members visiting and staying over if necessary. Plus each are local hospitals. We were not 100% comfortable with one of the palliative care doctors at MSKCC and found that they were on call the next few days. Our pediatrician, Dr. Kemeny, and hospice day nurse, Linda, know the staff and were both very comfortable working with the doctors at Morristown and Overlook. So we decided that we were going to stay local. Stef and I were trying to get in to Liam’s room but both facilities were occupied at the time. We figured we could get in sometime today, but got a call last night they moved some people around and got us in. Both Dr. Kemeny and Linda did some leg work to get this done. Stef and I spent about 25 minutes at Leenie and Dave’s wedding before leaving to go to Morristown. The very limited time we were there, you could see it was great event and going to be lots of fun. We were glad we see them, even if it was for a short time. Congrats guys!

When we got home Sam and Courtney had all our bags packed and ready to go. Like I said in an earlier post, there are not to many people we would trust at home with Brooke without one of us there. Many of the nurses that visit the house comment on how great of a job Sam does for us and how natural she is at getting things we need done before we ask.

So here we are at Morristown. We are in a room next door to the room Brooke stayed in when first diagnosed. It is large and very accessible. As of now, we have just increased the doses of her meds and discussed some options. One of which is to try and access the port again. Brooke is urinating very frequently because of the increase dose of lasix (diuretic). She still is in pain and discomfort each time we bring her in the bathroom so it was a long night. We are expected to be here at least 3 days.

I will keep you posted.

Steve

Brooke still battling with dosing.
Written September 1, 2013 3:11 pm
Brooke had her princess birthday party yesterday. She had a rough morning and Stef wasn’t sure if she could make it to Robert’s house in the afternoon. We pushed the issue and she seemed to enjoy her day. Brooke spent most of the time at the table sampling all the different types of appetizers, snacks, food, and treats. All the other kids went swimming and were running around. When it was time to sing to Brooke, all the girls had dresses and tiaras on. Ashton had a cape and a king’s crown. All the kids had fun.

We have now upped her fentanyl patch three times. She went from 12.5 mcg/hr to 25 mcg/hr, and is now going on a 37.5 mcg/hr. She still needed the oxycodone at each dose increaseand the patch alone has not been enough. Hopefully the 37.5 mcg/hr does the trick, but I doubt it will. While she is still on the 25 mcg/hr, we need to give her more oxycodone than the equivalent of of the increase to 37.5 mcg/hr. Stef and I really just want her to be pain free. The doctors are concerned over her becoming too sedated on these high fentanyl patch doses, but she really doesn’t get sedated. Even if she were, it might be a fair trade off to get some pain relief.

Nights are becoming quite a task. Brooke is waking up at least once an hour and staying up for 30 minutes to a couple of hours. Brooke will not let me lay with her or even hold her hand. She screams for Stef and demands that Stef stay with her. Stef and I are both up most of the night, her more than me because once we get Brooke settled again Stef is the one that has to be by her side until she gets back to sleep. Not great for the pregnancy.

Usually Brooke is up for the day around 7-7:30. Most of the time I will take her down to the kitchen in her wheel chair where she likes to color and draw. Stef tries to get another hour or two of sleep, but that rarely works with Ashton and Bryn running around yelling and playing. For the first time ever, we all laid in our Bed until 10:00. That helped a little because we were able to get some rest even though the cartoons were on, Brooke had to get up to go to the bathroom a few times, and Ashton and Bryn fight over whose blanket each are laying on.

55 days until BROOKETOBERFEST.
Yes, we have another fund raiser. Donny had an overwhelming response to bands wanting to do something for Brooke and we had to create another opportunity. I know there have been literally dozens of fund raisers and we really appreciate everyone’s generosity and time they have committed. We are in the process of starting our own 501c3. This is not to say that Heartworks hasn’t been outstanding for us, but with all of the different efforts we need to branch off. We are extremely thankful for everything Heartworks has done and continues to do. Anyway, it looks like we will have 3 major fund raisers each year. Possibly a golf outing, the Biker rally, and maybe this Brooktoberfest event. (We also kicked around Brookstock and Brookiepalooza as possible names.)

Please make an effort to support this event. It is probably the last of the year. I will attach the flyer for ordering tickets in the next couple of days. I am having trouble downloading it right now. You can contact Donny at the email in the poster below for ordering information in the meantime.

Thanks again!

Steve

Summer coming to a close.
Written August 25, 2013 1:11 pm
Brooke will turn 5 on September 3rd. Ironically I will be returning to work on the same day. The Madison BOE reneged on their promise of supplying me additional sick days. They gave them to me on my online account and removed them after I ran out of my own sick days. That’s a story for another time. I promised Stef I would keep these posts positive in nature.

Brooke will have her “Princess Birthday Party” at Roberts pool house. Thanks to the Reiling family and Lisa Goldenberg of Creative Kids in Garwood for supplying the the dresses, wands and other princess paraphernalia.

I had hoped that we could send Brooke to kindergarden. I thought that the worse case scenario would be that we could only send her for an hour or two. I don’t think she will want to go anymore not to mention Stef can’t get her in and out of the car on her own. She and her cousin Rose would have been in the same class. It is becoming more difficult for her to hold herself up after I take her off the toilet or commode. Her legs buckle and give out almost everytime. It is a challenge to go through the bathroom ritual every hour or so, but as long as she continues to want to do it that way, that is how she is gonna go. Sam Davis is going to try and take over for me when I am not around.

I don’t know what this kid has to go through or whose sin she is paying the price for, but its heart wrenching to see her in such pain all the time. We started her on a fentanyl patch to help control her pain. The hope was to have her take less and possibly no more oxycodone. We also hoped that there would be no lag in between doses. The patch would give a continuous dose so she wouldn’t come on and off the pain meds. While on the patch, she continued to need the same 3 ml every 3 hours she has been on before applying the patch. We actually started going every 2-2 1/2 hours. Brooke is now applying two patches in the hopes to get an adequate dose. It is mildly better.

Catherine Heldt-Ebel and Spotlight Dance Academy are holding a fundraiser for Brooke today. I know they are selling T-shirts and have a silent auction. It is at Brook arts Center in Bound Brook at 3:30.

Stef has never had an easy pregnancy. She has always felt sick through the 1st trimester (thats how she knew she was pregnant). She also cramps up pretty bad in the 3rd trimester and has delivered early each time. Hopefully, with the 2nd trimester right around the corner, she will get some relief soon. She has had a migraine headache since Wednesday of last week. It seems as if it is starting to ease up today. She has not been able to rest at all. Brooke will not let her outside of 3 feet from her view. Brooke cries and screams “Momma” repeatedly if Stef isn’t sitting next to her. Stef has it pretty rough right now.

Steve

Sad news and some Catching Up!
Written August 20, 2013 12:30 am
Juliana Donnelly passed this afternoon. Brooke was diagnosed on Monday January 14th and Juliana’s father, Brian and I have on the phone everyday since. I work with Brian’s sister, Patrice, and when she heard of Brooke’s diagnosis, she put me in touch with Brian. Can you believe she knew two kids inflicted with DIPG? Her niece and a co-workes child. Anyway, Brian and I became fast friends. Soon Stef and Dorris (Juliana’s mother) were texting and sharing the journey. I learned a lot from Brian and couldn’t keep up in the early days. He was unfortunately a fountain of knowledge and one of my primary resources. It wasn’t long before we bounced research and trials off each other for hours on end. Every time one of us found something new and promising in nature, we immediately called the other. Between Robert (Stef’s uncle), Brian, and myself, we knew of everything out there and many things that were not. It was Brian who decided to get a biopsy when most everyone else disagreed. He also turned me on to Brooke and Juliana’s surgeon, Dr, Souweidane. My heart goes out to the entire Donnelly family. We are all deeply saddened that such a beautiful girl couldn’t keep up the fight any longer. May she rest in peace!

It’s been a couple of weeks since I posted. Usually it has been a case of no news is good news, but that has not been the case. I posted Brooke was stable the day of the Vigil, and she was but had another UTI. I was supposed to get a call that day about the prescription and never did. I was all set to go to battle for the prescription 1st thing in the morning, but when we returned home, there was a message it was ready to be picked up at Walgreens. Luckily they are open until 10:00 so ran out and got it. The medication worked and in a few days Brooke was no longer uncomfortable or screaming when she went to the bathroom.

I was feeling pretty good. We had the diuretic under control. Her swelling was down. We were weening the steroid. Her breathing was under control. She was no longer in pain every time she went to the bathroom. She was tolerating the Iscador with no side effects. Everything seemed to be coming together. A couple of days later, Brooke had intense pain every time we moved her. She has been asking to go to the bathroom at least once an hour. Now every time I picked her up she would scream in pain. We couldn’t figure out what it could be. I thought maybe a hernia or some kind of pull or tear in her abdomen, but we couldn’t figure it out. We recently got a prescription for oxycodone. If she had pain, this was supposed to better than the morphine we were using to help control her respiratory rate. We started to use the oxycodone 1-2 times a day. It seemed to be every other day which was working out great because she can’t take a narcotic along with the Iscador because it will counter act the effects of the Iscador. Since she takes the Iscador three times a week, we could keep her on schedule. That did not last long. On the 14th I had to text our doctor friend in Long Island and inform her we were putting the Iscador on hold because we now needed to maintain steady doses of the oxycodone. We started giving her a dose every 6 hours and had to bump it up to every 4 hours. Today her day nurse inquired about a patch to keep a continual dose flowing. Mary called me tonight to check in and confirm she wrote the order for the patch. I think we get the patches on Wednesday. I am hoping we may not need them.

The oxycode has helped and we seemed to be managing once again. Until yesterday of course. Stef called me and said Brooke was choking and couldn’t swallow. She even choked on her meds and had trouble keeping them down. Swallowing issues are symptoms of DIPG progression. Every visit to MSKCC since January we were asked “How is the swallowing?”, and each time we answered “Fine.”

Although she did have some more complications swallowing today, it was much better than her episode Sunday. Brooke also is having more difficulty speaking. It is getting tougher and tougher to understand her. She gets incredibly frustrated when we can’t guess what she is saying. The pain seems to be manageable once again, but she is constantly on oxycodone.

Both the day nurse and MAry recommend we increase the steroid dose back to where it was previously. She is currently taking 1mg in the morning and 1 mg in the evening. This is one of the lowest doses she has been on since January. I could see the the end of the steroid in sight and was excited that maybe I could start controlling her weight a little. We are going back to 1 1/2 mg in the morning and 1mg at night. It is not a major increase and Mary thought that maybe it could help the swallowing and speech. She also said if it does we still maybe able to start the ween again in a week or two. I don’t know if I am hearing what I want to hear or these are real possibilities. Don’t get me wrong I am still convinced she is gonna kick this thing. I don’t know why I believe it so much, I just have a feeling. I told Mary my goal is that she be the 1st biopsied DIPG survivor. None of the survivors I have contacted had a biopsy done.

I will try to post more often. I don’t know why but I can’t seem to motivate myself to do so. Once I am sitting and writing it just flows, but I am having a tough time getting started.

Steve

CANDLELIGHT VIGIL AND OH WHAT A SURPRISE!
Written August 5, 2013 10:11 am
Brooke is still stable. She put some of the mass back in her belly but the fluid has not returned to her hands and feet like it was. We will continue to experiment with the diuretic and hopefully control her dietary intake better now that we have weened the steroid yet again. One of our non traditional remedies has a natural anti inflammatory characteristic that I hope will allow us to finally get off the steroid once and for all.

When we visited MSKCC last week they did give us the prescription for the diuretic after seeing the success we had with it. I think it was clear to them (surprisingly so) that she was in fact stable and doing fairly well and we needed to control the pain and inflammation.

She has been taking the steroid since January 14th and now has more than doubled her initial weight. She started at 28 pounds and is now 63 pounds. The excess weight is keeping her from doing a lot of things. I believe walking is one of them. She can no longer stand without her legs giving out . The only time we were having her stand was in front of the toilet after she goes so we can wipe her and pull up her pull up. This makes taking her to the bathroom quite a task now. Since exercise is pretty much out of the question I hope diet can help.

Tonight at Our Lady of Peace in New Providence located at 99 South street, there is a Candlelight Vigil. I hope most of you can make it. BROOKE IS GOING! (Please don’t overwhelm her with well wishes. I think it would be best to give her her space.) It is promptly at 8pm-9pm at the soccer field next to the tennis court. You are asked to bring your own candle or flashlight. If you are unable to attend please place a candle in your window or doorstep. I think it would be neat if we could fill the field.

Oh by the way, Stef is pregnant. We figured we didn’t have enough challenges in our life right now so we needed to add another. No, seriously we were quite surprised and overwhelmed at first, but now are getting more and more excited each and every day. The kids are really excited.

A comment from Stef:
Last night, while I was trying to comfort Brooke, I was telling her about “Ted”, her teddy bear. I had gotten it before she was born. It had come with a purchase at Bath and Body Works actually, and I had kept it and she liked it, so she ended sleeping with it every night. So, I was telling her, and she said, “You can have it back now.” I said, “NO! I don’t want it back. I want you to sleep with Ted.” She answered, “I want you to have it because your tummy doesn’t feel well, because of the baby in it.”
So, two things, Brooke is the sweetest thing ever. And yes, I’m pregnant. We are very very excited and a bit overwhelmed. It is has added a whole new layer to our journey and we are happy to share this journey with all of you.

Hope to see you all tonight!

Steve

A lot of time has passed and a lot of updates.
Written July 31, 2013 2:12 pm
Sorry for the lack of updates lately. I have meant to sit down and post quite a few times and just couldn’t get motivated. There is a whole bunch of stuff to update so it wasn’t from lack of material.

So going back three weeks, Brooke was having a real tough time. As Stef posted, she was so swollen and uncomfortable. Her skin was stretched so tight I thought it might tear. She would scream in pain and there was no position we could put her in that would calm her down. Picking her up was getting to be a huge task and Stef could no longer do it. Brooke would scream in pain every time we picked her up. During this time, Brooke had a yeast infection, urinary track infection, and a hemorrhoid. She would do her best to not go to the bathroom because of how uncomfortable and painful it was, so she would hold it in and create more pain and discomfort for her self. Once she went there was temporary relief, but she still would scream when we picked her up to move her out of the bathroom or off the commode. I really thought this was the end. MSKCC wanted us to pump her full of morphine and make her as comfortable as possible as we rode out the remaining days.

Luckily, our day nurse had a better idea. She wanted to have Brooke take a diuretic. She was surprised MSKCC had not prescribed one for her prior. The diarrhetic would help the body release all the extra fluid her body was retaining. Again, MSKCC said they didn’t feel the need as it would only be a temporary solution and they have never proceeded that way. It was not part of their protocol.

We couldn’t stand to see her in such pain and constant discomfort, we gave her the diuretic. It took a couple of days to kick in, but seemed to work like magic. Her hand looked like a baseball with 5 stubby fingers poking out. It shrunk to 1/2 the size in 2-3 days and now is almost normal. Her legs, although still pretty big, are not nearly as inflamed and you can pinch skin with your fingers if you wanted. Her belly, also still quite large, shows some elasticity and is softer to the touch.

We ended up giving her the diuretic 4-5 times over the first week or week and a half. At this time, MSKCC refused to prescribe it. The day nurse got us the first dose and could not get anymore without a doctors prescription. We were ready to completely pull out of MSKCC and go under the care of another doctor. The only thing holding us back was Mary, Brooke’s nurse practitioner. Brooke, Stef, and I really love her. She is great. We decided that we needed to part ways and get someone to prescribe this diuretic. We first reached out to our pediatrician, Dr. Kemeny. Although Dr. Kemeny will do anything for us, she didn’t feel comfortable taking the lead on a brain tumor case without having the necessary experience to recognize signs and symptoms as they were to arise. Stef and I completely understood and respect her position. Dr. Kemeny, did however offer to take the lead if the doctors at Morristown would collaborate with her along the way. She reached out to the same doctors that were treating Brooke before we moved to MSKCC. She works with this team often and is comfortable with them. They refused to take Brooke on as a patient because they have not seen her in so long and felt “out of the loop” with what has been going on with Brooke in the last 7 months. You probably think I was about to blow a gasket, but actually (after being a little pissed off) I didn’t give a shit. We would stay at MSKCC and give her the diuretic on our own without a doctors consent. It worked beautifully. We made sure not give her too much and kept her potassium levels ok with banana smoothies and orange juice. We actually have the best of both worlds. We keep in contact with Mary, and see Dr. Kemeny as needed. We are going to MSKCC tomorrow for a visit/check up. Brooke needs to take an IV because her port has not been accessed in quite some time.

After Brooke seemed to be benefitting from the diuretic (about 3 days in), she got a virus that Ashton had a week prior. She had diarrhea for about 4 days. She again had discomfort while going to the bathroom and started holding it in again. What does this kid have to go through? It is pure torture!

I would now characterize Brooke’s health as stable. She has not walked in about 6 weeks. She still eats on her own. She may even be talking a bit more than in the past. I think with the bloating and swelling under control, she is more comfortable and is trying to do more. We also have weened her down on the steroid a bit and her appetite is not quite as aggressive as it had been. If we can work on her food intake and have her drop a few pounds, I think it will help to make even more of a difference. She has asked us if she can start practicing walking again. When I have tried she is reluctant and refuses. I think she may be coming around and we can start soon.

I know everything sounds rosy, but it is still quite an undertaking every day and night. From where we were, it is a huge improvement.

Brooke has started both of her non traditional treatments. She has been taking the Iscador (German mistletoe extract) topically at the advice of a doctor and pharmacist we found in Long Island. I don’t want to name them as Iscador is not FDA approved. Fred Evanko, whose daughter Grace was a victim of DIPG, gave us our first dose from a batch he had that he was going to give his daughter. Unfortunately, Fred was never able to start Grace on the Iscador because she developed complications. For some reason he never discarded the Iscador and told me that maybe the reason was he was supposed to be keeping it was for Brooke. He also turned us on to the Dr. in Long Island. Fred reached out to me after I posted a few weeks back that I wanted Brooke to start the Iscador. Stef and I met him in Connecticut while we were attending the services of another little girl, Fiona, who we met at MSKCC. Fiona also had a brainstem tumor, although it was not a DIPG, it was equally as devastating. So far, Brooke has tolerated the Iscador well. Next week we will start the injections assuming she continues to tolerate it as well as she does. I have been taking the same dose as Brooke so far and have not felt any side effects. I am 4x her size so I don’t know if she is, but I don’t think so.

Stef and I believe the second of our two non traditional treatments is helping. How much, we don’t know. I am in contact with a friend of a friend who is helping to get me a different (larger) dose in the near future. I am still not ready to fully disclose what I am talking about or where I have these contacts, but I really do believe that this could make a big difference. I have been working on obtaining the product since May and it is not an easy path. Our research extends as far back as January. If anyone who reads these blogs has friends or family they share my information with, I will gladly discuss with you in person exactly what I am talking about. I don’t want to put anything in writing just yet.

Medically that is about it. There is so much more as you may have seen on facebook. We went to the Freedom tower and signed the wall. Stef and I went to the Bon Jovi concert and got a backstage tour. Stef held his guitar and microphone. This was special to her. Thanks to Donny and Mike Rew for getting this done. There was also the Beacon Hill Tavern “Dine for Brooke night. That was also a fun time. Dinners at Sean and Sandy’s, swimming at Uncle Robert’s pool, Liz Bungo and her dog Sandy came over for pet therapy and much more.

I am sure there is a bunch I am forgetting, but that’s all for now.

Steve

SIMPLY AWESOME FRIENDS!
Written July 13, 2013 11:13 pm
The two pics below are of Sam Davis’s foot and Michelle Davis’s foot. Sam has always called Brooke “DOODLEBUG” for as long as I can remember. Sam is helping us out with Brooke 2-3 times a week and we are comfortable leaving the house with her caring for Brooke. This is no easy task, but it gives Stef and I a little break (much needed) every once in a while. Usually one of us is home while Sam is here, but it is a relief to know we can leave Brooke with Sam if need be. Sam tattooed “Doodlebug” on her foot. Words can not explain what an amazing gesture this is. It’s not like Sam has a bunch of tattoos, this was her 1st ever.

Michelle took Sam to get her tattoo. While she was there she wanted to get something with her kids names but wasn’t really sure how to do it. After talking with the tattoo artist they came up with the Rosary idea. Michelle has 4 wonderful kids Frankie, Courtney, Sam, and Patsy that have helped Stef and I time and time again. Frank Sr. and Michelle have always been there for us as well. I call them friends, but they really are an extension of our family. Recently with the mess of my mothers move to NJ, Frank and Michelle offered for my mother and brother to stay at their house in the apartment above the garage rather than the hotel they were at. The Davis family lost their home to a fire almost a year ago and are renting a place a mile or so from my mothers new house while their house is being rebuilt. This entire family just gives and gives, and then gives a little more. Here they are displaced from their home and offer a place for my mother and brother so they can be more comfortable. Unreal! This worked out so well for us, I can’t begin to tell you what an ass ache this saved me. Anyway, back to Michelle’s tattoo. If you look, there are 4 stones on the outside edges of the cross. Each is the color of her kids birth stone. THE BLUE ONE OUSIDE THE CROSS IS BROOKE’S BIRTHSTONE!

Stef and I are so touched at these gestures. Lis, Kaity, Sam, Michelle, and obviously me all have tattoos inspired by Brooke. Not to mention all the other gestures and things everyone does for our family day in and day out. I guess that someone marking their body for life to honor my daughter just put me over the edge.

Looks like Stef is in line to get the next tattoo. This is getting contageous.

Steve

Post from Stef, Band for Brooke fund raiser, and Dine for Brooke Fund Raiser.
Written July 12, 2013 4:18 pm
Brooke is not doing great. She is so swollen and very uncomfortable. She has trouble swallowing sometimes and has to sit and sleep upright. It is too painful to lay flat. Writing this down, I feel like I am writing about another little girl. Often times it is difficult for her to speak and almost always difficult to understand her. I could make this sound better then it is, or worse then it is. One day I might just tell you how hard it is and BEG that children’s brain cancer awareness need to be spread and a CURE HAS TO BE FOUND. But I’m not there.

Right now I am an advocate for just my girl. (And three other little girls, and one little boy we have met along the way.)
It’s not easy for me to write this, because somewhere in the back of my mind, I hear someone saying something like, “Oh, poor woman, will believe anything.” I do not think that way though, but I just have to get past that 1% of me that cares if someone pities me.

So below is the what happened yesterday, including the events leading up to then.

The day we went to the Yankee game we were also invited to a healing mass for children at Little Flower in Berkeley Heights. I had told them that we would be interested, but Brooke is in no shape to sit through a mass. They kindly said, bring her in early and Brother Paul will bless her and she can leave. I thought we would give it a try, but if we were running late, or changed our minds, I was fine with skipping it. Something made us go there that day. Brooke was so uncomfortable. You could see the other parents smile at her but with tears in their eyes.
A man named Brother Paul came up to us and blessed Brooke, and then each of us. We promptly left.
When I got home, I thought to myself, let me check out Brother Paul. He had given me such a sense of peace. I read his story on line. I encourage you to as well.
http://m.healingministryofdivinemercy.com/My-Story—Maria-Esperanza.html

After we left, probably the same night, or maybe the next day, I was contacted by Br Paul’s assistant Ana. She said that Br Paul would like to come meet us again in private and do a more comfortable blessing for Brooke. I agreed. They came twice to the house, both times we had a fine time. Br Paul had mentioned he knew why he was there, but didn’t think I was ready to hear it.
I won’t get into too many details right now, but there are about three significant things that happened that came together and today was the culmination of that. I am not quite ready to put myself totally out there yet…although most of you know more about our lives then I would have EVER imagined….Br Paul arrived today with a relic of Maria Esperanza. He said that Maria Esperanza needed two miracles to happen on her behalf after her death to become a saint. The ones that happened while she was alive didn’t count. (Forgive me if I am not telling you exactly how he told me and what technically needs to happen, but that is basically what he said.) He said that he thought Brooke could be one of those miracles. He had Brooke hold the relic of Maria Esperanza’s blood and prayed.
I have been trying to accept God’s will and will continue to do so. But I’m not going to pretend that I don’t hope that His will is that Brooke will be a miracle in this way.
I told Br Paul that there were so many people, good people, that follow our story and care for Brooke. I told him that if they witnessed this miracle, it would be life changing for so many. He said he knew that, and that is what we should pray for.
I asked Br Paul a few questions that I thought of and he answered them .We all had tears in our eyes. It was very moving. No matter what happens, this was very special for me.

Stef

Not to take away from Stef’s post, but we do have some fund raiser updates.

Dine for Brooke at the Beacon:
Beacon.pdf
1.4 MB

Bands together for Brooke:
BANDS TOGETHER FOR BROOKE!!
August 10th, 6PM-11PM
CROSS ROADS, 78 North Ave, Garwood, NJ 07027
$10.00 cover
All proceeds go directly to The Healey’s
Supporting Brooke Healey and Promoting Pediatric Brain Tumor Awareness

Justin Lerner-acoustic set 6-6:45,
Kosmic Daydream 7-7:45,
Eric Harrison’s Crash Chorus 8-9,
The Rental 9-10:30,
Woods of Ardon 10:30-12:00

It’s going to be a great show!! look forward to seeing everyone!!
Brooke Healey Day video.
Written July 9, 2013 12:18 pm
Is a long video, but it really encompasses the whole day. Shows a little bit of everything. Stef and my speeches are at the 19:45 mark or so. BROOKE HEALEY VIDEO

Steve

Brooke battling like a champ.
Written July 7, 2013 9:38 pm
Yesterday at lunch Brooke had an episode for about an hour. I wrote about that this morning. Last night was a challenge to say the least. Stef finally got to bed around 4am and I have been up since about 4am. Today was pretty smooth. Brooke and I spent the morning together coloring and talking at the kitchen table. Brooke did fall asleep at the table for about an hour and that is when I wrote this morning’s journal. She said she wanted eggs and I told her I could try but mommy probably makes them better. She said she wanted to wait. THIS WAS A FIRST! She really didn’t eat much until Stef got up around 9:30 and made breakfast. All three kids had a bath and Brooke fell asleep in my arms wrapped in her towel for about an hour. It was great to see her relaxed after last night. I made her lunch at 3:00, again odd she held out this long. Michele and Joe took Bryn for the day. Sandy came over at about 1pm for a “girls day”. She brought about 10 dresses for Brooke and a selection of nail polish. Brooke made Sandy wait until she was done drawing her picture before Sandy could do her nails. I left Brooke, Sandy, and my mother in the kitchen while Ashton, Bob and I went out back to watch Ashton ride his quad in the woods behind the house. When we came in, Sandy was under the kitchen table painting brooke’s toenails purple and my mother was doing her fingernails orange.

Shortly after Sandy left, Stef came home from her walk with Michele and we packed up the kids and headed to Joe and Michele’s house for dinner. I headed out out to ride the bike for an hour to blow off some steam and met them back at the Joe and Michele’s. Trying to do the right thing and not have a cocktail or two then ride the bike home, I brought the bike home and jumped on Stef’s 10 speed and cruised down Union Ave toward Joe and Michele’s (maybe a half mile). I turned the corner on Hilary Place and the front tire blew out. The wheel turned, I went over the handlebars and have scrapes on my elbows, knees, hands, tore my pinky nail off and took a chunk of meat out of my big toe. How my shoe came off I have no idea. So here I am, doing the right thing, walking down Crane Circle carrying Stef’s 10 speed with a tire that looks more square than round, dripping blood each step of the way. I walk in the house and obviously everyone thinks I took a spill on the bike (motorcycle not 10 speed). As I tell the story, Stef is laughing almost uncontrollably, Michele is making me a cocktail, and looking for bandages, and the kids want to touch my boo-bo’s. You really can’t make this shit up.

Anyway, other than a short irritability episode, Brooke was a champ. She only had one dose of morphine all day. We came home and she is sound asleep. I really hope we don’t have a repeat of last night. That was brutal.

We are thinking it was the yeast infection that had her a ll messed up. She was holding in her urine and bowl movements because the pain was so bad, she created so much discomfort for herself and brought on different pain in addition to the pain of the infection. Looking back, when I did force her to get on the toilet, she went instantly. She could barely hold it. The discomfort subsided and she was OK for a while. Today she asked to go to the bathroom and seemed to be relatively pain free. I can definitely tell the difference between irritability and pain.

Let’s hope we got this thing under control.

Brooke told Stef, “Today was the best day ever!”

Steve

Some rough times and a new fund raiser.
Written July 7, 2013 8:38 am
Starting around July 2nd, Brooke has been having a real tough time. She started getting real irritable and literally screaming every time she went to the bathroom. She also could not lie down anymore. She had to sit and sleep completely upright. We thought we had the hemorrhoid under control but something was definitely wrong here. After trying to calm her most of the day during the 3rd it became increasingly worse as she started screaming uncontrolably. If I picked her up it was worse. She clearly was in a lot of pain and picking her up intensified it. She did however go to the bathroom each time I brought her but she would stop breathing for a short time while I carried her wincing in pain. It took quite some time for her to regain any composure every time I moved her. I say every time I moved her because Stef can hardly manage to pick her up anymore. So picture carrying a screaming child in a ton of pain to a toilet, waiting about 10 minutes for her to calm down and start breathing properly again, and then moving her back to her wheel chair to start the process over. Now repeat this about every hour or so. Needless to say this is getting tough to deal with. We didn’t know what could be causing this and made several calls to MSKCC. We did have her start using the commode so the trips or movement off the chair would be shorter in distance. Brooke actually asked to wear a pull up in lieu of underpants. This also helped to make less trips or movements.

We finally were able to get some information out of her late at night on the 3rd. She could communicate with a nod of the head. So after asking her a series of questions, we knew she was in pain, but didn’t know the source. We started with, “Do your toes hurt?”, “Do your ankles hurt?”, “… your calves?” on all the way up to her head. We got nods of “NO” all the way on up. We asked again if she was in pain and got a nod of “YES”. After several attempts Stef put her hand on Brooke’s back to sit her up and Brooke let out a whale like no other. “Does your back hurt? We finally got a “YES”, but had no idea of the cause. We speculated that the tumor has spread to the spinal column (as many DIPG’s do) and was creating neuropathy down her spine. MSKCC offered that the tumor could also be pressing on some nerve endings traveling to the spine creating the same effect. How would we know for sure? Well do a scan of coarse. Problem is, no one will sedate her because of her breathing issues. So, no scan.

MSKCC and our home nurse each recommended Hospice be brought in. Of coarse no one works on the 4th of July, so we had to wait until the 5th. In the meantime we were able to alleviate some of the pain with the morphine sulphate we have to help her respiratory rate. We were using it 2-3 times a week prior to this episode and now counting the minutes until the next dose could be administered. We also increases the dosage a tiny bit. Stef and I both agreed there was no way we could see her in this pain.

The last time we were at MSKCC. Mary did examine Brooke and noticed a yeast infection. She had a special paste made to be applied twice daily. We started applying it 4-5 times (if not more) daily. It seemed to help a little. She started talking again, but not very clear and very labored. We were invited to a 4th of July party at the Rust’s house. Brooke overheard the conversation and would not be denied. She was slightly better with the morphine and but paste, but still in no shape to go to a party. She wouldn’t have it any other way and there was no denying her of the party. It was difficult, and Brooke was in pain and discomfort, we we went. This was a very emotionally difficult time for me. I can’t stand to see her in this kind of pain and discomfort.

Oh, I forgot to mention, my mother and brother moved here from Florida at midnight on the 2nd. They were supposed to have a closing on the 3rd, but due to some miscommunication it didn’t happen. The moving truck was to arrive the 5th at 10 am and we had no where to put the items. This is a story in itself. The short version is that I was on the phone the night of the 3rd for about 3 hours with our attorney, Joe Tiboni and the seller (back and forth). And from 9am to about 4:30 on the 4th. We wanted to move the contents in to the new place and the seller was reluctant even after I pulled the brain tumor card and told him what I was dealing with. He eventually agreed and then called the morning of the 4th to recant. As I am calling PODS and moving and storage places on the 4th (clearly with no luck on the holiday) I jump on my bike and head to Florham Park to ask the police if I can park the the POD in the street until the close. I get stuck in a parade and take a detour and happen to drive past the Davis’s house. Frank is outside burning some papers and such so I stop in. I have some time for this parade to clear so I can get to the police station. While I am there I get a hold of someone at PODS and they can’t deliver the next day anyway. While talking with Frank, we realize that we know the sellers attorney. Frank makes some calls and gets me his cell #. I call and plead my case (I know this guy, we have a mutual friend in Dominick Romanelli). If you didn’t know, I eat lunch at Romanellis’ in Madison everyday during the school year. This attorney eats there 1-2 times a week and we sit together at a table where all of Dominick’s friends hang at. I ask him to call his client and get this done. The seller calls me and agrees on one condition. That he have a signed contract in hand before any of this takes place. DONE! I bother Joe Tiboni on his vacation at the Jersey shore for the 20th time. He makes the amendments to the contract and emails it to me. I call the seller who is on vacation at LBI and ask if he has a fax. “NO”. Do you have a phone you can accept email on? “NO” Does anyone at the friends house you are staying at have one? “NO” Can you go to a local store and ask if they will take a fax for you? “NO.” I am about to jump on the bike and drive to LBI to hand this guy the contract and Stef puts out a facebook message asking if anyone is in LBI and can take a fax and maybe deliver it for us. We anticipate the 2 hour drive to take anywhere around 5 hours with the 4th traffic. Sandy Castle (yes that is her real name) suggests I call my cousin RJ in Toms River and see if he has some friends down there. I call RJ, and he says fax it to me I will jump on my bike, weave in and out of traffic and take it myself. The seller calls back and explains he will not be at the house for the rest of the day and doesn’t have the key with him. Anyway, RJ finds this guy on the 12 street pier in LBI, and delivers the contract on his bike. I get a locksmith to let us in, and Frank and Michelle have my mother and brother in there spare apartment above their garage. I guess it wasn’t that short, but I actually left a lot of details out if you can believe it. We are supposed to close on Tuesday.

All of this going on while Brooke is having her worst moments since diagnosis. Well the but paste seems to be working and Brooke is less agitated than previous days. Sandy and Sean come by on the 5th buy us lunch from the Millburn Deli. We go to their house that night and have a lobster dinner. They brought lobsters back from there Maine vacation. The afternoon and night at the Castle’s went fairly smooth. Brooke was much better at night than the afternoon. The afternoon wasn’t that bad, Brooke had a moment of irritability about what she wanted to eat. That was only 30 min to an hour though. Tough at the time, but it passed. We had a hospital bed and oxygen delivered right before we went to the Castle’s and everything seemed to be coming around. Last night was not good. Brooke was agitated and up all night. I think Stef got to bed around 4:00 and I have been up since. Brooke is sleeping at the table as I write this. I am not sure what caused the irritability last night but it was a rough one.

Hopefully today is better!

On another note two former Madison wrestlers contacted me this past week. Gil Thompson manager of the Madison pool wants to do a fund raiser at their annual family day and AJ Rooney, Captain of the US army sent a care package. The package included a flag that has been flying over Camp Nathan Smith in Afghanistan for the last 5 months. There is much symbolism connected to this flag as he explained in a letter. The package also included honorary Silver Spurs. Soldiers are awarded Silver Spurs for completing rigorous tasks pertaining to a Calvary Soldier. Captain AJ Rooney is new to the Calvary and has not received his, but Squadron Logistics Officer, Captain Brian Faloona (Georgia) volunteered his after hearing Brooke’s story. Brooke also received an honorary spur certificate. There are two photos and two challenge coins giving to Brooke on behalf of other soldiers. One of the coins is awarded for extraordinary performance and has a numbering system to mark exclusivity. Brooke will forever be recorded as recipient #313. There is much significance associated with this coin as well. To explain everything, I would have to copy AJ’s entire letter. These gifts for Brooke are much appreciated. They are very inspiring as they were meant to be.

One last item. Donny has started another fund raiser. “BAND TOGETHER FOR BROOKE”
Details:
August 10th, 6:30-11. $10 cover.
3 bands will be featured at the Crossroads. 78 North Ave., Garwood, NJ 07027
The headlining band is The Rental, featuring Ralph Moskal on bass.
Drink specials, good music, good friends, and a good time. All for a great cause!
Steve
New video from Sumayyah.
Written July 1, 2013 1:18 pm
Sumayyah Simone is the photographer Stef and I went to for family pictures with Ashton and Brooke. You can see some of her work in the video as well as hanging all over our house. She does excellent work and made this youtube video of the B4B event.

Thanks Sumayyah!

Sumayyah Simone video
More press from B4B.
Written June 30, 2013 11:40 pm
Alt press Madison 1
Alt press Madison 2
Alt press Madison 3

Donna Mellusi Video
Worst hour of my life since Brooke’s diagnosis.
Written June 30, 2013 11:28 pm
Before I start, here are two more videos of the Bikes. These were taken by my neighbor, Steve who lives across the street. You can see our house and Brooke and co. on the front lawn in the second one. They are off in the distance, but if you pay attention, you can find them.
BIKE RUN PAST BROOKE’S HOUSE 1
BIKE RUN PAST BROOKE’S HOUSE 2

Friday morning I am in the kitchen with Brooke and Ashton and Stef calls me upstairs in a panic. I can’t figure out what the issue could be because Brooke is with me, I go up stairs and Stef is with Bryn with this look of terror on her face. I ask what’s wrong? She replies Bryn can’t walk. My immediate response was that Stef over reacts and is just freaking for no reason. I take Bryn from her arms and put her on the floor and she can barely hold herself up. I ask her if she is tired and she says yes. I take her down to the kitchen and try again. Her legs give out again. Stef tells me she doesn’t want me to try and get her to walk in the kitchen because of the tile floor. We take her downstairs to the carpet and try again. Bryn starts to walk and falls into the couch. I pick her up and try again. She walks slowly but holds the couch the whole time. It is apparent she can’t do it without support. Now I am getting extremely nervous. I space her in between the couch and the wall so she can’t hold anything and set her go again. She drifts to one side uncontrollably. This is exactly what Brooke did the day Stef took her to the pediatrician when all of this went down.

I am terrified and so is Stef. Stef calls the pediatrician and they want us in ASAP. I bring Bryn (Stef can’t cope at this point) and they bring us right in. Michele, Stef’s sister walks in shortly after holding back tears. She states; “I don’t know if this matters, but Rose (Brooke’s Cousin) had Bryn jumping all around yesterday.” I replied, “This is beyond that, but thanks.” I could tell she was trying her best to find some other solution. The way she walked and drifted to one side had me beyond concerned and some real dark thoughts were passing through my head.

Dr. Kemeny looked at Bryn and did a whole bunch of neurological tests and said she was passing them all just fine. I have seen these tests far too many times at this point and knew what she looking for. Bryn did however keep saying her legs hurt. Specifically her right leg. When I asked her to point to where she pointed at the back of the knee almost every time and the front once or twice. One time she even pointed at her left, so I figured she was just saying something to get attention because she was being asked (like most kids do). Dr. Kemeny asked her the same and Bryn again said her right leg hurt and pointed behind her knee again. Now the walking test was next. Dr. Kemeny and I took Bryn out in the hall and asked her to walk back and forth between us. I had an apple in my throat the size of NY (the big apple if you didn’t get the pun). I was scared to death. Bryn seemed to walk fine. Much better than at the house. We repeated this about 4-5 times and each time she was better than the next but had a definite limp.

We all went back into the exam room and Dr. Kemeny said there is no reason to do any scan and she did not see any neurological issues. She thinks she may have pulled a muscle from jumping with Rose the day before. Michele asks, “Are you sure there there are no neurological issues?” Again, Dr. Kemeny responds that she does not detect anything of that nature. I turn to Michele and say, “TEXT STEF NOW!” Michele does and Stef calls a half a second later. Michele is stating that Stef can’t talk but wants to be sure everything is all right. I make Michele give the phone to Dr. Kemeny because I know she will be calmer if she hears it herself. Dr. Kemeny was great. She opens with “You don’t have to answer me, I know you are there, so I am just going to start talking and explain everything to you.” She pretty much explained that she has no neurological concerns and thinks it may be a pulled muscle. I think Stef was able to talk a little at that point and thanked her and hung up. HOLY SHIT! That was the worst hour of my life barring the nightmare we still live everyday. It was a huge sigh of relief, but the shock of the whole scenario was still lingering. Paula Vieira dropped everything when Stef texted her and came right over. Michele, Bryn and I came home and as I was walking into the house with Bryn I taught her to wipe her forhead and say “WHEW” when she greeted Mommy. I was hoping to cut the tension a little. Stef grabbed her and started crying hysterically. The shock was so hard to shake. Paula was cleaning the kitchen and trying to stay busy. She finally looked at me and fought back the tears. We hugged and everyone settled a little. The four of us didn’t say much for a while. After a short while we started to talk about it and reflect. Stef was very appreciative that Paula had come by. I later learned that when Paula came by, she just walked in and didn’t say anything. She just started cleaning the kitchen (as she was doing when me, Michele and Bryn walked in). I don’t know if she was occupying herself or intentionally not overloading Stef but comforting Stef by being there. Stef was so happy she was there. If it was a calculated move, it was brilliant.

It took me a while to call my mother and then some friends to tell the story. I couldn’t write about it until today. I am just glad it is all behind us.

On a much brighter note, Brooke has been talking a little more each day. She asked to go to Summer camp with Ashton and Bryn tomorrow and we are sending her with Sam. She hasn’t walked at all in a couple weeks, but part of the blame is on Stef and I. We kind of got into a routine of picking her up and moving her. We will get back into working more with her to improve her walking starting tomorrow.

I swear she starting to use her left arm a little more each day. I don’t care how long it takes, I just want her to keep improving.

Steve

B4B press, pics and video!
Written June 24, 2013 12:28pm
There are more pics in the Photo Album and there is so much stuff on facebook but here are links to more pics and write ups. Donna Mellusi has a video on her facebook page with the Bikes going past Peotter’s house on Springfield Ave. I don’t know how to link it, but you can look it up if you want.

Cappo Video 1

Cappo video 2

Mt. Carmel entering

NJ.com promo

NJ.com

NP PATCH

NP PATCH 2

Bikers for Brooke pics!
Written June 23, 2013 10:48am
What an awesome day. The weather cooperated. The bike run was flawless. The food was delicious and there was plenty of it. The people in attendance were awesome and I believe had a ton of fun. The kids were running around smiling all day between face painting, bounce houses, magic, balloon animals, game truck, and much, much more. The people who won raffle items were so excited. The bands were great. Most importantly, Brooke stayed for 2-3 hours and had fun!!!! Everything was perfect! Stef and I can”t thank the organizers and volunteers enough. We really appreciate everything.

300 or so bikes went on a scenic run following a police escort. Many Bikers told me it was the best and most organized run they went on. Sean mapped out the perfect route. Every town we went through heads were turned and jaws were dropped. Every town we went through had people lining the streets with signs in support of Brooke and encouraging messages.The police blocked off every side street and intersection and pulled all oncoming traffic over to the sides of the road. We had the road to ourselves, both sides! Cappo has a video of us pulling out of the church. When he sends it to me, I will post it. The Merkel brothers, Forest, and crew had all the food ready to go we we arrived. About 450 people were fed in a matter of 20 minutes or so and the food was flowing all day long. Bikers have said they have had to wait 2-3 hours to get food in other runs. It was a well oiled machine.

Anyway, here are the pics thanks to AJ. If anyonw has pics please email them. I will try and post as many as possible. SLIDESHOW

Thank you everyone!

Steve

Bikers for Brooke tomorrow!
Written June 21, 2013 9:57pm
It’s amazing how all of this is coming together and the immense amount of work everyone has put in so far. The weather should be great and everyone will have an amazing time. Stef and I spent some time over at Mt. Carmel while some final tent set up and organization. Thanks to Andrew Tullo for loaning me his Honda Shadow for the run. Donny, Sandy, Sean, Alissa, Dave Merkel,
Becky, and the whole crew have put endless hours in and we all get to enjoy the day tomorrow.

Stef and I have been on the fence about whether or not to bring Brooke by. We finally decided that we are going to give it a shot. We ask that you please respect her space. I know you all want to see her and wish her well but it is incredibly overwhelming for her. She doesn’t like the attention or the spotlight. If she gets overwhelmed, she will cry and stop talking to everyone, including us. Please feel free to approach Stef or myself anytime, but we have to ask that you keep any correspondence with Brooke to a simple hello. She won’t answer you and may look away or down but if I think she will be able to handle it, if she thinks people are talking to us and simply acknowledge her. She probably won’t be there long but we want her to see the event.

Stef and I are excited for tomorrow and we hope to see a great turn out.

Steve

All sorts of updates
Written June 17, 2013 6:14pm
The pic above is from a bake sale at The Connection in Summit run by Kelly Kailif.

Kara Corridan, Kerry Carroll’s wife wrote this for Parents Magazine BROOKE ARTICLE. We appreciate her writing this and hope we start to get some awareness.
Bikers for Brooke Route:

The Itinerary for Bikers for Brooke:

Steve

We were supposed to be at the NIH in Maryland for Brooke’s scans all this week, but Stef and I decided in the beginning of last week we were not going to go. It seems as if we have been waiting for this week for months, and we have. Brooke has a 6-9 month prognosis and we had to wait 5 months to be seen. Just another shining example of how the government is lending its helping hand. The NIH (National Institute of Health) study is government funded. We originally inquired to go back in February. This request was put off until this week, largely in part because they were unable to get an anesthesiologist. Imagine that, the NIH backed by the US government can’t get an anesthesiologist for a major study on DIPG inflicted children.

Anyway as time ticked by, we started to question the benefits for Brooke. We felt that although these scans would probably give us some more insight as to Brooke’s tumor in particular, there still was no treatment. Quite frankly, we would have heard one of two things; Brooke’s tumor is stable or Brooke’s tumor is progressing (followed by a shrug of the shoulders). We really don’t need to hear either. Besides, they still didn’t have an anesthesiologist for her scheduled pet scan on Wednesday. They wanted to know if she could lay still 1 1/2 to 2 hours in the pet scan machine by herself. They were referring to my 4 year old daughter who will start screaming at the top of her lungs if Stef or I are not within an earshot of her at any time. Plan B was to have us drive back to Maryland the following Wednesday just for the pet scan.

More importantly, we did not want to drag her through a battery of tests throughout the week. There was of course the possibility that we went there and they couldn’t do any tests involving anesthesia because of her accelerated respiratory rate. This wouldn’t have been an issue if we didn’t have to wait 5 months to get an appointment. This may not affect us too much, but I am sure that some future DIPG children would have liked for the NIH to collect as much data as possible. She kind of has a comfortable routine she is following and we didn’t want to disrupt it. I don’t need a scan to know how she is doing, I see her every day.

We have used the morphine quite a few times. It is a very low dose but seems to help. We will hopefully be able to cut that out as well with one of our more natural treatments you can read about in one of the following paragraphs.

We were also contacted by Foundation Medicine in Boston. They finally received our biopsy sample from Weil Cornell Medical Center. Weil Cornell withheld the sample for two weeks because the $11.58 shipping charge was not cleared. Don’t get me started on this one. I would have friggin drove to NYC and paid it myself if anyone told me if it was “A” delayed and “B” 12 bucks was the issue. Not that it would have mattered, Foundation medicine could not detect any DNA because the sample was too small. They repeatedly contacted Weil Cornell for another sample only to be told there was no more tissue left. I was under the understanding that we had 7 samples of tissue available at our discretion. Now I have to go back to my old email and dig up the exchange to fight the fight over where are the other samples?

A little more upbeat, we have narrowed down two non traditional treatments we are going to start Brooke on. Both are natural plant based medicines. One I can explain and the other I am unable to write about at this time. At a later date I will reveal more and you will understand. Actually I am not sure I should be writing about this either, but I am. If you were in Europe and had cancer, more than likely you would be put on Iscador. Iscador is an extract from mistletoe that has cancer fighting agents. It also boosts the immune system. Robert found this and he and I have been researching this since about February. It is not FDA approved and therefore not used in the US. I found a way to get it and we are going to give it to Brooke when it arrives. We will administer it with an injection similar to the way a diabetic would.

We also went to a place in Whippany Allen Galorenzo hooked us up with. Brooke was supposed to be fitted for a walker, but she would have no part of it. Instead she gravitated toward a motorized chair. She had a sample demonstration and was off. She quickly learned the joystick and cruised up and down the hall. Since she was so good, she went out to the parking lot and chased Stef in circles for a good 10 minutes. If my phone didn’t suck I would have posted a video. Tomorrow they will deliver the demo and she should have her own in about 2-4 weeks. Hopefully insurance will cover the cost of 20+ grand, but if they don’t we have enough money from all the fund raisers to pay for it. THANKS TO ALL OF YOU!

I think she liked having a little bit of freedom and mobility. She was all smiles while in the chair. I do however have some mixed feelings. I want her to have fun and be independent, but I don’t want her to abandon trying to walk. We will really have to push her to walk a little more each day. My next purchase is going to have to be a device I can put the chair on that connects to my hitch. If I can’t find one, I know some people who can make one for me.

There is a ton more to write, but I am done for now.

Don’t forget, this Saturday is the Bikers For Brooke rally. There are signs up in New Providence across South Street and on the Community Bulletin Board.

We hope to see you all there!

Bikers for Brooke raffle items
Written June 13, 2013 9:47pm
Raffle items are ready to be viewed. Click here to see all the wonderful stuff! B4B Raffle items.

Steve

Brooke gets ink (on her daddy’s arm)
Written June 12, 2013 1:17pm
I had to meet my cousin R.J., so I figured the place for that was his tattoo shop in Toms River, Tattooville. He’s got a great shop. This was the first time I have been there. They really took care of me.

Brooke was breathing heavy yesterday and the home nurse we just started having just happened to be there, She told us she has heard of and used the morphine to control breathing. She suggested we do it while she was there in case we had any questions. It was no big deal and also worked. After the dose Brooke’s breathing regulated about an hour later.

Mayor Brooke Hern proclamation video.
http://vimeo.com/68099215

Brooke has a day dedicated to her in a proclamation!
Written June 11, 2013 7:17am
Last night a town meeting mayor, Brooke Hern announced a proclamation that June 22, 2013 will forever be known as Brooke Healey Day. This will be broadcast on the local cable channel. When I get information on when it airs I will fill you in. I also think that we can link the video of the event and just post it here.s most of you know June 22, 2013 is the “BIKERS FOR BROOKE” rally and family picnic.

Brooke had a rough time Saturday night and Sunday. She is so bloated that she developed a hemorrhoid. I think we have it under control now with creams and such. She has much discomfort because of her bloating and can only relieve it when she goes to the bathroom. Stef gave the analogy of a pregnant woman who also goes to the bathroom often even though not much comes out. Any additional pressure is very uncomfortable. Because her hemorrhoid hurt so bad she was refusing to go to the bathroom and then became gassy which created more discomfort.

It’s just not fair that she has to go through all this. Like she doesn’t have enough to deal with. She seems better this morning. Hopefully we can keep it under control.

Steve

Wow, Brooke reaches Thailand!
Written June 6, 2013 10:27pm
This link is pretty cool. Sarah Lovett was a student of mine at Madison a number of years a go. I just received this link of what she is doing in Thailand, Take a peek.
http://art-relief.blogspot.com/2013/06/animal-cards-with-young-lions.html

Kaity’s tat!
Written June 6, 2013 8:34am
Just got the pic of Kaity’s tattoo.

Lis got inked and Brooke loves the Yanks!
Written June 5, 2013 8:57pm
Our Au pair, Lis just got this tattoo on Tuesday. Donny’s daughter, Kaity also got one a few weeks back on her wrist that wraps around like a bracelet and says “Believe”. This was Lis’s 1st tat but Kaity has a few already. I might be next, you never know

Me, Stef, Ashton, and Brooke went to the Yankee game today curtsey of Robert and his amazing tickets. The food in the Legends buffet is top of the line. We ate like champs. No joke. I am going to make you hungry right now. Lobster tails, London Broil, potatoes, corn, Sushi, Shrimp (both fried and peel and eat), Fries, Chicken fingers, fresh fruit, bread, and chocolate covered strawberries were all at our table. Then outside you can toss in ring pops, cotton candy, gatorade, water, ice cream, and a few souvenirs for the kids. There was not much left over either.

We figured the kids would want to go after the first inning, but both were interested and wanted to stay. The yanks jumped out earliy thanks to a couple of homers that accounted for 5 runs. They were up 6-0 until about he 6th. The Indians got as close as 6-4 and think that is where it ended. We stayed until the top of the 8th and had convince the kids it was time to go to beat rush hour traffic and the the game traffic. They talked about the game about half the car ride home and then they crashed and both were asleep. As soon as we got home they both wanted dinner. I couldn’t believe it after what we all just ate. Anyway it was a great time. Thanks again Robert!

Brooke has been pretty status quo the past week or so. I really think she is regaining some strength in her left hand. I have been asking her to squeeze it for months now and she has had no response. I noticed she had a little grasp of my hand while I was helping her walk the past week or so. Today I asked her to squeeze it and she gave me a pretty good crunch. I pushed the envelope and had her do it 10 times in a row. I have to admit the tenth attempt was very faint, but she definitely squeezed a little.

We will be in Maryland for Kathy Warren’s study the week of 6/17-6/21 and will be at the Bikers for Brooke event on Saturday 6/22. It should be fun for the whole family. Donny, Sandy and the crew have been working their butts off to pull this thing together. They have enough food to accommodate 1000 people. There is a big banner up on the New Providence community sign across the street from the Presbyterian church. There will be a banner across Springfield Ave soon and there will be a police lighted sign advertising as well. There are tons of kid friendly features and lots of great raffle prizes. Three bands will be playing in shifts and much more. I really can’t do it justice by typing about it. Please visit the Bikers for Brooke website for more details.

I really hope to see you all there. Remember you do not need to ride in the run to enjoy all the fun at the after party!

Steve

Brooke chillin’ in her personal pool.
Written May 31, 2013 10:49am
Brooke’s had fun down the shore. We stayed from Sunday til Tuesday morning. She wants to go back. In the meantime she was relaxing in her personal pool in the backyard yesterday.

Her breathing is manageable. She has not been anywhere near the 50’s like she was Thursday of last week. As I mentioned earlier, Lisa Kavalieros, mother of Ellie seen in the awareness video, helped me with her experiences with Ellie’s high respiratory rate. From that correspondence, I was able get a morphine prescription to help control the breathing if we are in that circumstance again. I hope we never use it. If I did not have Lisa’s email and her doctors to refer to I don’t think it would have happened. The staff at MSKCC has never used morphine for anything other than comfort and was reluctant to prescribe it for breathing. The prescription is a very low dose of course. We all know what high doses of morphine can do. When weighing Brooke to make sure what dose to use, I was surprised she was up to 48 pounds. When this all started she was 30-32 pounds. If you do the subtraction you might say 16-18 pounds is a lot but not too crazy. Think of it this way, it is a 160% increase of her body weight in 5 months. If a 200 pound man had the same % increase he would gain 120 pounds in 5 months. 200 to 320 is more than significant. This brings us back to the steroid issue which is the reason for the weight gain.

Anyway, in talking with Donny yesterday we decided that we need a national stage to promote awareness. You may have seen his facebook message, but here is what we are looking for; We need someone who knows people in the matioal media stream. ABC, NBC, FOX, CBS, or possibly major newspapers or magazines to run ads. Ideally, we would like for a major network to run a story about DIPG and funding (or lack there of). If anyone can get us in contact with people in these fields, please contact Donny Curcio at Bikersbrooke@gmail.com

Thanks,

Steve

Brooke had a good night.
Written May 26, 2013 10:28am
Brooke’s breathing dropped to 20 just after my last post and continues to be normal at this time. I gotta admit that was a pretty hairy couple of days. We are going to celebrate by heading down to the shore in about 5 minutes. In the meantime, Lisa Kavalieros who is the mother mother of Ellie Kavalieros, a victim of DIPG, shared her daughters CaringBridge website along with some other great information. Her cousins, Erik and Katrina made this awareness video I would like to share with everyone. Donnie post this on the Bikers for Brooke website as well.
DIPG AWARENESS VIDEO

Steve

Maybe some relief?
Written May 25, 2013 10:08pm
I just came out of Brooke’s room. She is sleeping and her rate is at 23. Wow does that feel good!!!! I also read a post on her caringbridge site a woman named Lisa left. She was nice enough to leave her phone # and share her experiences when I called. Her daughter had the same breathing issues when dealing with her DIPG. They were able to manage it at home with some morphine pills. She told me her daughter tolerated it well and it helped them control the breathing. I know her doctor and have spoke with him on the phone in the past. This puts my mind at ease a little. I at least have an avenue to explore. I may be a little ahead of myself but this may mean we can get her off these steroids too!

Wishful thinking, I know, but I am feeling pretty good right now.

Steve

Maybe some relief?
Written May 25, 2013 9:30pm
We gave her 2 mgs at 5:30 and I went out to buy some Benadryl after receiving messages from 3 different people indicating it could help slow the breathing. When I got home Brooke was breathing a little bit better so we held off on giving her anything. She has been a steady 30-32 for over an hour and is close to falling asleep for the night. Well at least until she gets up to pee. I would love for the respiratory rate to be in the 20’s but I am thrilled it is where it is at now. This is manageable!!!!

Steve

Breathing issues continue.
Written May 25, 2013 5:38pm
After writing that post last night I called MSKCC. They wanted us to come in an do a CT scan or an incomplete MR scan to check for hydrocephalus. They can’t do an complete MR scan because they don’t have an anesthesiologist on call. I told them we were not coming because I know it is not a hydrocephalus issue, she does not have any other symptoms. We have been dragged through this routine far too many times. After arguing about not dragging Brooke into the city at 5:00 on a Friday night, memorial day weekend no less, to run the scans and wait around for someone to read them I asked what would you do if it were not hydrocephalus.The answer of coarse, more steroid. I said then lets cut through the chase so I don’t have to drag her back home around, who knows midnight, and give her the dose of I steroids I need. I have to wait for a call back so she can check with the neuro oncologist on call. I know what worked last time, 5 mg followed by 2mgs twice a day. I wrote that in my last post. I make a few other calls while I am waiting for the return call and some people I trust are agreeing with me to not drag her in and just give her the 5 mgs. One of them is an alternative Dr. we have been using, Dr. Garland. He is also sending some remedy overnight that should help her breathing. We gave that to her today and hope it does something. They call back and recommend 4 mgs followed by 2mgs twice a day. I gave her 5mgs followed by 2 mgs twice a day. This coming from the guy who always wants to cut the dose more than ween schedule.

This was around 5:30. We were expecting results by 7:30-8:00. That is how long it usually takes her to respond. 8:00 came and went as did 9:00, 10:00, 11:00, etc… through the night. Her respiratory rate went as low as 30 but stayed in the low 40’s most of the night. She slept as well as she normally does (getting up to pee 4-5 times a night), but the respiratory rate never fully recovered. Stef and I are getting pretty concerned throughout today and call MSKCC again. They reiterate there is nothing they can do but want us to come in because they would feel more comfortable. We again ask, “What can you do?” and get the same answer, “Nothing.” Obviously we were ready to get up and go out the door on several ocasions in the past two days, but talked our selves out of it. If we thought there was a benefit, clearly we would be there in a heartbeat. We are much more interested in Brooke’s comfort than the hospital, doctor, nurse, or whoever.

I can’t find anything online that would decrease a respiratory rate. There is plenty to increase but nothing to decrease. Alcohol (out of the question), morphine (not without being under a doctors care), or some breathing exercises are all I can find. There is no way I could get her to do the breathing exercises and that is a temporary fix anyway. The concern over the increases respiratory rate is stress on the heart, lungs and other organs, and lowred CO2 levels from excessive exhaling. Robert fond something about baking soda increasing CO2 levels, we are waiting to ask about that in our next phone call. We don’t even know if she had low CO2 levels (although she did last time) unless we get blood work done.

Anyway, we get a call from the fellow on call. She said she spoke to Dunkel and said we should not be alarmed about the breathing unless we see other symptoms. Turning Blue, extreme fatigue, vomiting, can’t eat or drink and some other stuff were the signs relayed to us. Clearly if any of these things were going on we would have been at MSKCC by now. They feel the tumor or swelling or something is pushing up against the area that controls the respiratory system. We knew that from the last scan, but seemed to resolve it with steroids to reduce the swelling. They say we can try 2 mgs three times a day instead of twice. This of coarse after I snapped on her for reading some disclaimer to me for the fourth time in a matter of minutes. All about how they recommend we come in so they can evaluate her and should call 911 if there are any problems that arise and some others legal mumbo jumbo. You can imagine my response as I kept cutting her off mid sentence. “Don’t worry, you are covered. I got it. You already said that. I said you are covered. Just give me the dose!”

I guess we feel a little better that it doesn’t seem to be an emergency about the breathing.

I hope it regulates soon.

Steve

Brooke is having breathing issues again.
Written May 24, 2013 2:52pm
Another steroid weaning issue I hope. Everything was going smoothly since receiving the call from Dr. Warren. She warned that weaning too quickly could lead us to think it is progression rather than too quick a taper. We did proceed slow but hit the typical hiccup in the weaning process. Brooke was at 1 1/2 mg in the morning and 1 mg at night all last week. Monday we dropped to 1mg in the AM and 1 mg at night. Monday was fine, Tuesday pretty good, Wednesday there were some small respiratory issues that seemed to resolve itself, and of coarse Thursday we have issues leading into today.

Brooke started breathing rapidly yesterday afternoon and it never went away. Her respitory rate should be in the mid 20’s and she was in the 30’s and never came down as she had earlier in the week. Rather she went into thr 40’s and eventualy hit 50. We called Urgent Care at MSKCC and spoke with the doc on call ay about 9pm last night. We decided to let her rest, since she just fell asleep and the rate at 36 or so from near 50. About 2 am we had to call back because her respiratory rate jumped again into the mid 40’s. At that time we went ahead with a bolus of 2 mgs. That is basically a one time higher dose to shock the swelling back in check. That didn’t work. We called again this morning and gave another 2 mgs. Her rate has dropped as low 32 but goes back to the mid 40’s. We also took her in to have her vitals checked by our pediatrician in lieu of driving into the city. Everything checked out and our pediatrician called into MSKCC to relay all information.

She is sleeping right now, but her respiratory rate is still in the mid 40’s. We are waiting for a call from MSKCC as a follow up from this morning. As luck would have it, Mary is not in yesterday or today. Cheryl (filling in for Mary) told us earlier that there was nothing they could really do other than increase the steroid or prescribe oxygen. She is geting enough oxygen, so they didn’t really feel that would help anyway. The only difference between this episode and the the similar one two weeks ago is that that bolus was much greater last time (7 mg compared to 2 mg). Anyway, I will bring that up when they call. Better yet, I am going to stop writing and call right now.

Steve

Thoughts from Stef…
Written May 23, 2013 1:12pm
I’d like to update everyone on Brooke, and all of us, as per my perspective. I know so many of you care about her and all of us. I think about that everyday.

I want to share this update in a “thankful” way. I am not writing this to “seem” like I am so strong. I’m not. I am doing what any mother would do. This is how I can do it. By focusing on the positive.

I am thankful that Brooke is at preschool today, and wanted to stay extra long for lunch. I am thankful that her teachers accept her there and stay longer for her and get extra help for her to facilitate her needs. I am thankful that the kids accept her and that if they ask a question about her appearance the teachers answer in a way that makes it as painless for Brooke as possible.

I am thankful that her teachers from every year that Brooke has been in school still care for her so much. When I pull up to her old school, and her new school, and see Believe in Brooke magnets on cars, I am literally stopped in my tracks. I just can’t believe it. When I see a “random” third grader wearing an “I wear Grey for Brooke” shirt, I get choked up. When a fifth grader rings our doorbell and drops off money from his school project that was about Brooke, or another little girl sends us the money from her lemonade stand to help Brooke, or a class of fourth graders send us a packet of homemade cards…..I am so thankful that we get to witness this.

I am thankful that we have a tentative plan in place to get Brooke to summer camp with an aide. I hope she can go and I hope she has a good time.

I am thankful that Brooke can walk with assistance, and that she wants to keep walking. I am thankful for her therapists that are so kind to her and still get her to work.

I am thankful that Ashton and Bryn are so caring. Ashton wants to help her so much. He treats her like gold. And Bryn wants to help her too. She rubs Brooke’s hair and says “cute”. Brooke then proceeds to smack her. Brooke has always been the one in charge and she doesn’t want sympathy from anyone….haha! She does enjoy telling Ashton what to do for her though. That still fits into her personality just fine. And he jumps to it. He always has.

I am thankful that we have so many people to help us, and that I have gotten over not wanting to ask for help for the most part.

I am thankful that there have been some wise people who have come into my life, and others who have always been there, who have been able to say things that make sense in a situation that doesn’t make sense. From words of inspiration, to logically looking at medical treatments.

I am thankful that I know so many think about us, care for us, pray for us. It does not go unnoticed. I do not know everything that everyone has done…but I learn more everyday. It helps.

I am thankful that people treat us normally and that people are so understanding, caring and generous.

I am thankful that Steve has not fallen off of the roof of our house yet. If you drive by you notice ladders…he is trying to get rid of carpenter bees….

I am thankful that when I left work for Brooke’s doctor appointment on Jan 14, and have literally not been able to re-enter the building since then…I have not been made to feel guilty ONCE. That’s been kind of hard actually. It’s something I had done almost everyday for 15 years, and I had to cut it off totally. I think it might be too painful. It’s something that I have lost right now that was such a big part of my life. I don’t mind though. I have only one focus right now. And I am perfectly content with that. Although, stay at home mom is not my thing. I have a hard time with patience so I have to work on that! That being said, the Meal Train has been so great. It helps me so much. I added a bunch of dates…hint hint…no, seriously, it has saved me hours that I am able to spend with the kids.

I am thankful that Ashton and Bryn have been able to participate at my work, in performances, and even though I can’t go watch them, they have people who take them and care for them just about as much as I do. (See I’m not that strong…I can’t even go watch them in a performance! Oh, and I also forget everything…I think Bryn doesn’t have a fork in her lunch box as I am typing this.)

I guess I am also thankful that I can share this with you. It has been another hurdle I have crossed.

I am thankful that Steve and I can still work together to care for our kids. And we have even gone out to dinner.

I am thankful I have made it to the gym a couple of times.

I am thankful I have all three of my kids with me, that we packed three lunches today.

I am thankful that we still have hope that it is just taking her extra long to recover from RT and that she will continue to improve.

Brooke is the smartest, wisest girl I have ever met. (Of course) She asks questions about medical equipment that is uncanny…”Why are they using that color needle for my port?” ….WHAT??? I don’t know!!! And “I’d like to learn sign language so that if I have trouble finding my words, I will be able to tell you what I need.”….Ummm..OK??? That was Monday night. Since then she has already mastered quite a few signs. She is able to manipulate almost any situation to get what she wants. She calculates how she will do it, and then carries it out. It is a full time job for me to negotiate around her to make sure we are always doing what is best for her. She remembers EVERYTHING. She is thoughtful, kind, beautiful, wise, silly and she knows how many people care for her. In her heart, she does know. She does not like the attention though. That is why we do not go to a lot of “events”. When she knows something is about her, she shuts down. It doesn’t mean that we don’t appreciate it though.

I just read over this and this format was kind of “annoying”…whatever. Again, believe me, every minute I’m not walking around being thankful…but I never have responded well to “negative” and this is how I am getting through this. I can post next time about how I don’t get any sleep and I’ve probably gained ten pounds, when I thought I would have lost ten pounds…But I probably won’t. I just kind of mentioned it there and that’s all I got for now.

Now that I got that out, I am going to wash the tears off my face…thanks for listening. Please keep praying for Brooke. Hopefully we will see you at the Bikers for Brooke event. I can’t even tell you how in awe I am of the friends and family that have been putting that together. I have literally had to look the other way and just accept the time and energy that they have been putting into this, as I had to do for the fundraiser at the Summit Hotel, and countless other things that have been done for us. That has been difficult, to accept all of the time and energy that others devote to us.

And don’t forget to keep praying every Saturday at ten. People all over the country and the world are doing it. I hope that if you do it, you feel that are you a part of something special. We do.

Stef

Brooke is doing well and Barbie had a girl!
Written May 14, 2013 12:32pm
Aside from the steroid irritability Brooke seems to be getting better everyday. She is talking more each day and the last three days she has been asking to walk more. Her foot is aslo been more limber than it has in the last few weeks. She still gets up 4-5 times per night. I think she needs to pee but has a hard time recognizing so. We usually bring her right to the bathroom and she settles down after going. A couple of times we couldn’t calm her unless she ate something. She is pretty bloated right now, probably as much as she ever has been. That certainly creates issues with how mobile and comfortable she is. On mother’s day she asked for a pink car she could drive by herself. So before going out to lunch we stopped at TOYS R US and picked up an electric Mini Cooper. She loves it. That night she asked me to build her steps so she can get in by herself. Today at PT at Roberts School in New Prov. she walk unassisted about 10-15 feet over to me when she was done. The therapist, Ben, was walking with her in case she fell, but really did not do much to aid her. We are going to keep practicing a little more each day.

Barbie was scheduled to be induced later this week, but her water broke this morning and now her and Greg have a little girl. I think Stef said Gracen was her name, but I am still going with Stevette. Everyone will catch on if I stick with it.

Steve

OK I wouldn’t call it good news, but certainly encouraging
Written May 9, 2013 5:36pm
I just got a call from Kathy Warren of the NIH. I had Brooke’s scans sent down to Maryland for her to view. As I mentioned in the previous post, Dr. Warren is one of the best and highly respected in the field of DIPG. She has read hundreds if not thousands of DIPG scans. Possibly more than anyone else in the world. In her words: “I AM NOT CONVINCED IT IS PROGRESSION.”

Now there is still a possibility it is, but she explained that there is a lot going on in that area. Necrosis (cell death) is still apparent in her opinion. She also identified a few cysts, which is a good thing. Sometimes as the tumor cells die they turn into cysts. She explained that the cysts can grow and shrink which pushes up against the PONS and and other things in that area which can create symptoms. She felt that the increased blood flow on the perfusion could be explained by all of these things. Of course there is is still a possibility some progression could be mixed in as well, but as I stated earlier and Dr. warren did at least three times in my conversation with her, “I AM NOT CONVINCED IT IS PROGRESSION.”

Dr. Warren recommended we do nothing for a month until we can get another scan and get a better read off the comparison. I reminded her Brooke was coming there in late June and she felt we should just wait for that scan provided there are no major obstacles between now and then.

We have pretty much decided to go that route anyway but at least now there is more comfort in that decision.

Steve

Looking for a trial…or not
Written May 9, 2013 1:59pm
It has been a crazy week since learning about Brooke’s tumor growth last Friday. I spoke to Kathy Warren of the NIH (National Institute of Health) and she said that the only way determine tumor progression is to look at the perfusion and see if there is increased blood flow. Kathy Warren is a leader in the field of DIPG and I have been in contact with her since about February. She is conducting a spectroscopy study where they can tell how the tumor is reacting in terms of being stable, shrinking, or progression. Brooke is scheduled to start her scans June 19th in Maryland at the NIH. This was the earliest time we could secure when we started looking at dates back in February.

I finally was able to talk to Dr. Dunkel yesterday and he confirmed that the perfusion scan showed some increased blood flow. I had to drive into the city and meet with him, but that is whole other story I don’t want to get into right now. The growth is slight, although is there. More importantly, Brooke is stable as far physical symptoms. Her breathing is back to normal and we started another steroid ween. I am actually indifferent about the ween at this point. I used to get excited and map out the days and times we would continue to ween only to have a major setback or disappointment along the way in terms of upping the dose time and time again. So now she is on ween. I don’t know for how long or if we will increase or decrease anytime soon.

I also spoke with Dr. Phillips, head of pediatric brain tumors at CHOP, Dr. Amar Gajjar, head of pediatric brain tumors at St. Jude’s, and Dr. Owren Becher, head of Dipg lab research at Duke University. None of them had any enthusiasm for any current clinical trial but offered to help with any future questions about trials I might have. This is precisely why Stef and I didn’t rush Brooke into a clinical trial in the first place. We didn’t want to compromise her immune system with the toxicity of any of the drugs in any of these trials with unknown or vague results. Dr. Dunkel did disagree with Dr. Gilheeney in that we don’t need to rush into a clinical trial within the week. Especially since she appears to be fairly stable at the moment. Quite frankly, yesterday was the best I have seen her in weeks. She was full of smiles and talking more than usual. We had some family over for Ashton’s birthday last night and she was interacting with everyone and playing with the other kids downstairs. She has not been so outgoing in weeks, if not months. I hope it continues.

Dr. Dunkel did suggest three trials to look in to. None have generated any real excitement on my end. Dr. Gilheeney recommended three others, and I have four on my list of possibilities to explore deeper. One trial is in Australia. Here it is if you want review it 08_CHW_22_GENE_THERAPY_TRIAL_PARENT_INFORMATION_SHEET_V5-1.pdf
209.7 KB
When I asked two different doctors their opinion, here were the responses:

Question: Can you review the trial being conducted in Australia and give me your feedback?

Doctor “X” response:
Mr. Healey: Thank you for sharing this with me. It’s a very interesting clinical trial and I would be happy to have my patients consider participation, but obviously the geographical location is likely to be problematic for most.

Doctor “Y” response:
This protocol assumes that the resistance mechanism to temozolomide ( i.e. the reason temozolomide does not work) is the enzyme MGMT ( O6-BG inhibits MGMT) but there is no evidence for that in DIPG. This protocol can work in adult gliomas where there is evidence that MGMT is the resistance mechanism to temozolomide but not in DIPG. The gene therapy approach to the bone marrow is clever but there are not looking at the correct drugs for DIPG. There was already an American study looking at temozolomide and O6-BG and it did not work.

So basically I feel like I am chasing my tail.

We did decide to have Brooke’s biopsy sample analyzed by a firm in Boston called Foundation Medicine. They will do a molecular analysis of the tissue and recommend drugs or possible treatments, protocols, or trials availible. Sounds like a homerun right? The problem is that it is possible that they can target what we need to attack, but might not have the weapon to do so. I still feel this information would be useful. I may be able to light a fire under someone to focus their attention to a specific gene or protein. I have the foundation Mediccine reports of two other patients with DIPG. Both had recommendations of treatments, but some of the recommendations were drugs being used in current trials that were not showing great promise. They also showed a specific gene mutation or expression of a certain protein with unknown methods of attack. Anyway, with absolutely nobody willing to stick their neck out and say that one trial is better or has more potential than another, we will get this test doen and hope it at least points us in the right direction. Everyone is worried about using the tissue we have fromt the biopsy in case we need it for something in the future and I am am tired of it. We have the tissue. We are going to get what we can out of it. If some miraculous trial pops up where we need more tissue than we have, we will get another biobsy. Easier said than done, bit that is the deal.

Hopefully we can get Cornell to send the tissue to Boston early next week. Once the report is available, we will determine if a clinical trial is warrented or we just monitor Brooke until mid June when Kathy Warren can do her scan.

Steve

Not one bit of good medical news since 1/15/13.
Written May 3, 2013 1:29pm
Brooke has progression (tumor growth) in two areas. The first is the area where the 2cm X 4cm bubble is just outside the PONS and the other is on top of the PONS. The area where the bubble is mixed growth and swelling. It is not known if the swelling will subside and she will gain some physical ability back. Although the growth is minimal at this time it was suggested that we start some clinical trial within the week.

I asked why RT seemed to work in other areas but not these. I was told that the RT was directed at where the tumor boundaries were expected to be and a little beyond, but it must not have encompassed these areas of progression.

Three different trials were suggested and I have a fourth I need to get myself up to speed on over the weekend.

That’s it.

Steve

Another run on this crazy ass roller coaster.
Written May 1, 2013 9:29am
Brooke continued to breath heavy until about midnight despite the 5mg at 5:30 pm and the 2mg at 9:30 or so. Her respiratory rate stayed at or around 50. At midnight it came down to 35. Still high but much better. She woke up screaming about 4-5 times last night. She would squeeze either me or Stef and clutch on to us clearly scared out of her mind. It would take her a while to calm down and would only fall back asleep if she was laying on Stef in the bed or on me in the rocking chair. Which by the way is the most uncomfortable chair in the world. I may go buy a chair today we can sleep in all night.

She would eventually fall back asleep but would wake up if you moved ever so slightly. I figured out she was uncomfortable because she had to go to the bathroom but when we asked her if she had to she would say no. We eventually just brought her to go when she would wake and and it seemed to be a little easier on her afterwards. Guess what makes her her need to go so often……you got it…1st guess…the steroid. This morning her respiratory rate is in the low 20’s. This is the lowest since I have been keeping track on Saturday. She seems fine with the exception she has more of a droop in her face and I swear I can see her swelling up already.

We are sending her to her OT and Speech today as well as having her home school instructor here. She needs some normalcy in her routine and I think she is stable now. Actually much better than when we sent her yesterday morning.

Hopefully no more posts until Friday with the results of the MR scan.

Steve

It just keeps getting better.
Written April 30, 2013 5:28pm
Brooke started breathing heavy again. We called Mary and she was meeting with the tumor board (group of neuro oncologists discussing all their brain tumor cases). We are now giving her 5mg and another 2mg tonight. I can’t believe we are giving her 7mg in the next 3 hrs. on top of the 1mg she had this morning. We are to continue with 2mg in the am and 2 mg in the pm until Friday when we see what we have here.

Every time we are within striking distance of getting off something comes up. EVERY TIME!

Steve

Not really what we wanted to hear.
Written April 30, 2013 4:12pm
Brooke slept through the night and was breathing normally all night and continues to now. They ran the blood and urine tests today. Another doctor read the MR scan from yesterday and confirmed the ventricles are fine and there is no need for a shunt. Her respiratory rate is now in the low 30’s from being as high as 55 and is under control. From breathing so rapidly, she was exhaling too much CO2 so the count dropped to 15. Today it was 16. Not ideal, but improving and certainly stable. 24 might be a comfortable range.

To clarify from yesterday’s post, the tumor did not shift, the swelling shifted. In other words the ventricle area that seemed to be an issue weeks ago is stable and has shown so over and over with all these CT and MR scans. The area of concern is the pseudo-progression area. When meeting with our radiation therapist, Dr. Wolton, she said: “I am very dissappointed Brooke is not doing better this late after RT.” She went on that her symptoms should have improved drastically at this point (6 weeks post RT). She also added that we should explore some phase I trial to try and accomplish what the RT didn’t. Her advice as to which one was, “I have have no idea.” She did however say it is possible this is still swelling from the RT, but if it doesn’t clear up in 1-2 weeks that is probably not an option.

We then went upstairs to speak with Mary and Dr. Gilheeney (Dr. Dunkel is away until next week). Dr. Gilheeney showed us the scan from 1/15/13 next to the scan from 4/8/13. In the initial scan, there is an area that protrudes toward the cerebellum that was considered atypical. It also enhanced strangely compared to a typical DIPG. This was the reason we went ahead with the biopsy way back when. On the scan 3 weeks post RT, there is a 4cm by 2cm bubble on the outside of the PONS in that exact same area. This is what they were confused over being progression as compared to pseudo-progression. Although the two MR scans we took yesterday and last week were not directed at that area and rather a snapshot of the ventricles, they did tell us that what they could see made them optomistic it was pseudo-progression. Now the story seems to change. Dr Gilheeney stated he is very concerned about this area an ordered a complete MR for this Friday. He said that that scan will confirm just exactly what we are dealing with. I asked, since this area in question seems to be completely outside the PONS, can we operate. He indicated no, but I will speak directly to our neurosurgeon for that call. That is if we in fact get bad news on Friday. I am still not convinced that this isn’t post RT swelling or her body fighting off what came outside the PONS on its own. That has pretty much been our strategy past RT. We are doing our best to give her the treatments and supplements that will allow her to do just that. She has done nothing toxic to her body aside from this f****** steroid I still want to get her off of.

Anyway, Friday is a big day to say the least. We will hear Thursday night what time we are going.

Steve

Brooke can’t catch a break.
Written April 29, 2013 9:02pm
Brooke has had some labored breathing since Saturday night. She was a little off when we dropped her at Michele, Joe, and Rose’s house for a sleep over. She didn’t sleep more than 45 minutes at a clip and was up most of the night with Michele and Joe. She rested with Stef all day Sunday but the breathing never really got better. She takes small quick breaths in a rhythmic fashion. It is like she can’t catch her breath and keeps breathing real heavy. Stef called MSKCC last night and they said just keep an eye on her and maybe it will go away like it has in the past. Other episodes never lasted but a few hours and this one was nearing 24hrs. She never got any better into the night so we called Urgent Care at MSKCC again at 2:00am. I spoke with Dr. Miller, the physician on call, for about 30-40 minutes and we both felt there was not a need to rush her in at that time. If we did go, they were only capable of doing a CT scan and that was probably not revealing enough. We would have to wait until today to get an MR anyway and there really isn’t anything they can do for the labored breathing. We both felt that it was not an issue related to pressure in the brain because there were no other symptoms that would indicate so. I suggested we try some Tylenol. I thought that if the pressure in her abdomen (from being bloated from steroids) could be creating the stress on her respiratory system, and the Tylenol might give her a little comfort and allow her to sleep. She also had some stiffness in her left foot and hand we thought was cramping from lack of use. Again, maybe the Tylenol could alleviate some of the discomfort and she could sleep. He agreed and said he would have Mary call us in the morning and discuss coming in for a MR and we left it at that. Brooke took the Tylenol and did settle down and eventually fell asleep, but only if she were sitting up or laying on my chest if I were sitting up. The breathing relaxed a little everyone got a few hours in.

She seemed better in the morning but still not 100%. I thought 2 days of no sleep was a huge contributing factor and thought she would feel better as the day went on. Talking with Mary this morning, we both felt the Tylenol did the trick even though she was still not 100% of were she was in the previous days leading into Saturday. We were to continue our normal daily routine, have her home school teacher over, send her to PT and OT at Roberts School, and send her to her chiropractor appointment in the afternoon. If Brooke complained of headaches or started vomiting, we would rush her in to MSKCC.

I explained to her PT and OT what had happened the two previous nights and asked them to keep an eye out and expect her to be more tired than usual. I get a call about 15 minutes before I was to pick her up requesting if the school nurse could take a look at her because her breathing seemed rapid. I asked them to check the heart rate, blood pressure, and respiratory rate. Heart rate was good, blood pressure was good, and as we knew the respiratory rate was high. The nurse was concerned at how high and wanted us to just check in with our doctors again. Stef called and told them her count was about 50 and they said bring her right in. I listed the Toyota for sale on craigslist and was in the driveway selling the car as Stef informs me we have to go to MSKCC. I am on my to DMV to take my plates off the car I just sold so the person purchasing the car could get there and obtain their own plates. THERE IS ALWAYS SOMETHING. Michele ended up going with Stef and I finished selling the car.

They want to do blood work, urine analysys, and MR scan. Brooke does the MR again with no anesthesia but still needed to get her port accessed for the blood work. MR scan comes back clean and Brooke still needs to pee so Stef can get out of there. They think the tumor either shifted or somehow is putting additional pressure on the area of the pons that controls her breathing. We were supposed to be off the steroid 3 weeks ago, but they didn’t want to decrease the dose while we were at Disney or flying and when we got back we had the other small hiccup when she vomited. Last week we decided today was the day to continue the ween because they don’t like doing it over the weekend. So instead of dropping the dose to .5mg in the AM and .25 in the PM they suggest we do a temporary 1mg am and 1mg pm until we see what’s going on. I am still convinced that being on the steroid this long is the real issue but reluctantly agree. About an hour later, Stef calls me on her way home and informs me MSKCC just called and found an extremely low CO2 count in her blood work. They don’t know why and claim not to have seen this before. This is just fantastic. Now they up her dose to 1 1/2 mg for tonight and want us back tomorrow at 8:00am to recheck the blood work.

I have no idea where this going.

I hope to post good news tomorrow.

Steve

Don’t forget about Brooke at 10:00am
Written April 27, 2013 9:52am
Barbie had a false alarm the other day. She is still pregnant and waiting. Brooke had her first sauna last night. We started slow with a 10 min session at 100 degrees. She was reluctant at first but settled in pretty quick. Having the TV in there was the difference.

Not much came out of yesterday’s meeting. A few leads to follow up on, but nothing that I think will pan out at this time. Now it looks like we are waiting for the two Stanford trials to surface if I can’t find anything else in the meantime.

It is almost 10:00am on Saturday. Keep Brooke in your thoughts and prayers.

Steve

Starting over
Written April 25, 2013 9:42am
Two things before I start. Barbie is at the hospital possibly giving birth right now. I think Steve or Stevette works well. It is my mother’s birthday today.

Stanford referred me to St. Judes and St. Judes turned up empty. They have two trials, neither of which Brooke is eligible for. One is in conjunction with RT and the other is for re-occurrence. I don’t like the make up of the trials anyway. The chemo they use does not penetrate the Blood Brain Barrier very well. Only 5% of the drug reaches the tumor and the rest is absorbed into the body as toxins.

I have a meeting with MSKCC tomorrow afternoon and have a few calls out I am waiting for response on. There is really nothing left in the US that I feel is worth trying with any progress. I am interested in what Stanford comes up with later this year and God willing get to the CD-47 trial in late 2014. Based on everything I have learned, the Immunotherapy is the best coarse of action. You need to boost your own immune system to fight this off on your own. Taking any Chemo or other toxins depletes your immune system and makes it that more difficult to fight. There are two other trials in the US that work on the immune system. Pittsburgh, which you remember, Brooke did not qualify for because she did not have the HLA-A2 protein in her blood and Stanford which supposedly has a 55-60% receptive rate. That doesn’t mean it works, just that about 50% of the patients are receptive to the treatment. I have also talked to someone close to that trial that informed me their EGFR antibody doesn’t work alone and needs to in conjunction with other drugs and they do not know which ones yet.

I do remember hearing about an immunotherapy trial in Germany. I tried to look it up last night but couldn’t find it. I think I know who sent it to me so I will reach out to them today as well. I did find an immunotherapy trial in Germany that originated in 2009 for some other form of cancer, but not one for brain tumors.

Brooke is doing fairly well. She is much happier than she has been. She is much more talkative and less irritible. The swelling in her face has decreased a little and she is very slowly regaining strength on her left side. Brooke has a full schedule of PT, OT, and speech therapy at Roberts school in NP. She seems to like going there. We tell her she is going to school (not therapy) and she smiles every time. She has three therapists there and all are doing a great job and she likes them all. She has PT and OT at the Children’s specialized hospital in Springfield. She is still warming up to going there but it seems to be getting better each time. Brooke also has chiropractor appointments in Hawthorne three times a week and Reiki once a week in Chatham. Right now Brooke is at Preschool at New Providence Presbyterian Church. She loves going there too. Coordinating all these appointments/therapies is a project, but Stef is all over it. Stef also has done a great job getting the diet in order.

Brooke’s sauna is getting delivered tomorrow, a little later than the April 1st date they quoted us. The room is ready and I hope she takes a liking to it. We have been talking it up to try and build some anticipation and excitment. I also ordered Graviola fruit from California and am waiting for that to arrive as well. She still sleeps on her Biomat every night and Stef started putting a warm teddy bear (made for this purpose) on the back of her neck at the brain stem while she watches TV. In addition to that she takes a few homeopathic remedies each day and has a foot spa for detoxing. I think I got everything…but I am actually not sure without looking at her schedule.

In other news, Bikers for Brooke is less than 2 months away. You can read about it and link it in the fundraising page near the bottom or click on the webpage link in the first sentence. Don’t be alarmed by the website picture. This is not a bunch of crazy Bikers straight out Every Which way But Loose starring Clint Easwood. The Black Widows will not be present. This is going to be a great family picnic/BBQ. There are all sorts of kid friendly activities. YOU DO NOT NEED TO RIDE IN THE MOTORCYCLE RUN TO ENJOY THE FUN!

The event is on June 22 rain or shine,
Registration 10-11:30, OLP Parking Lot, South Street, New Providence, blessing of the bikes will take place at roughly 11:45AM, Kickstands up at NOON,
A 40+ mile police escorted ride from New Providence through various scenic areas. Will end at Mt. Carmel Hall, Springfield Avenue, Berkeley Heights.

After Party and BBQ 2PM -7PM
There will be plenty of things to entertain the kids while the parents listen to live music ( 3 bands) and win one or more of the great raffle items! There will be face painting, balloon animals, A Video Game Truck and an interactive Science experiment! There will be free ice cream from Zita’s as well as the BBQ. Cash Bar.
COST: $35 per person
$10 kids under 11
Tee Shirts
Be sure to purchase your Bikers for Broke T-shirt and wear them during the ride or wear at the After Party.
$15.00 a piece (Available in S, M, L, XL, XXL)
Kids shirts coming soon!!
Shirts can be purchased at:
Timony Realtors 1259 Springfield Ave, NP
Poalo’s Kitchen 162 South street, NP
Please make checks payable to Heartworks and put Bikers for Brooke in the memo section

You can also pre order T-shirts by emailing bikers4brookeorder@gmail.com $5.95 shipping (Total= $20.95)

Thanks,

Steve

Minnesota is a dead deal
Written April 22, 2013 11:42am
I should have never got that email Sunday morning. Why the doctor wrote it is beyond me. I did however get “I am sorry for the anxiety I have caused” in an an email this morning. Well, that certainly fixes everything. In another email late last night it was explained to me that even if they were able to get an extension, Brooke still would fall out of the range of meeting the timeline due to how long it would take to accomplish the approval.

I am waiting on a few calls today. Two from MSKCC from doctors that are going to arrange meetings with me to discuss options and one from a doctor from Stanford to do the same via phone. I don’t anticipate much from MSKCC but I am hopefull the doctor from Stanford can shed some light. She has had some success treating mice with a DIPG with a drug called CD47, but is far from Human Clinical trials. The CD47 has worked on several other types of cancers as well. Those trials will not be open until late 2014. Getting to that point may be the next obstacle.

I also need to reach out to St. Jude’s sometime today. They have discovered a different molecular structure in DIPG’s not yet detected by others. The trick is do they know what to do with it? I need to reach out and see if they have made any progress.

Brooke has felt much better the last two days. She is talking much more than she has and said she has more feeling in her left hand. The RT is working and as the swelling subsides she should gain more of her motor skills, both fine and motor. She continues with her PT at Roberts School today. She really enjoyed her first session there.

The search continues,

Steve

One more swing of the bat
Written April 21, 2013 11:32pm
Just got another email from the Doctor running the Minnesota trial. FDA has approved the trial to begin Tuesday. This is one day too late for Brooke. 5 weeks to the day is tomorrow, Monday. They are trying to get a one week extension to the trial criteria but are not sure how long that would take. Hopefully more news tomorrow.

Steve

FDA drags their feet
Written April 19, 2013 10:42pm
Just got an email from the Doctor running the Minnesota trial. FDA never reviewed toxicity results from adult patients. According to the qualifying criteria of the trial, patients must be enrolled within 4 weeks +/- 1 week of completing RT. Monday is 5 weeks to the day for Brooke. WE ARE OUT.

There is no plan B.

Steve

Brooke’s Disney trip and continued bumps in the road
Written April 18, 2013 11:02pm
Today is Stef’s birthday and we spent it in NYC at MSKCC. I will elaborate after the Disney news.

We were picked up in a stretch limo and brought to the airport. The kids behaved fairly well on the flight there and watched movies. We got lucky because there was an empty seat between me and Ashton, so in a row of 6 (3 on each side of the isle) we had 5 seats plus an extra. Bryn pretty much bounced from Me to Stef to either of the two empty seats (hers and the freeby). That was a help considering there were only about 4-5 empty seats on the whole flight.

We were greeted by a “Give Kids The World” volunteer at the gate. He helped us claim our baggage and had a luggage cart and transported us to the rental car center. “Make A Wish” provided the rental car. He gave us directions to the “Give Kids The World Village” and we were off. About a 15 minute ride later we were there. We were given a 2 bedroom, 2 bath Villa with a Living room, and eat in Kitchen. It also had a dishwasher and washer and dryer. It was pretty nice. The village had a cafeteria style dining hall and a Boston Market for us to eat at free of charge of coarse. They also had an ice cream parlor open from 7:30am to 9:00pm everyday, not to mention horseback riding, fishing, 2 pools, game room, video room, mini golf and many more kid friendly features all free. They had nightly activities in the main courtyard and characters to meet both morning and night. Between “Give Kids The World” and “Make A Wish” we were well taken care of. “Make A Wish” also provided 3 Disney park hopper passes for 5 and one Seaworld pass for 5 as well as all of our pics from our photo pass free of charge. There was so much to do at the village we could could have bypasses some of the park passes.

Anyway, the first couple of days were very emotional for me. I hated being there for the reason I was there and couldn’t get past it. Brooke had a good time, but there were times where it was tough to tell whether or not she actually was. That was the toughest part for me. All I wanted was for her to enjoy herself and when I couldn’t tell it was heartbreaking. If I had to rate on a scale of 1-10, Ashton’s good time was a 12, Bryn a 10, and Brooke maybe a 7. I don’t mean for that to be negative. She had fun, it’s just that there were times where she was irritable and she knew she had limitations. There was one time she wanted to swim by herself, like Ashton and Bryn (with arm floaties) but knew she couldn’t and got visibly upset. She definitely enjoyed meeting the characters. We didn’t wait on a single line the entire trip. We would show our “Make A Wish” button and go straight to the front of every line.

We had a party of 12 for two days. My mother and brother met us at Magic Kingdom and Seaworld, as did Stef’s parents and Michele, Joe, and Rose. They all came by our Villa to visit at least once while we were there. Brooke loved to see everybody. Brooke’s favorite memory of the trip was eating ice cream each day. She made it a point to get something different each day. One other funny story was when we were walking past all the carnival type games. Ashton wanted to play the game where you shoot the water gun to pop the balloon. Stef played against him and “he won” a stuffed penguin. We asked Brooke what she wanted to try and win. She looked around frantically with an enormous smile on her face. Stef and I tried to persuade her toward some random stuffed gifts, but she wasn’t biting. Her eyes caught a glimpse of this giant stuffed pink raccoon. It was much bigger than her. As soon as I saw it, I knew there was no way to get this thing home, so we tried to convince her of some smaller stuffed items. Not happening. As luck would have it, in order to win all you have to do is make 2 out of 3 foul shots with a regulation basketball in an extremely undersized hoop. For those of you not seeing the irony here, I coach wrestling for a reason. I have no business with a round ball in my hand. Well I knew I was screwed so I tried to cut through the chase of spending who knows how many dollars on attempting to win this thing and said to the girl working the game; “My daughter is with Make a Wish, and there is no way I can win this thing. How much to buy it outright?” After some haggling, I got it for $25 bucks. Quite a bargain I must say, I would have dumped a $100 easy before I could have come close to winning that thing. I took three shots and missed them all. Even completely missed the backboard one time. Took the raccoon and handed it to Brooke. She was thrilled, but i still didn’t know how I was getting this thing home. Well, It’s here. I wish I had a picture of me pushing Stef holding Brooke in the wheelchair, while I was holding Bryn and balancing the raccoon, two big duffel bags and two carry on bags, while at the same time yelling at Ashton to keep up as we moved to the luggage carousel to get more luggage.

On the flight home, we again had an empty seat between me and Ashton. Again there were only 4-5 empty seats on the flight. I don’t know if there are not many people filling single seats or someone was taking care of us, but it was a big help either way. Bryn was a terror on the flight home. She missed her nap and was what you would think an overtired 2 year old would be like on a 2 1/2 hour flight. NONSTOP, and I am not just talking about the flight. Anyway getting home was a good end to a good trip.

That brings us to this morning. Brooke threw up while eating breakfast. This is only her third time since we started this whole process 13 weeks ago but requires a phone call to the pediatric day hospital. They want us in for a check up. Stef and I have been having some concerns lately because Brooke really isn’t improving too quickly and we were told most kids are back to there normal selves by the end of RT or shortly after. Brooke also had a few episodes at Disney. So we load up the car and head in. I have never been so frustrated at the amount of traffic I encountered today. It took us 2 hours to get in. There was stop and go traffic on 78. There was dead stop traffic getting on the turnpike to get to the Holland tunnel so we decided to go GWB. 2-3 miles up the ramp, stop and go again. We get off the bridge onto the FDR and hit more stop and go. I try to get off and take York ave the rest of the way up but get on a bridge to who knows where despite Stef’s warnings to do so. Needless to say the rest of the ride was continual arguing. Now Brooke is screaming she has to pee. Stef runs her into a McDonald’s and them we continue up 3rd ave in more stop and go. UGH!!

Ok, so when we get to MSKCC we meet a new doctor we have never seen. She explains she met with Mary and Dr. Dunkel and they want another MR scan. They feel a CT will not be clear enough. The problem is there is no anesthesiologists available. I ask Brooke if she wants to get her port accessed and get her sleepy medicine to do a picture or if she can lay still and do it without it. She wants to try without medicine. She was a champ. She was clearly scared but listened to every word I said and didn’t cry once. I was able to hold her hand the whole time and she squeezed it tight until we were done. After it was over I told her I know it was scary because she has never done that before but it ended up being pretty easy and maybe we could try again another time and she agreed.

Mary and the two doctors read the scan and all agreed that Brooke still does NOT need a shunt. In fact all agreed that the pseudo-progression area is slighty larger than last weeks scan, but that is more revealing that it is post RT swelling and not progression. All agreed that they feel the area is swelling because cells are in the process of dying and have not yet been absorbed. The doctor explained the RT works from inside out in concentric circles and the outer circles are starting to die off now. I say that is great, the RT is still working and she has not shown signs of improvement because of the RT swelling. The doctor nodded in agreement and added that the area that is swelled is definitely putting pressure on an area that is causing her left side weakness. She also said that when that area is relieved of pressure Brooke should resume some normal function on her left side.

We head home at 3:00, or rather Hawthorne to Brooke’s 4:00 appointment with her Chiropractor. We take the Lincoln tunnel to get to the parkway only to get wacked in more traffic. In the city, the tunnel, route 3, the parkway, route 208, what a mess.

If we do not get word from Minnesota via the FDA in the next few days, we may be locked out. This would be quite a setback but I will post about that by Monday.

Sorry no pics at this time. Sorry no posts from Disney. I meant to do so a bunch of times but didn’t have the energy toward the end of the night.

Steve

Brookie’s busy day with MR scan results
Written April 8, 2013 6:42pm
Me Stef and Brooke headed off to NYC today for post RT MR scan at 6:30am and just got home now. We hit some traffic on the way in and were a little late. While we were waiting for Brooke to get her port accessed a child in front of us was getting an IV line put in and after more than 45 minutes of this poor kid screaming and multiple attempts they had to send her downstairs and have anesthesia do it for them. We were told we were behind them for the MR scan as well and got pushed back an hour for the day. On the bright side, Brooke was accessed in about 20-30 seconds and we were off to see Mary for anesthesia clearance. We cruised through that process as well.

Brooke was playing a computer game with Stef in the MR waiting/prep room and I caught a few ZZzz’s. Only one of us were allowed to go into the MR room with Brooke and Stef picked me. She has been a nervous wreck these past few days and wanted me to go. I got my scrubs on and carried her in. Me and Brooke are in the picture above just before going into MR scan. Brooke is showing you her tubbies. Brooke pulled her tubbies out for her sleepy medicine and smiled as they administered the anesthesia. She went right out and I went with Stef to the recovery area on the 9th floor. Brooke went through the process without a glitch. She did not have an increased blood pressure or reduced heart rate like she did a few times with RT. Everyone was pleased. After she started to come around and eat, we had to get a 1 hour IV form of bactrum. That is supposed to help with complications from the steroid ween. Since we did the IV form today, Brooke doesn’t need another for 1 month. We were doing oral treatments which were once a week for three straight days. So now we don’t have to worry about that for another month.

As Brooke is getting the IV, we are told Mary and Dr. Dunkel are ready with our MR results. Brooke’s IV machine starts beeping like crazy and it is a different sound than the battery getting low. As we are eager to get across the floor of the hospital to hear the results, the nurse is fumbling around with the machine. She says, “I got it, if it happens again come back.” We go across the floor and as I put my hand on the door to the consult and examine offices, it starts beeping again. We turn around and another floor nurse looks at the machine and tells me the pump is defective. “Make sure you tell your nurse to change the pump.” We go back to the procedure room. I tell the nurse what the other nurse says and she says “No, I got it now.” We all know where this is going. So now Stef, Me, and Brooke are staring at the nurse starring at the pump. I finally say, “Look we are getting our MR results now, let’s get this moving.” She said to go ahead, if it happens again, I will come over to you. This time we get inside the consult/examination room and it starts beeping again. Mary calls over to the nurse and she brings a new pump. Yeah we had to wait to hear the results, so you did too.

OK. So Dr. Dunkel starts off with, “I don’t have bad news.” He explains that the MR scan results could be great, somewhere in the middle, or discouraging. He said it would be great if the tumor shrunk to half its size or something like that. He said ours is in the middle. He continues with the area we were concerned about a few weeks back that was putting pressure on the fluid passage is no longer an issue. The verticals are normal size and there is no sign of hydrocephalus. Meaning there is no swelling in that area and she does not need a shunt anytime soon. However there is another area that is slightly increased and could be one of two things. Progression (growth) or pseudo-progression. Pseudo-progression would be swelling/irritation/cell death not yet absorbed by the body or something that looks like progression, but will eventually become stable or shrink. As I said in an earlier post, we kind of expected that in this initial 4 week scan. It seems fairly common this early after RT. We have talked with other parents that have had 4 weeks scans that showed an overall enlargement only to have uniform shrinkage in the following scans. Dr. Dunkel said it is not likely that the tumor would shrink in one area but progress in another, but that it is a possibility that it could. He also said he believes that it is in fact pseudo-progression but cannot put that stamp on the diagnosis because of the possibility of it being growth. In his words, “The odds are in our favor that it is pseudo-progression.” Stef and I are pleased with today’s results and both expect the questionable area to in fact become stable or shrink in the coming weeks.

The only negative of this news would be if we were rejected from Minnesota because their interpretation of this scan was in fact progression. That would make Brooke not eligible by the parameters outlined in the trial criteria. They also may request another scan in the coming weeks to more clearly diagnose the results of RT. I will be on the phone with them tomorrow.

It took a little while for us to digest the news and break it down for ourselves. While were were digesting the news, Brooke was digesting her chicken fingers and fries. We left the hospital and headed to Hawthorne to see Brooke’s chiropractor. We need to see him today and tomorrow because we will not see him for the next 10 days (Disney). Brooke successfully went through her 2nd consecutive session with with not a single tear.

Now we were off to Friday’s of course. We had dinner, stopped at Dunkin Dounuts for a few munchkins and headed home. This is the first time we completely ignored Brooke’s diet. Disney will be similar.

In other news. The BIKERS FOR BROOKE fund raiser is coming along nicely. Click on the link http://www.bikersforbrooke.com/ to see all the details. Stef and I attended an organizational meeting on Sunday. There is an expectation of 400+ people in attendance on June 22, 2013. This is going to be a family BBQ picnic style event at Mt. Carmel hall in Berkely Heights following the bike run. All family’s are invited to attend the after party at Mt. Carmel and there will be plenty of kid friendly features. Face painting, Magic Show, ballon animals, etc… There is also some amazing raffle items. There is a 5 piece drum set, IPAD, Guitar, weekend in NYC, and Weber Grill just to name a few. It should be a fun time for kids and adults. I hope you all can make it!

Steve

Brookie’s busy day with MR scan results
Written April 5, 2013 4:02pm
I have been meaning to post for days now, but continually get side tracked. I can’t keep up with things I need to follow through on each day. Stef wants to make every Saturday at 10:00 am a designated time to pray for Brooke. She said she can feel the energy in her heart. Please make a permanent reminder in your cell phone to give support in numbers each week. Again, I know many of you think about Brooke often and pray for her at other times, but please use this designated time in addition to what you already do.

Brooke has her 4 week MR scan on Monday. Be sure to include that in your prayers. We were told we may not see any shrinkage at this time because there may be RT swelling and cells that are in the process of death, but not yet died or been absorbed by the body yet. Hopefully we do see some shrinkage and certainly no growth.

Brooke walked unassisted yesterday for the first time about 6 weeks. She walked from her room to Mine and Stef’s. Each day she walks (assisted) more than the previous. It is going to take some time to overcome the weakness from lack of use and steroid side effect. Her swelling has decreased a tiny bit and the ween is going as scheduled. She will be off them completely in 9 days!!! Her personality is slowly returning as well and has less steroid irritability each day.

We no longer have PT and OT because we don’t travel to NYC anymore but have finalized getting treatment through the New Providence School District and Children’s Specialized Hospital in Mountainside. Each should begin soon.

We leave for Disney on Thursday and the Make a Wish team should be here any minute.

The Minnesota vaccine trial looks real promising and we are waiting for FDA approval since Brooke would be the first child in the trial. The approval SHOULD be a formality because there is no toxicity. Once we receive approval, which should be in the next 10-25 days, we are off to Minnesota for a month. It is possible we could be leaving within days of returning to Disney. We will then have to travel back to Minnesota once a month for about 3 days at a clip.

I will post something else soon. I gotta run. Make a Wish should be here now.

Steve

HAPPY EASTER!
Written March 31, 2013 8:42am
Brooke picked out her Easter dress because she said the circles look like Easter eggs.

Saturday prayer session and Taylor Swift
Written March 28, 2013 7:36pm
Jeanne Ross (if you did not see her post on the guestbook) of NPPC has volunteered the New Providence Presbyterian Church to any of those wishing to join in for a prayer session at 10:00am on Saturday 3/30/13. She said to “meet at the double door entrance off the parking lot then go inside. On this Easter weekend, we will pray to Jesus to intervene in the life of precious Brooke. We would love to see you there. Jeanne Ross, 908.665.0951″

Thanks Jeanne!

Brian and Dorris Donnelly offered this prayer they say often for their daughter, Juliana, who is also diagnosed with DIPG.
Heavenly Father,
I call on you right now in a special way. It is through Your power that we were created. Every breath we take, every morning we wake, and every moment of every hour, we live under Your power. Father, I ask you now to touch Brooke with that same power:
For if You created her from nothing,
You can certainly recreate her.
Fill her with the healing power of Your Spirit. Cast out anything that should not be in her. Mend what is broken. Root out any unproductive cells. Open any blocked arteries or veins and rebuild any damaged areas. Remove all inflammation and cleanse any infection. Let the warmth of Your healing love Pass through her body to make new any unhealthy areas so that her body will function the way You created her to function. And Father, restore Brooke to full health In mind, body, and spirit, so she may serve You the rest of her life. I ask this through Christ our Lord. Amen.

Thanks Donnelly family. I think Brian posted this on Brooke’s CaringBridge site a few weeks back.

The Taylor Swift concert was fun! We are thankful to Kelly Klaif for our tickets. What great seats. We were literally 20 yards from center stage off to the left. I called Joe Stivalo (my brother-in-law) as we were driving in and asked where I should park. He called me back in about 30 seconds and gave me one of his contacts working in the area. As we pulled up, road blocks were lifted and we were directed where to park. I swear, we had better parking then Taylor Swift herself. We parked on the street about 30 feet from the main entrance. Only Stef and Brooke were allowed to meet Taylor Swift as seen in the photo above. I am convinced that once they saw my rugged good looks, they were worried Taylor might not be able to perform if she set eyes on me so they only let Stef and Brooke go behind stage. I guess all is well because she put on a good show. Taylor did say: Hi Brooke!” as Stef approached her. That was kinda cool that she recognized her from a photo I guess. Stef was pretty impressed when Taylor’s assistant, Erika, called her on the phone and was relaying a message from Taylor who seemed to be next to Erika at the time.

Please remember to set your phone timers for Saturday morning at 10:00am for your thoughts and prayers for Brooke.

Thanks,

Steve

A whole bunch of info
Written March 26, 2013 10:26pm
I had mentioned in an earlier post that we wanted to coordinate a mass prayer session. Stef has picked this Saturday 3/30/13 at 10:00am. Set your phone timers so we all can put our thoughts, prayers, of whatever positive vibe you can send in motion at this time.Whatever you choose to do, please include Brooke’s name in your process. PLEASE HELP SPREAD THE WORD! Send out email, text friends and family, post on facebook, notify your prayer groups, reach out to your church groups, and whatever else you can come up with. We have been in contact with one of our survivor families and they said they did this often. I know many of you include Brooke in prayers daily, but please add in one more at this designated time.

Check out the video Jill Driscoll put together with all the pics from the 3/16 fund raiser on the Photo Album page. Speaking of fund raisers, the BIKERS FOR BROOKE fund raiser is really coming together thanks to Donny Curcio and crew. If you missed out on some of the raffles or silent auction items at the 3/16 fund raiser, you will be equally impressed with some of the items at the 6/22 function. For more details look at the fund raiser page.

Brooke, Ashton, Stef and I are off to the Taylor Swift concert tomorrow night at the Prudential center. Brooke said today that she was excited to go. I am a little worried she will get tired fast. It starts at 7:00 and she is usually in bed by 7:30-8:00. Miiss Kelly and Miss Cindy from the Connection in Summit dropped off the tickets today.

Brooke went to her preschool today for about 45 minutes. She had fun and wants to go back. We are going to try and increase the time she spends there each time she goes. She needs to get back into a normal routine. I still see small improvements each day. They may be baby steps, but they are in the right direction.

Steroid ween is going smoothly so far. We have an appointment at MSKCC on Thursday for a check up/ check in.

Some members of New Providence High school made Ashton, Brooke, and Bryn some Easter baskets and are bringing them over Friday morning at 10:00am. One of the kids will be dressed as the Easter Bunny.

Saturday Brooke, siblings, and cousins will be at the King’s cooking studio in Short Hills. Normally they would be baking pizzas and cupcakes, but we requested pizza and berries with natural cream instead. This works better for Brooke’s diet.

We are encouraged Brooke keeps moving in a positive direction. We also believe that we need to help her body trigger something that will allow her to fight this thing off on her own. Modern medicine doesn’t have an answer at this time, but most of the survivors we talked to believe in the same philosophy of Brooke’s body healing itself.

Steve

No news is good news
Written March 23, 2013 4:25pm
I have not written anything since Monday and that is a good thing. Brooke is fairly comfortable in her daily routines. She does have some steroid irritability from time to time, but nothing that is not manageable. She is continuing her schedule of weening off the steroid. We will decrease the dosage again tomorrow. The first two decreases went without a glitch. If there are issues, she would most likely vomit and have increased physical symptoms. As of now, her physical symptoms are getting slightly better each day, but there is a long way to go. I will take improvement over anything else every time, no matter how slight it may be.

While we are still researching if the Minnesota vaccine trial is in fact the best coarse of action at this time we are starting a few alternative treatments. Thanks to you fund raising dollars, we have purchased a biomat for around $1800. The biomat is on Brooke’s bed and she sleeps on it every night. It produces heat and infrared waves that are intended to deeply penetrate and and help break up the mutated cells. We have also purchased an infrared sauna for just under $4000. Sean Castle and I are in the process of building a sauna room in my garage. The sauna should be delivered in about 1-2 weeks. The purpose is basically the same as the biomat. Brooke also started seeing a chiropractor that specializes in children and also brain tumors. He is located in Hawthorne NJ. It takes about 35 minutes to get her there. Glenn helped me to make this decision with one of our conference calls. I think there is some potential here. He is relieving pressure on the atlas and axis in the hope to create a better path (or at least less resistance) for the T-cells to get to the brain stem. One of the survivors we have contacted uses the same chiropractor. Brooke also had her first Reiki session. She enjoyed it. If you don’t know what Reiki is, it is basically energy healing. I know it sounds wierd, but it certainly can’t hurt and Brooke seemed to be comfortable and relaxed.

Again, not much to give you at this time, but I think that is a good thing. We do have a follow up at MSKCC on Thursday of next week.

Keep Brooke in your thoughts and prayers!

Steve

Monday … exciting news every way you turn
Written March 18, 2013 3:05pm
Saturday night was simply awesome. What a turn out and what a success!!! Stef and I are so appreciative for the efforts of all in attendance and the girls for putting on such a display. We had a goal of $200,000 by the end of the night 3/16/13 and surpassed that by about $20,000-30,0000. There are still some funds trickling in from earlier fund raisers. If the diffuser fund raiser reaches full potential that will bring another $30,000-$40,000. Laura now has a new goal of $300,000. We really can’t thank you all enough. How cool was it to have Abigail and Spencer Breslin come and perform?

More important than any dollar amount is the fact that Brooke has had a real good last few days. Saturday before the fund raiser, Me, Stef, Brooke and Bryn went to Uncle Robert’s. Ashton was with Grandma. Tatiana, Robert, Stef and I worked on getting the diet nailed down. Bobby, Anna, Brooke, and Bryn went off to play on their own. This of coarse was before the Marc Anthony Salon in Madison treated the five of us plus Michele and Betty Anne to haircuts and nail stuff for the girls. Bryn was so excited to get her nails done. By the way, today is Bryn’s birthday. She is 2 years old today.

Brooke woke up early this morning ( that means before the alarm went off at 5:30am). She had to go potty, but laid in bed with me and Stef and asked if she can go back to Uncle Roberts to play with the kids again becuase it was so much fun. We are going either Saturday or Sunday. She also said that she wasn’t going to cry today went she gets her port accessed. Stef and I always call them “tubies”. What 4 year old kid says “port accessed”? The whole car ride there she talked to us. Usually she sleeps. She was so excited to be done with RT. Last night she asked “What special event can we do to celebrate no more hospital?” We said what ever you want, you pick. She chose to go to Zita’s for ice cream. We gave her sugar free frozen yogurt, but she was none the wiser and thrilled to be there. She also said she wants to play her Wii dance game because she thinks it will help her to walk better. I really can’t figure out where she gets this from.

Mary, her nurse was so excited at Brooke today. Brooke plays possum every time Mary examines her. She literally pretends she is sleeping and grunts and moans when she touches her. Brooke said one word to Mary in 9 weeks, and that was “NO!” Today the two of them were talking up a storm. Once Mary confirmed we were not going back tomorrow Brooke opened right up. Laughing, answering Mary’s questions, adding her own conversation, it was awesome to see her like that. After we went to Zita’s, we went to Toys R us to get Bryn something for her birthday. Brooke and Ashton each picked something out for her. Brooke also go a new booster seat for the car. Since she is a big girl now all finished with RT, she needs a big girl seat that is not so tight. Again, she was thrilled about this. She picked the red one.

Brooke starts her ween of steroids today and we have a reduction schedule every three days of 1/2 a mg. If we can stick to the schedule without any complications, she will be off within the month. The doctors expect her to bounce back almost fully by that point as well.

It’s a good day. I am anticipating more to follow.

Steve

Thursday 2 RT sessions left
Written March 14, 2013 9:15pm
OK, so when I left off I swore Brooke would be on a ween of the steroid. The next day, Tuesday, her heart rate dropped immediately following RT again. To make a long story short, the doctor wanted to leave the dose at 5mg per day. She added that normally she may have wanted to increase it once again, but under the circumstances just leave it where it was and muscle through the last 4 RT sessions. After some debate, we agreed. I actually got her to agree to a small ween of 4.5 mg per day, but felt it was so insignificant, that we didn’t bother.

Wednesday was a pretty good day. Today Brooke’s heart rate dropped down into the 40’s once again. Ironically just before RT, the nurse stated that she was the acting nurse both times Brooke had the issue of the low heart rate before. It is a different nurse each day. I think there are 4-5 that we usually see. I told her she wasn’t allowed to stay int the room (jokingly). At this point, it is not so alarming. They didn’t rush her upstairs to be evaluated, but told us we can go home. Funny how the 1st time we are told Brooke needs a shunt and an CT is ordered, the 2nd we stay a couple of hours to be evaluated, and the 3rd we get a shoulder shrug and sent home.

Brooke is extremely uncomfortable tonight. She is as irritated as she was on Saturday. She lays there and moans, but doesn’t say anything hurts or bothers her. She repeatedly calls out for mommy is Stef is not in the room. If I try to lay next to her, sometimes its ok and others she grunts and screams. If I touch her, or rub her she starts flailing her arms and hits my hands away. It’s awful to see her her like this. Tonight’s episode only lasted a couple hours as compared to about 10-12 on Saturday. She is sleeping right now and calm.

They keep saying they expect her to return to her normal self soon. They say the RT will continue to work in the coming weeks even though she is no longer getting sessions. Once the swelling subsides, we should get our little girl back. Then the fight starts to keep her that way!

I have been able to contact the parents of 5 DIPG survivors. 4 of the 5 are 8+ years from diagnosis and the other is 2 years out. I have been trying to find a common link as to why these kids have or are beating the odds. Medically, there are only a couple commonalities. Every one, except one did no other treatment other than RT and some supplements/homeopathy. The exception was in a government trial involving chemotherapy and was the only survivor. None of them shared any common supplements or alternate treatments.

After talking with diffent doctors from different institutions every day for the past 9 weeks, I am confident that our choice not to jump into a government trial during RT was in Brooke’s best interest. We may be heading to Minnesota in about 4 weeks for a vaccine trial. What we like about this trial is that there is very low toxicity (if any) associated with the treatment. The vaccine actually boosts the immune system so the body can detect the foreign cells and attack them. There is also a topical cream that will aid in boosting the immune system overall as well. Once we narrow down what alternative treatments are best for Brooke, we can stay on them during the vaccine trial. This is rare because because most trials want to report that there are no outside influences on the results they expect. Because there is no toxicity in the vaccine trial and there will no toxicity in the treatments we select, it will not compromise the trial. I spoke with the PI (primary investigator/doctor) conducting the trial again today to confirm some questions I had. He claims that RT and his vaccine are the only proven treatments in DIPG to date. He conducted this same trial for DIPG and adult patients with other brain tumors before at re-occurrence. Because he did not have many DIPG patients he could not publish results showing the effectiveness of his vaccine, but claims that he showed survival of an average of 3 months beyond any other clinical trial involving DIPG to date. He also is very optimistic that starting the vaccine immediately following RT, and not waiting for re-occurrence will provide greater results. The fact is that he treated 3 adult patients on this new trial and pending FDA approval in 2-3 weeks, Brooke will be the first child in the trial.

OK, so one thing I learned from my survivor contacts is this. There are three components to beating this thing.
1) Modern Western medicine as long as it is proven and not toxic to the children (This is most difficult with DIPG because of the location and type of tumor).
2) Eastern medicine or non traditional methods involving supplements, homeopathic remedies, and diet.
3) Faith (most of you who know me well, know this is not something expected from me, but that is about to change)

The faith component was the only thing common in all 5. Not only common, but a major point of emphasis. In each of the conversations there was a great deal of time devoted on prayer and belief. In one case it started with the grandmother, but changed the whole family as the child was beating the odds. Every other case had a strong foundation trickling in from the parents. Every one of them had multiple prayer groups and mass prayer sessions coordinated so everyone could pray at the same time. We will announcing some designated times in future posts. One family started a chain letter and claims it reached all over the world. They received an email correspondence from India who claimed to be a Buddhist, but wanted to show support of their loved one.

I know we have a lot of prayers out there already, but we need continued support. Let’s kick it up into high gear!

Steve

P.S. I will definitely be posting tomorrow night regarding Stef and I attending the function Saturday. If you are attending the fundraiser, please take time to read my post before heading off to the event.

Monday 5 RT sessions left
Written March 11, 2013 5:05pm
Physically Brooke is doing fairly well. She still does not do too much on her own and has not stabilized her balance, but is trying to do a little more each day. She will walk for short distances as long as you hold her hand. She has tried stairs a few times holding a hand, but usually wants to be picked up and carried. Emotionally she has regressed quite a bit. She will not look in a mirror or let you take her picture. She is so self conscious of how her face is swelled. We brought her outside after some coaxing as she was watching Ashton and Bryn from the window. Once we got her out there, she had fun on her favorite swing. She was smiling ear to ear, but when she knew I was about to snap a picture, she dropped her head and lost some of her smile. I have been convinced that the increased steroid dose she is on was starting to reek havoc again. She will go through periods of non stop whining for what seems to be no reason. Saturday was pure hell. She was irritable and cranky all day and didn’t stop crying and whining. Michele, Joe, and Rose were here and basically had to leave because it was so bad and everyone starting arguing from the stress and tension of seeing her like that. I didn’t even realize they had left. Sunday was a little better, but no cake walk. The best part of her day was at the Turtleback Zoo. She enjoyed the day and smiled and had fun. She still doesn’t run around with Ashton or Rose (or even Bryn for that matter), but watches them play. She was smiling the whole time!

Today she has showed signs of irritability agin while at MSKCC. Luckily our nurse, Mary, witnessed it and agreed it is steroid irritability. The bad part, BECAUSE THERE IS NEVER SMOOTH SAILING, is that our doctors are away until Wednesday at a Brain Tumor Symposium. The doctor on call, who has seen Brooke twice in seven weeks and wanted us to get a shunt last Thursday because her heart rate dropped during RT recovery, will not decrease her steroid dose. I didn’t even post that whole scenario last week. Brooke had another CT scan after I posted on Thursday and it again showed no signs of hydrocephalus. This of coarse after the doctor said we need to go the whole shunt route agian. I didn’t post because I was 100% sure it was an isolated incident. She had no other symptoms and the heart rate drop can be a side effect of anesthesia. Anyway this overly conservative doctor will not decrease the dose and our hands are tied until we see her again tomorrow. If it were up to me, I would start the ween myself but Stef isn’t comfortable doing this on our own right now. I am not about to start that battle between us with everything else we are dealing with. Mary laughed when I told her I wanted to start my own ween of the steroid. She said I would get a stern lecture tomorrow if I did. I just looked at her and she laughed again. She knew that was the least of my concern. DON’T WORRY BROOKE WILL BE ON A LOWER DOSE TOMORROW!

Brooke is starting to get ultra attached to Stef. Yesterday she wanted to go to Rose’s to play, but we found out from her today that she didn’t go because she thought Stef was going to leave. We have discussed getting them separated more often. It is good for the both of them to be a part from time to time.

I can’t figure out if I am happy or sad RT is ending Monday. I am glad to not be driving to NYC everyday and Brooke not having to be under under anesthesia, but scared to death that the waiting game begins. We still have few things to sort out about what exactly we are doing next. We are pretty much on our own to figure out what is best. The doctors really don’t weigh in, and in my opinion, I need to read into some of the conversations we have to “get a read” about what they think of some of our alternatives.

Once this steroid ween is underway, I know we will see major progress!

Steve

Thursday finishing up week 5
Written March 7, 2013 10:15am
Everyday Brooke is showing progress. We still have our moments. Tuesday she vomited after lunch. We think she had a stomach bug or maybe ate too much. Bryn has been sick and threw up twice as well. Other than Brooke feeling sick for a 1/2 hour or hour, she was fine. Today her heart rate dropped during RT. They woke her up after Rt was finished and have been monitoring her since, but again she is fine.

There is marked improvement every day. Today I asked her if she feels better everyday, and she said yes. She said that is why she practices walking by herself. She also said that she still needs a grown up to help her on the stairs, but soon she will be doing it by herself. Then she added, “I will be going potty by myself again soon too.”

All the doctors say that they see significant improvement. She is waking up from RT quickly (which is a good sign), her mood swings are less frequent, and physically improving by the day if not minute.

We are in NYC right now. We stayed at the Ronald McDonald house last night to avoid the snow this morning. GOOD CALL, HUH? Ashton is with us and the two of them are thrilled to death. They call it vacation sleepover. We are going to get some breakfast together and head home.

7 sessions of RT left!

Steve

Sunday heading into week 5 of 6
Written March 3, 2013 2:15pm
Not much to report, which is good. Since Wednesday we have been doing good overall. Brooke is happy but has started to swell up quite a bit with the increased steroid dose. She still has some irritability moments, but nothing alarming. She does breathe heavy from time to time, but that is supposedly a side effect of the steroid as well. It could be that her diaphragm is being pressured from swelling in her abdomen. We had a minor scare yesterday, when Brooke got freaked out and said the floor is falling out from under her and the room is spinning. She has never said anything like this before. Stef called MSKCC and they said not to worry and that it is a side effect of the steroid. Something we might have wanted to know.

I spent some time at the Region III wrestling tournament Friday night and Saturday. It was good to do something different. Stef is out on a “SPA DAY” with a group of girls today. I am glad Paula and the girls got her away. Ashton is playing with Rose, Brooke is spending the day with grandma, and Bryn and I are hanging out. Bryn is napping so I was able to get away and write this update.

We need to figure out the correct dose of steroid. We were clearly on too little dose last week or tried too ween too quickly, but I feel we may be on a little too much right now. We have a meeting tomorrow to discuss the dosage. The doctors confirmed my belief that we tried to ween too quickly. They also believe that was the “bad part” Brooke was going to experience before getting closer to her normal self.

It seems that everyone likes the new website. The only drawback I can see is that we cannot send out any alerts when we post updates or news. For now, I guess we will post on Caringbridge that we made an update here. Someone had mentioned we may be able to do an alert through facebook. I don’t even know what that means. I know someone has a Brooke facebook page, but I have never seen it. Stef is a facebook person, maybe she knows.

I think the emailing of the letter has helped. It seems some more donations have been coming in since posting that journal entry. If you don’t know what I am talking about scroll down to the post on February 23rd at 7:31and take a look. If anyone wants to help by forwarding the letter to your address book, please email help4BrookeHealey@gmail.com.

No news is good news. Hope you don’t hear from us soon!

Steve

Believe in Brooke Fundraiser Update!
Written February 28, 2013 4:47pm
Hi All –
Great news today about Brooke having such a good day….to say she deserves it (they all do) is an understatement!
I am very excited to announce that our Believe in Brooke fundraiser being held on March 16th at The Grand Summit Hotel is sold out! If you haven’t registered as of now, we do have a waiting list. If your payment/registration was received today or anytime after, you will be added to a waiting list. If we find out that anyone already registered is no longer coming, we will offer you a spot. If we are unable to accomodate, you will be notified and your payment will either be sent back or if you choose, will be kept as a donation.
Other fundraising updates:
Sunday, March 3rd – Yogathon
• Where: Indigo Gymnastics, Central Avenue, New Providence, NJ
• Time: 8am – 10:30am (only those age 13 and up are eligible to attend)
• Cost: $30 per person (all proceeds will go to the Heartworks fund in Brooke’s name)
Saturday and Sunday, March 9th and 10th – NP Rec Center Theater presents “The Emporer’s New Clothes”
• Where: The NP Rec Center Stage, 60 Elkwood Ave, New Providence
• When: 3/9 – 7pm; 3/10 – 3pm
• Cost: $3/ticket – Ticket sales for this event will be donated to the Heartwork fund in Brooke’s name. The $3 price is a suggested donation.
The Connection in Summit will also be selling t-shirts, bracelets and car magnets beginning next week. Other sites where bracelets can be purchased are:
New Providence:
Elefante Music
Zita’s Ice Cream
Old Glory
Allen W. Roberts
NP Presbyterian Church
Prestige Diner
Avenue Deli
Towne Deli
Marion Deli
Paolo’s Kitchen
M&M Liquor
Providence Liquors
Madison:
Doodle Bugs
Madison Pharmacy
CJ Deli
Main St Subs
Romenelli’s
D Torr
Alfreds Sport Shop Madison Bowling Alley
Madison Medical
Chef Loryn
Adams Dental
Hair We Are
Walgreens
Somerset Bank
Marc Anthony
Chatham:
Hickory Tree Pizza
Hickory Tree Deli
Berkeley Heights:
Respira
Gillette:
Meyersville Inn
Morristown:
Grill Cheese Factory

For those registered for our March 16th event, we look forward to seeing you there and making it a great night to BELIEVE IN BROOKE!
Any questions, please email me at bbratz@optonline.net.
Thank you,
Barbie

Exciting news!

Written February 28, 2013 9:43am
Brooke has felt great since we left our second meeting yesterday. A few mood swings and some irritability but overall is doing fine. She woke up giggling and in a great mood. Slept the car ride in, as usual, but wanted to play in the RT waiting room when we arrived. She has only done this 1-2 other times and was groggy. Today she was alert and cheerful. Brooke walked herself into RT for the first time ever and became alert rather quickly after waking up from anesthesia.

GOOD DAY SO FAR!

In my amateur opinion (Actually I considered myself an expert and have given myself a PHD in DIPG), I believe we tried to ween her off the steroid too quickly. One of our MSKCC Day Hospital nurses was so surprised to see her an how well she was doing today.

Brooke is playing in the playroom with one of her friends we see in RT everyday. We are free to go home, but we want to check in with our Nurse Practitioner, Mary before we go. MARY IS AWESOME! Between Mary, Dr. Souweidane, and Dr. Dunkel, we are in good hands at MSKCC and are happy to back here and in our regular routine.

Other exciting news is we will be moving to a new websitewww.brookehealey.com for future updates. I will continue to post here for now, but moving forward we will be making the switch probably over the weekend. Thanks to Jill Driscoll for getting the site up and running and loading all that is there right now. We will most likely be transferring the Journal entries and pictures by the end of the weekend. The move is so we will have more control over what we want published and to get rid of that donation button that has caused so much confusion.

More details to follow. Thanks for you continued support and prayers!

Steve

There is always something…
Written Feb 27, 2013 9:29am
After Dr. Souweidane read the CT and decided there was no need for surgery, he said to watch her for few hours and send her home. PICU says no way she should stay the night. There clearly is some kind of pissing match going on and we are in the middle of it.

Dr. Souweidane orders a transfer for us to go back to MSKCC. This is good because they see Brooke every day and know the drill. Cornell’s PICU informs us that MSKCC can’t find us a bed and can”t admit Brooke. Maybe by 9:00pm last night. This was around 2:00-3:00pm yesterday. OK no problem. Stef and I feel that it can’t hurt if Brooke is monitored some extra time. We make sure Cornell’s PICU is aware of our 7:00 RT appointment at MSKCC and make sure that we need to be transfered back before 7:00 am today. PICU doesn’t think RT is such a great idea and doesn’t feel the need to rush us back to MSKCC. Dr. Souweidane says in no uncertain terms: “Brooke needs to get back on her RT schedule immediately.”

We are informed at 9:00pm that MSKCC still doesn’t have a bed and we will be staying the night at Cornell. OK, no problem as long as we are transfered before 7:00am today. They assure us this will happen.

A PICU nurse comes in our room and informs us that they need our room in case a patient with the flu or in need of quarentine is admitted. We get moved to another room with 3 infants and buzzers and bells going off all night. Remember we had a single before the move.

OK, still no big deal. Stef and I decide we are going to remind the staff at 6:00 am we need to get our transfer going. In the meantime, the new nurse assigned to us in our new room appears as if this is her first ever shift. Case in point…Brooke has been asking to go to the bathroom every 30 min or so and getting up herself. I would carry her to the bathroom and Stef would follow holding the IV bag. We ask the nurse to come over and disconnect the IV from the machine so we can do so. While she is fumbling through the IV line, I disconnect the heart monitor and pulse reading device. At this time she turns to me and says “This seems complicated.” She calls for our old nurse to help her. The old nurse opens the door and takes the line out.

We are now set up on a pole and can disconnect her as we please to go to the bathroom. The rest of the night runs smooth.

At 6:00 am Stef asks the nurse what’s going on with our transfer? Answer: “What are you talking about?” We run through the story for the nurse and she calls the doctor. They claim to know nothing about it and were not informed at the start of their shift. As they are looking into it. I tell the nurse I want to discharge Brooke and and sign off on any paperwork. She immediately calls the Doctor back in. The doctor tells me I cannot do this and that she called for a transfer. It should be here in a reasonable amount of time. I ask “What exactly is a resonable amount of time?” She says a couple of hours. I again state “I am signing her out and carrying her across the street myself.” She informs me that you can’t do this for a child only yourself. Now, I snap. I tell them to disconnect her IV line from her port or I will. The doc says if I do she has to call security. I tell her whatever you need to do, I will be at RT at 7:00.

About two minutes later she comes back and says transportation is on their way right now. They disconnect Brooke and I pick her up and put her on the stretcher. We go go for a 30 second abulance ride and go straight to RT. Transport says we can’t release the patient unless a doc or nurse receives Brooke. A nurse comes out of the RT room and says “I receive her.” I pick Brooke up and go to the RT waiting room.

By the way, before we left Cornell, I checked our original room and it was still vacant.

What a fiasco!

The RT technician comes out and says the RT machine is broke. Really, I can’t make this stuff up. At this point Stef and I are thrilled to be back at MSKCC and can only laugh. They send us upstairs to wait until they get the machine going. About 30 minutes later they call us and put us on a different machine. This is where it gets fun.

When anesthesia goes to access Brooke’s tubes from her port, they notice red caps instead of orange caps. PICU used the wrong caps for her port. They try to flush the port and it doesn’t work because the red caps were jammed on and crushed the valve. Now we are trying to change the heads on the port valves and Brooke starts to get real aggitated. They think they fixed the problem and start flushing the line and blood is squirting out over Brooke and me. Brooke sees the blood and starts crying. They change the heads over agian and get the anesthesia in. While she is under the fix everything they need to.

We are now upstairs. Brooke has eaten. Feels OK, and we are waiting for our two meetings. I THINK we will be going home this afternoon after our meetings, but I am not that dumb to expect anything is going to go as planned.

Really, Stef and I are tired, but think this whole thing is funny at this point. (Since learning Brooke does not need surgery.)

We had one meeting and are now waiting for the other. Brooke is a little more tired than usual right now, but the steroid dose was taken at 9:00 and takes a couple of hours to kick in.

Fun times!

Steve

Sigh of relief…for now
Written Feb 26, 2013 2:11pm
We couldn”t get an MR scan until 7:00pm. Dr. Souweidane ordered a 2nd CT. He actually came to the CT room with us and read it instantly. In his words: “I am completely underwhelmed by all the scans.”

He feels the swelling is a side effect of RT and not hydrocephalus. That means he feels there is no need for any type of surgery. He wants us to continue RT tomorrow on schedule.

Every doc and nurse on our floor thought we were nuts when we told them. Dr. Souweidane is the best there is and we are confident with his decision.

They are going to monitor Brooke and see how it goes. Dr. Souweidaie said “for a couple of hours” and the floor nurse said “there is no way you not staying the night”.

We will see who wins this one. I think the nurse might get the call. The PICU unit operates separate from the Surgical unit and we are considered under their care.

Steve

The waiting game
Written Feb 26, 2013 12:50pm
We were transported by ambulance to Cornell from MSKCC. It was about a 40 yard drive. By the time they loaded and unload her I could have carried her across the street.

The nurse said she is surprised she is as steady as she is. She said that every other case she sees, there is a steady decline. She comes in every 15 minutes to check her pupils and vitals. They have been good so far.

On the other hand, the PICU doc said he feels some form of surgery is almost certain.

We are still waiting for Dr. Souweidane to get out of surgery and come talk to us. He is the same surgeon who preformed the biopsy.

Irronically, we are in the exact same room we were in after recovering from the biopsy.

I am hoping they can control this with the steroid and she will not need the surgery.

Steve

Another obstacle
Written Feb 26, 2013 10:17am
Brooke had her regularly scheduled RT this morning and then got very drowsy. Almost unresponsive.

We canceled PT and OT and brought her upstairs to be evaluated.

We are moving across the street at the advice of the surgical team to Cornell Medical Center.

Brooke will most likely get an MR scan and they will determine if surgery is the best option.

They have also increased the steroid dose, but said if we need it so soon it will most likely be a temporary fix.

Back…….
I just saved this as a draft because she asked to go to the bathroom. As Stef and I were taking her to the bathroom she started to snap out of it. She is now sitting up and talking. she keeps calling me a hamburger and mommy a cheeseburger and laughing each time.

We still need an MR scan and the nurse believes that the swelling goes in waves and she will peak in and out of this.

Start the prayer train again!

Steve

We are Home!
Written Feb 25, 2013 5:58pm
Brooke is very tired, but happy to be home. Off to NYC tomorrow for RT at 5:45.

Thanks for the support everyone!

Steve

Love and hate that steroid
Written Feb 25, 2013 2:05pm
WOW! Like someone flipped the light switch. One minute she was sleeping and barely responsive and the next woke up asked to go to the bathroom. After she went to the bathroom, she continually became her normal self (as in the last week or so).

She started talking and giggling and asked to watch a movie. We called the nurse in an I could see the relief in her eyes. She immediately ran to inform the nurse practitioner and surgical team.

Assuming she stays alert, the plan is to try and feed her in two hours or so. Watch her a couple more hours, and if she tolerated the food, probably send us home. If that happens, our RT schedule resumes tomorrow and we will just tack on a session at the end.

Although very promising, we are not out of the woods yet. We still need to hear from the surgical team and see if she eats and keeps it down.

The preliminary thought is we tried to ween too quickly and there was some swelling issues that created this. We will most likely go back on a slightly higher dose of the steroid and begin to ween at a later date.

As much as I hate this steroid, it seemed to do the trick today.

Hopefully my next post will be that we are heading home sometime around 6:00 or 7:00pm.

Thanks for the prayers!

Steve

RT canceled…still waiting for answers
Written Feb 25, 2013 11:35am
Brooke woke up and vomited. We gave her the suggested dose of her nausea medicine. She slept the whole ride into NYC and vomited again when we got there. That is not supposed to happen.

After her port was accessed, the anesthesiologist canceled RT for the day. They ordered a CT and it showed some fluid in her ventricles has increased since her previous scan. They do not know if that happens during RT or not because they usually don’t do scans during RT unless there is an issue.

They are giving her a huge dose of steroid to see if she responds. In the meantime, the neurosurgeons will look at the scan and decide to wait or see if they feel this is the beginning of a larger issue that requires surgery. Either a shunt or some type of bypass of the brain fluid.

If we are lucky, Brooke responds to the larger dose of steroid. If not, we need to do what we need to do.

I think the steroid will work and we will be home tonight. I can wake her up and get her to respond. If I pick her up, she hugs me. ALL GOOD SIGNS that it may not be a bigger issue.

START THE PRAYER TRAIN!

I will keep you posted when we speak to the surgeons. Probably 2 hours or so. We should see if the steroid is working by then as well.

Steve

Princess party is a success!
Written Feb 24, 2013 9:20pm
Brooke had a blast. Check it out for yourself with Alissa Rust’s princess pics.

We really need to thank so many people that pulled together to make this special for Brooke and the gang. First of all Allen Galorenzo. What a special guy. He started his foundation, The Daniel Galorenzo Foundation, in memory of his son Daniel, a Seton Hall Prep wrestler who suddenly died after a wrestling match in 2002 of an aortic aneurysm.

Allen, Stef and I met for the first time today and shared some tears, smiles, and I think we were both grateful for what each could do for one another. Stef asked Allen, if providing these opportunities for children with life threatening illness helped him, and he said it does. I hope I can attend their annual golf outing fund raiser at the Knoll this year.

Along with Allen, there were many more. Thanks to Barbie, Allen contacted Sweet and Sassy of Old Bridge, NJ. They pulled out all the stops. Allen and the owner of Sweet and Sassy were competing over who could provide more for Brooke. First of all, the stretch pink limo ride would have been enough for these girls. They had pop music blaring, they were singing, dancing, talking, laughing, and the adults were drinking mamosa’s! When “Call me maybe” came on the radio, Brooke started head bobbing and dancing with her arms. Stef immediately welled up. She was having fun!

So when we pulled up, we were greeted by the entire staff and 3 princesses. All the girls (and Ashton and Ryan) got out of the limo on to a pink carpet and walked inside. Brooke was last, and all the staff and princesses were lined up on either side of the carpet chanting her name. See the pics.

After we were all inside everyone went to the back where they played freeze dance and talked with the princesses. The princesses were from a different company. I wish I could reference them, but I have no idea where they were from. Once they were warmed up, everyone got dressed up and each got announced as they strutted on stage in their dress/pirate costume. Brooke was last. She got to keep her Rapunzel dress. They sang and danced some more. All the photography was donated by Little Miracles Photography. Two girls took pictures the whole time we were there. They said they would email me a couple of disks when they were ready.

After dancing and singing, we moved to the side room for pizza, chicken fingers, and fries. There was a beautiful cake of Rapunzels castle that looked like it was on one of those food network shows. It was donated by Cupcakes by Jenn. Jenn told us that anytime Brooke needs a cake or anything the rest of her life that she will provide it for her.

We also met Marcella from Fabulous Creations. She created this personalized picture frame of princesses. This was displayed among the table filled with gifts for Brooke, including a three story Barbie dreamhouse with working elevator. The limo was packed to the gill with gifts on the ride home. After filling the the trunk, the inside, we spilled into the front passenger seat with everything we brought home.

The party goers also got goody bags to bring home.

Bryn even got her ears pierced today. That was comped as well. Brooke fell asleep on the Limo ride home, but has been talking about her party the rest of the day.

It was a great day for Brooke!

Steve

Fund Raising Drive
Written Feb 23, 2013 7:31pm
In an attempt to raise additional funds for Brooke we have drafted a letter asking for support.

We know almost all (if not all) of you reading this have already contributed to Brooke in so many ways. This letter is not so much for you readers as it is for people you can reach out to.

If 20 people send 20 emails out, and those each reach out to 20 more people, we can reach 8000 people in a matter hours. If the pattern continues, we will reach the masses. I know this seems like a chain letter, and I guess it is in a way, but maybe we can get additional support for Brooke so its worth a try.

If you are interested in sending the letter to family, friends, contacts, or anyone you feel could contribute, please send an email to help4brookehealey@gmail.com and a letter will be returned to you to forward to your contacts.

Thanks for all you have done so far and your continued support of Brooke!

Small Hiccup
Written Feb 23, 2013 10:44am
Brooke woke up this morning and vomited. We were told if this happens to call and bring her in to NYC. The concern would be a brain bleed.

We arrived at Urgent Care at MSKCC at 8:30 and are now waiting for a prescription and heading home after being discharged at 10:47.

Brooke seems to have a side effect of weening off the steroid. They are not concerned at all and gave us some meds if she feels nauseous.

Princess party is still a go. As soon as they fill our prescription we are heading to a diner for breakfast. That should make her feel better as well.

1/2 WAY HOME!
Written Feb 22, 2013 6:13pm
Today marks the day we have completed 1/2 of Brooke’s RT. 3 weeks down and 3 weeks to go. This week was busy, but ran quite smooth. By the end of the week, Brooke would reach under her shirt and pull out her “tubies” for the anesthesiologist to give her her injection. She actually smiled and laughed as she did it today. Let’s hope the next three weeks run smooth and we see significant improvement in her physical condition.

The RT is relatively easy, but we have so many meetings and therapies each day, it ends up stretching out throughout the day. I was insane to think I could go back to work after RT started. If we are lucky to be home by 2:00, I am on the phone, computer, emailing, faxing, copying, or whatever until I crash for the night. I am thankful I have enough sick days to cover my absence and Madison supports extended leave.

Make a Wish called today and confirmed Brooke’s wish was granted. We have tentative travels dates to Disney 4/11-4/17. I was also informed that the one week study we were supposed to be scheduled for the week of 3/18 is not confirmed. This was a week long study with a leading doctor in the field of DIPG, Kathy Warren at NIH (National Institute of Health). There would be more in depth scans of Brooke’s Tumor to learn how aggressive and what parts are the most/least aggressive. This may give us some clues as to what to try next. Hopefully this is just a scheduling conflict we can straighten out.

Sunday is Brooke’s “Princess for a Day” gift from the Daniel Galorenzo Foundation and Sweet and Sassy. Brooke, Ashton, Bryn, Rose, Katherine, Gracie, Ryan, and possibly Juliana will be picked up in a PINK STRETCH LIMO at our house. Make up, hair, dresses, lunch and other princess (pirate for Ashton and Ryan) stuff they do. She is looking forward to it.

Her mood improves everyday and its great to see her laugh and play. Tim Simo dropped off an official JETS jersey with “BROOKE” on the back and the #1 on the Jersey. Tim reached out to Rex Ryan (New York Jets Head Coach) and had it made up.

Also Abigail Breslin plans to visit Brooke sometime the week of the 6th and may be making a Celebrity Appearance at the fund Raiser on 3/16.

Keep praying as we plug along!!! The hard part hasn’t started yet.

Steve

Port is a good thing
Written Feb 20, 2013 4:55pm
IF YOU MADE A TRIBUTE DONATION USING THE CARING BRIDGE BUTTON AT THE RIGHT, YOU SHOULD HAVE RECEIVED AN EMAIL EXPLAINING HOW TO GET YOUR MONEY BACK. PLEASE FOLLOW THROUGH.

Sorry,

I am getting harassed (by Michele) to make an update. I guess things are running smoothly and I was enjoying the ride.

So Friday was hell. Saturday was mostly a day of rest and Sunday Brooke was feeling much better and back to how she was before her port surgery. Brooke felt so good she spent the afternoon at Grandma’s house. This was the 1st 5 hours span Stef and Brooke have been separated since the diagnosis, with the exception of when Michele took Stef to get her hair done. I was with Brooke at that time, so this time was a little different.

Brooke said she had fun, but was soooooo tired that night. Grandma said she did great and loved spending time with her, It was good for everyone.

Monday Brooke was a bit afraid of the unknown getting “accessed” with the port for the 1st time. She knew there would be no “ouchies” on her arms, but didn’t want anyone near her chest either. It was also still sore.

After the nurse accessed the port (literally 1-2-3 after she cleaned the area) Brooke was happy. The numbing cream works great as well.

Brooke said it was easier than the IV method and even said “It was not so bad” (with a little coaxing). She actually was hugging her “tubies” (tubes coming out of the port once she was accessed) on tuesday saying she liked them.

Tuesday and Wednesday were a breeze as far as following our routine.

We met with RT, OT, the Radiation Oncologist, Neuro Oncologist, and Financial Services today. Stef and I were concerned that Brooke has been showing symptoms recently that are more pronounced than prior weeks. Since we have been weening off the Steroid, we thought we were going to fast. The RT is supposed to shrink the tumor, but can cause some swelling at first, which would create symptoms. The steroid would reduce the swelling, but has nasty side effects. There is no science to determine how fast or slow you should ween off the steroid. We were even told if there is no improvement (or slight decrease) in physical symptoms, that is actually good. In other words, we have been reducing the steroid dose over the past few weeks and have not gotten worse, the RT is working.

We felt Brooke’s symptoms were more than a little worse. She was getting up at night to go to the bathroom on her own, but nows calls out to us because she can’t get up. She used to pick herself up off the floor and stand up and walk, now she can’t get up unless one of us picks her up. She used to be able to walk next to you holding her hand or walk on her own, but now she continually has her legs give out.

Today we were told by three different doctors that they feel this is not due to neurological reasons rather another nasty side effect of the steroid. The steroid creates muscle weakness as well as irritability, hunger, mood swings, and bloating. This is great stuff, huh?

Actually after discussing our concerns, it makes sense. Brooke is definitely weaker on both sides of her body, not just the left side where the issues were before. The doctors recommended we continue to decrease the dose and we agreed. They emphasized this is just an educated guess and we need to pay attention to make sure symptoms do not get worse, so we hope the steroid is causing the weakness we see. By the way, you can’t just cut the steroid out all together because there is a whole host of other side effects that come along with withdrawal. I CAN’T WAIT UNTIL SHE IS DONE WITH THIS STEROID!

Anyway, with any luck, we will see no signs in the coming week and can continue to ween her off the steroid. We may actually see improvement. We met anther DIPG patient today and his mom told us that when RT is done we will not notice anything as far as symptoms and will not be able to tell she has a Brain Tumor. SOUNDS GOOD TO ME!

One last note, Brooke is becoming herself again as far as attitude and personality as we keep weening her down. So even though the physical symptoms have increase (hopefully due to the steroid), mental state is improving each day.

Grandma can attest to that as she shared the day with Brooke at MSKCC today!

STEVE

Fundraising Update
Written Feb 18, 2013 8:57am

Hi All –
First of all I’d like to thank everyone for their support and donations thus far. Our efforts and your donations are already helping the family. I want to mention a few events that have taken place recently to raise money for Brooke.
• On Saturday, 2/16 Nicole Poplawsky, Colleen Bulger and Meghan Betz hosted a happy hour event in Hoboken at the Pour House to raise money for Brooke!
• Also on Saturday, 2/16, Stephanie Ticas, a 2nd grade student of Jill Driscoll at Pingry organized a bake sale to be held at King’s in Berkeley Heights. She asked her grandmother to bake everything and organized the event all on her own (with some help from her mother :))
• Sunday, 2/17, we had a committee of volunteers that sold t-shirts, bracelets and car magnets at the Jr. Varsity wrestling tournament at NPHS.
All of these events raised a significant amount of money for our cause! These are just a few examples of the effort and thoughtfulness that people have shown over the past month for Brooke. It’s heartwarming, humbling and amazing to see our community coming together for this special little girl! Keep up the good work everyone and again, thank you!!!
I’d also like to mention another organization that has done something special to bring a smile to Brooke’s face. Operation Bling Foundation (OBF) is a NJ 501(c)3 not-for-profit whose mission is to give sparkling jewels to cancer patients during their hospital stay bringing them cheer and pleasure. Operation Bling was started by Christine Ferdinand of Ferdinand Jewelers in NP. She gave Brooke and Stefani matching necklaces and an extra necklace to Brooke as well. Sometimes it’s small gestures like this that bring a smile to someone’s face during a very difficult time. The Bling Collection is awesome so I encourage you to stop by Ferdinand to take a look for yourself. You can also read more about the organization by going towww.operationblingfoundation.org.
As a reminder, our big fundraiser is being held on Saturday, March 16th at the Grand Summit Hotel. Tickets are selling out very quickly so I encourage you to get your registration forms and payment in this week! For those of you that have already registered, thank you…we’re looking forward to a great night! Also, don’t forget to bring $and or a check to get your raffle tickets and to participate in our silent auction. A list of items will be posted prior to the event to make everyone that is coming aware of what they can possibly win!
I know many of you have expressed interest in helping in some way and it is very much appreciated. There will be future events held that you may be asked to help with so please stay tuned!
As always if anyone has any questions, needs a registration form or would like information on how to donate to Brooke’s fund, please don’t hesitate to contact me at bbratz@optonline.net.
TEAM BROOKE!!!!
Barbie

ROUGH DAY FOR BROOKE
Written Feb 15, 2013 11:51pm

It was a long day of unexpected turns and twists leaving a 4 year girl confused scared. Stef and I are physically and emotionally drained. I know everyone wants to know she is all right so I decided to get up from my nap and fill you all in.
Here was the plan. Wake up at 5:00 am get Brooke in the car by 5:15 and get to NYC by 6:30 for our pre operative procedures on the 9th floor. RT at 7:30 on the 2nd floor and hopefully transfer Brooke to the OR on the 6th floor while still under sedation. We knew there was a likely chance she may have to wake up from the local anesthesia before going under the general anesthesia. That went off without a glitch.
By 10:00 we should have been to recovery and Brooke could have eaten and started recovery. We were informed that the OR was not quite ready for us when her RT was finished and “it would be a few minutes before the OR was ready for us”, so we went back to the 9th floor to wait. This was our normal routine. The Pediatric Day Hospital is on the 9th as well as the playroom. Stef and I decided to sit somewhere different than we normally do because we didn’t want Brooke to start asking for food.
I was a little bummed because Brooke knows her routine so well now and wants to eat and drink within about 20 minutes of waking up. As we sat and waited for the OR to be “ready for us” an hour and a half ticks by and Brooke never fully comes out of her sedation because we can’t give her any food or water as she needs to go under one more time. I am getting pretty aggravated. I am ready to start chasing people down and figure out what the hell is going on when we are told “the OR is ready for us” and transportation is on its way.
We get escorted down to the OR on the 6th floor and brought to a staging area. The nurse was very attentive and put a TV on for Brooke. She went through the plan and explained exactly how everything would go. Then we waited. Waited some more. Then surgeon comes out and explains the procedure and tells us the previous patient is running behind schedule and they need to clean the OR to get ready for us. Then we spoke to the anesthesiologist, who by the way was Dwight Shrutt from The Office. I kid you not, he looked like him, acted like him, talked like him, and had his same quirky personality and sense of humor. He was a strange bird.
Well Dwight explains to us the procedure and just lingers. Sometimes he speaks and sometimes he is just there. It was weird. He too, tells us they need to clean the OR. We wait some more until finally they tell us they are ready. Brooke should have been done and out by now, probably even have eaten or drank something, and we were just getting started. They told us it would be an hour.
Stef and I head downstairs to grab a bagel or something after they take our cell #’s in case they need us. We get back in plenty of time, and when the hour is just about up, the nurse calls for us and asks us to go to a conference room. This is a bit odd as EVERY OTHER SURGEON SPEAKS TO THE FAMILY IN THE WAITING ROOM. We go into the consultation room and are left for the surgeon to meet us. It was probably minutes, but fell like 20. Long enough for Stef and I to have a conversation about “Why are we being brought to a consultation room?”
Surgeon walks in and says, “THERE ARE TWO PROBLEMS.” He begins to explain about the procedure when Stef cuts him off and says “IS SHE OK?” He smiles and shakes it off and says “Of course.”
ARE YOU KIDDING ME? That is how you start the conversation.
He goes on to explain that he started the procedure on her left side but the artery wouldn’t take the guide wire. They changes sides and the right would not accept it either. On the third attempt…I cut him off again. “DOES SHE HAVE A PORT RIGHT NOW?” He again smiles and says “Yeah”. Oh sorry to interrupt your story.
On the third attempt they cut an incision in her neck to use an artery there, fished the tube back to her chest under the skin to where the port is. So she has three incisions instead of one. He starts to explain that they normally do an X-ray to make sure the lungs have not collapsed behind where they were working and there are no bleeds. He explains that they did that but he wants another. We ask “WHY?”
He says “I AM NERVOUS”. Here we go.
It’s like pulling teeth. I hit him with if you are the surgeon and you are “NERVOUS”, what do you think I am? I ask, “NERVOUS ABOUT WHAT?”
Basically he ends up saying because they did the procedure three times he wants to make sure everything ran smooth. BAD CHOICE OF WORDS DUDE!
Here’s where it gets really aggravating. We need to wait an hour to get the X-ray and wait for a doctor to read it before Brooke can eat or drink in case they need to do something. I know that the only way she shakes the anesthesia off is to eat and drink. Not to mention she is on this nightmare of a steroid that makes her irritable and hungry to begin with. OK, so we wait for the X-ray, the technician says she got a “good one”. Great, because this was an ordeal with a kid screaming “get me out of here, I want to go home!” for two hours. We wait the hour for it to be read only to learn the friggin technician had her positioned the wrong way and only can see one lung and not the other. REALLY…no, no, no…REALLY?
OK, so what’s the plan? We either need another x-ray or wait for the surgeon to read the film, but he is in another surgery. They decide to wait. I ask, what if we wait and he reads it and decides to get another x-ray, why don’t we get the other x-ray anyway? Of course, the nurse can’t order the x-ray, only the surgeon can. Perfect. Next question, “Can she eat something or at least get a drink?” NO
The surgeon decides (an hour later) that the scan is “good enough” to see there are no issues, but they want another x-ray on Monday to make sure. Stef is in a panic. She asks, “Are you sure we should go home?” They say yes, if there were any issues, they would have seen something by now. I ask, “Then why the x-ray on Monday?” We get the “Just to make sure” answer. UGHHHHHHHHHH
Anyway, we go upstairs to the 9th floor to recoup. Oh wait, it’s been 6 hours since the surgery, Brooke is beyond recouped and starving. When we get there, she drinks and eats some fruit and noticeably starts to feel better. They don’t even put us in a room, leave us in a wheel chair in the hallway and say we can go when Brooke is up to it. After crying “I want to go home” for 6 hours, Brooke decides she wants to finish her fruit before we leave. Obviously we wait. It is now 4:30 and this is Brooke’s 1st food or drink all day. At this time we learn that the surgery just before us went awry. That was the original delay and as we put the pieces together, some other things make sense. We think there was a bleed and think the patient is now OK. Think back to these two remarks. “We need to clean the OR” as we waited 30-45 minutes. “I am nervous”…sure as you have another patient whose surgery didn’t go well.
We get to the car just in time for rush hour traffic, and Brooke completely crashes. Out like a light, exhausted from crying all day and sore from her surgery.
We hear on the radio there is a 1 hour delay at the Holland tunnel. Perfect way to end the day. As we are waiting in traffic (I think we moved 30 inches in 10 minutes), I notice a Hot Pretzel guy. I tell Stef, “Jump out and get us a pretzel.” We are both starving as well. She walks up half a block, and comes back (I didn’t move an inch) with the pretzel. We shared a COLD Hot Pretzel off the streets of NYC and continued home.
This day was gut wrenching. We left at 5:15am and pulled in the driveway at 6:48pm. Brooke ate dinner and went to bed.
Stef and I both had a drink. I think Brooke will be fine. I also think we are going to be way better off with the port, but what an ordeal. I feel so bad to have to put her through this stuff on top of everything else she is dealing with and doesn’t understand. How do you explain to a 4 year old that it is for her own good?
Anyway, tomorrow will be a better day. We are thankful we have 2 days off.
Steve

Message from Aunt Michele
Written Feb 14, 2013 8:10pm

BROOKE IN THE NEWS AGAIN!
Madison patch 1
Madison Patch 2
Alternative Press – Madison
Hi everyone,
This is Michele (Brooke’s aunt/Stefani’s sister). Steve asked me if I would like to write today’s journal entry- and I am honored, although I’m actually a little bit nervous (we all know he’s a tough act to follow!). But since today Brooke invited me along on her trip to the hospital, I would love to share what our day was like.
Steve, Stefani, Brooke, and I left the house for NYC at 6:00 am, and parked the car by 7:15 (by the way, the parking space is being loaned to Steve and Stefani during Brooke’s RT by a generous man who happens to work on the same block. All we had to do was cross the street to get to the hospital- it couldn’t have been more convenient if a helicopter literally dropped us off in front of the entrance, that’s how great this spot is). We were the first patients in the pediatric waiting room, so we hung out for a few minutes until another family came in (their daughter is 6 with a similar diagnosis, but not the same). I realized quickly that you get to know the other families quite well; this isn’t even two full weeks of RT and already Stef and Steve know many people’s stories.
Soon enough, Brooke was called into her RT, so the three of us walked her back while she was given her anesthesia. She was done shortly after, and then she was (finally!) able to have something to eat. That perked her up enough to go into the playroom. Now, I trust Steve (with the help of my Uncle Robert) completely regarding the medical reasons for choosing Sloan so I can’t comment much on that, but I will say that from my viewpoint (as an aunt who loves her niece more than anything) that it is a wonderful place for Brooke to be. The playroom is amazing! The staff is friendly and helpful. The crafts are plentiful (crafts are Brooke’s favorite, but most of you probably know that by now!). There is so much kindness, attention, and affection in that room, and it must rub off on everyone because the kids all seemed to be having a blast. Today was a Valentine’s Day party. While Stef and Steve went off to an appointment, I stayed with Brooke and made Valentine’s day crafts, read books, oh!- and she got her face painted like a butterfly! Plus, she was quite excited for me to get my hand painted, and recommended I choose a unicorn (which of course I did… would I ever tell her no… to anything?). These days, Brooke can be a little more lethargic, even cranky, than usual, so to be able to share some fun time with her today was so special for me. I was so happy for her. And she is as cute as ever.
Once Stefani and Steve returned we stayed a bit longer and then left to get something to eat. Steve was really great about pointing out everything to me- other rooms they visit for various appointments, how they order lunch on the days they eat at the hospital, even the quickest ways to navigate the hallways- and I appreciated it. You never know when I may go back with them for whatever reason; but even more than that, I have always been, and want to continue to be, as much a part of their lives as I possibly can. And the fact of the matter is, this is a big part of their lives right now.
The day ended with Stef, Steve, Brooke, and Ashton spending some time at my house with Joe, Rose, and me. Tomorrow I go back to work… and Stef, Steve, and Brooke go back to Sloan. I have always had a tremendous amount of respect for my older sister, and for my brother-in-law, but it has increased tenfold (is that really a word?… sorry if it isn’t) in this past month. If you haven’t done so already, please read Steve’s mother’s guestbook entry from earlier today (under the name Stephanie Healey/Colangelo, aka “Grandma from Florida”). She said it perfectly. Stefani and Steve are amazing parents. I’d also like to add that they are amazing siblings. I feel blessed.
OK I know I have to wrap this up, but I have to mention a few more quick things: First of all, on behalf of my entire family, thank you all for your support through all of this. It has helped all of us more than you could know. I believe so much in the goodness of people. And although this is a difficult time, I also happen to wholeheartedly believe in Brooke, and in her future good health. I really do. And secondly, tomorrow is another surgery for Brooke- she’s getting her port installed at 8:30 am- so set your phone reminders and say a prayer (I know you will- you guys have all been AMAZING!).
Thanks for listening.
Love, Michele

BROOKE’S BUSY NEXT FEW DAYS

Written Feb 12, 2013 8:59pm
1st Brooke makes the news again.
DAILY RECORD

We decided to go ahead with the mediport and have the surgery scheduled for Friday. Brooke has bruises up and down both arms from puncture wounds and the nurses said it is becoming difficult to find new locations because her veins are so small and are collapsed because she is fasting for the anesthesia. I had a nurse give me a demonstration of how the procedure would go and how it would be accessed and I feel much better about it now. The reality is it will be much easier on Brooke in the long run. I can hear Brian Donnolly saying “I told you so” as I write this.

Brooke has an IV line in right now and they will use this to put her under all week for RT. Friday they will either coordinate doing the surgery right after RT (My idea) or do the surgery later in the day and have to put her under again. It’s up to the Anesthesiologist if they can make it happen immediately following the RT. She will be sore for a few days following the surgery. I think it is good the surgery is on a Friday and the port will not have to be accessed for a few days (while she is sore). The port will be near her collarbone and tapped into an artery. They will access it each Monday and leave the tubing taped to her chest for the remainder of the week. Accessing it it much easier than an IV and the area can be numbed with cream so she will not feel a thing. It’s pretty much a 1-2-3 and will not need multiple attempts, like an IV may.

She can leave the port in for as long as she needs. Since we know we have upcoming treatments after RT, this makes sense. The worst part of her doctor visits are when she gets “poked”. The actual “poking” takes a few seconds. Finding the right vein, holding her arm in place while she screams “Leave me alone”, “I want it to stop”, “I wanna get out of here” takes about 20 minutes. That is pretty much why we followed up on the port after Monday’s episode.

So that’s Friday.

Tomorrow we have a full slate. 7:30 RT on the 2nd floor, followed by 8:30 OT on the 1st floor, followed by Surgical team meeting to prep for Friday on the 9th floor. We have speech therapy and swallow test at 12:00 back on the 1st floor, but before that we have two meetings on the 9th floor. One with the neuro oncologist, Dr. Dunkel, and one with Radiation Therapist, Suzzane Wolden.

Fit in lunch, and playroom time and its a breeze.

Today we brought Ashton with us again. It’s amazing how excited he gets and how much fun he has when he is there. It’s going to be hard to leave him at home on days like tomorrow. The last time we left him home, he was hysterically crying and hanging on to us shouting “Don’t leave me!” I put him in our bed and left him watching TV. As we were pulling out of the driveway we saw him running to the back door and fell to his knees in tears. We just can’t take him all the time, but think we have some strategies the therapist gave us that will help. He has a calendar of days he can and can’t go. He has objects from me, Stef and Brooke he can hold or look at if he misses us, and some other stuff. It is hysterical to hear Ashton and Brooke talk about the trip to the hospital in the car. Brooke, the pro, tells him about things he will see or can do and Ashton tells her he will wait for her to wake up from her short nap so they can eat together.

As we were leaving RT, we were told that Brooke was exposed to someone with the Flu yesterday and they want her on some Flu medicine. GREAT! If she gets the Flu, they will stop her RT treatments until symptoms subside. I asked if it were a patient or a doctor/nurse and was told it is confidential and they can’t disclose that information. FANTASTIC!

So RT was done by 8:30 and we didn’t leave until 2:00. Largely in part to spending time in the playroom, but also because Brooke had a headache and we needed it checked out. We were told headaches can be an issue and to bring them to the team’s attention, especially if they persist or become intense. If we give her tylenol and it comes back in 4 hours (after the tylenol wears off) that is another sign of a possible brain bleed which would require a shunt. So yesterday she complained of a headache and it seemed to go away when I gave her some chopped carrots. Four hours later it was back. It again went away when I gave her some chopped strawberries, but we called the Pediatric day hospital at MSKCC none the less, They felt it was fine. So when she had one today after she was feeling fine, eating, walking around and playing, we wanted an evaluation. We were at MSKCC as it was. They evaluated her and said it was nothing to be alarmed about. They said if it were a severe enough headache we would know and she would be doubled over and not too responsive. She was just in a bad mood and would laugh or smile if we mention cake. Today was the day the kids made their own cake in the playroom kitchen. We have pretty much eliminated sugar from her diet based on some studies we are following. They felt that her possibility of low blood sugar could be giving her a minor headache. So we stayed for making cake and eating some too.

About six kids helped to mix the batter and make the cake. Brooke and Ashton were two of them. As it was baking, Ashton found some boys his age and played WI Star Wars. Brooke made a Marti Gras mask with mommy and I was discussing some research treatments with the parents of another patient at MSKCC. After the cake was baked the kids decorated it with icing they made together. The cake had 4 raisins in it. Anyone who ate a piece of cake with a raisin was awarded a crown. Ashton was jumping up and down with delight, “I want a raisin, I want a raisin”. There were about 20 pieces of cake served. Ashton had two raisins in his. After he asked Brooke if she wanted his second crown, and she said no, he gave it to Cierra, anther girl on Chemo who helped make the cakes with them. They had a blast.

When we got home, Grandma from Florida and Uncle Bob came by as did Joe and Rose, and Grandma from the shore. We had a private magic show by Simon Mandal. He is excellent, we have used him before for other family functions and is a friend of the family. He did this one “on the house”. If you need his services, let Stef know and we will get you the info.

Brooke, Ashton, Bryn, and Rose were laughing and having a great time. Almost as much as their two grandmas. They saw magic tricks and participated in almost every one, learned a few tricks themselves, and each got some balloon animals. Ashton had to settle for a really cool fire breathing dragon, despite asking for a “Deer Head”. It was really a good time.

Some things on the horizon.

Former Pittsburgh Steeler, Darnell Stapleton has caught wind of Brooke’s story and wants to come visit her in the upcoming weeks. This was put together by Sam Davis and her boyfriend, Matt. Stapleton also played for Rutgers and was a Center/Gaurd for the Steelers and was part of the SuperBowl XLIII championship team that dropped the Cardinals in 2007.

Pop singer Taylor Swift also caught wind of Brooke through Marylin Bratz (Barbie’s Mom) and is currently supporting a purple bracelet with Brooke’s name on it (like the one in the archive pictures). She has also shown interest in meeting Brooke and has asked Brooke to come to one of her shows at the Prudential Center in Newark on 3/27/13. She is going to acknowledge Brooke with a shout out and bring her up on stage to sing a song to her. WOW, HOW COOL IS THAT FOR A 4 YEAR OLD GIRL! As a result we will probably be moving our Make a Wish Disney trip a little ahead or back to fit this in.

Steve

Smiling Today
Written Feb 11, 2013 8:46pm
So Brooke is smiling more and more each day. Is this easy, no. Has my whole idea of what a good day is changed…yeah, a little bit…

But I’m not looking back. I am looking forward. And today was a good day. Brooke had to be “poked” which meant she was “accessed”, which means, she needed some sort of vehicle to get to her blood stream. Right now, that is an IV. It’s ridiculous. She HATES it. I don’t blame her. The nurses hate it, we hate it, Brooke hates it, and anyone within a mile radius of her probably hates it too.

However, she is already doing better with the IV poking then she was for the past few weeks. She is a fighter. She has it in her. She reminds of what the doctors say. She reminds me she needs to eat healthy. If she asked me if I bought the healthy chocolate one more time I was going to jump out the window. (I exagerate so i hope I don’t offend anyone with things I write…I actually want to kiss her huge cheeks when she asks me)

Yes, her cheeks are pretty big right now. Now, I am not saying that she is not AS Cute or even cuter.

We had a good weekend too. I will be honest. The weekends are a little harder for me. You’d think I would enjoy the time off, and I do. But, it’s more time to think and feel like I am not getting stuff done with her safe at the hospital. Now, as I am writing this, I am thinking, DUH…RELAX and enjoy your time with her, and the rest of the family. Well, I did actually.

We had Steve’s aunt Debi visit. That was a good. She came to my sister’s house. Brooke kept mentioning there that she had been there for a sleepover and she would like to do one again. At 10 am, that sounded like a great idea to me. When I said, Oh yes, Brooke is sleeping over Michele’s to someone, they kind of looked at me, and said, Oh, really? You are going to leave her side? Well, I had a mild panid attack, and realized, no i wasn’t. So i told Brooke that I would be sleeping over too. She said, NOOO! But I kind of just stayed and never left. She didnt mind. Her and her cousin had the BEST TIME!!! They laid in a little fort on the floor and giggled like only little girls can. Brooke was laughing so hard at silly things that she could barely catch her breath. Everyone…please….keep that in your heart when you hear your children do that. There is NOTHING like it. After a while, Brooke’s cousin decided that she would go sleep with her dad. My sister was on one couch, and I was on the other. Brooke decided to join me on my couch. We snuggled all night. Actually, I contorted my body as to not disturb her all night. And she slept pretty good.

The next day, was also really good. A WONDERFUL woman Miss Sarah, from Sundance, came to Elefante Music, and did a music class for Brooke and a few friends. It was really great. The kids loved it. Brooke was a little overwhelmed, as she is lately in groups of people, but she had a great time. Miss Sarah brought two books, both of which were favorites of Brookes…from two years ago. To remember that meant a lot. What also meant a lot, more then Miss Sarah probably even knew, was the last song she sang. The first day we ever went to Sundance, the kids and parents all sat around and the teacher led us in a round of ” You Are My Sunshine”. I have always been a crier with certain things. Music and kids performing ALWAYS get me. I totally cried that first day at Sundance when they sang it. Can you imagine me when Miss Sarah sang it to Brooke on Sunday? I was a mess. It was good though. It was really special.
After that, my sister treated me to a day at the spa. I think I mentioned in my previous post that I have not been without Brooke for more then a couple of hours one time. We were gone for a few hours and it was fine. It was really great.
Steve was then treated to a Rangers game by Casey, and he invited Joe, his brother in law, and one of his best friends, Dennis. They also had a great time. Steve was a little tired this morning, but he said it was worth it!
Steve also thought it was pretty cool that Carlo Calabrese from Notre Dame tweeted about Brooke.
The amount of support from the coaches and athletes has been OVERWHELMING. I always knew that sports were very important for so many reasons. I did not fully understand the bond that comes with that though. I kind of just played some sports in high school (although my HS softball coach has been posting a lot! 🙂 ) and supported Steve for the most part throughout his coaching career. (Not enough now I think) The support from the athletic communities also brings me to tears. New Providence, Madison, Berkeley Heights, Morristown, Mendham, Hanover, ( there are too many to name) University of Rhode Island, Rutgers, Notre Dame, The Pittsburgh Steelers, they have all been supporting us. To be perfectly honest, i can’t keep up. Everyday I see something new, and we as a family are just so touched.

Back to today….Brooke started her IMRT today, so she was in RT a little longer. She took a while longer to wake up. When she did, and after she ate, she went to the playroom. She had a great time as always. There was a clown in there today, and he dropped his pants and we saw his underpants. It was funny, and it was a great way to remind her to smile a lot more during the day. Everytime I retold the story she laughed.

I named this post, Smiling Today, for that reason. Also, because, before I sat down and decided to post, I was smiling too. It was because of Brooke and also because of the many things that happened today that showed us how much so many of you care.

Now, Steve has come up her a couple of times, to “remind” me of what to add to this post. I know how you all think he is such a great writer ( and i do too..i am so proud of him) BUT come on….give me some props too.;) He wants to hijack this post sooooo bad. But i told him, DO NOT get within 5 feet of me right now. Let me write my own stuff!
He did. He is being AWESOME and BROOKE and all of us are so lucky to have him. We are so lucky for so many things, which seems weird to write at this time, but we are.
I would trade EVERYTHING…..in a heartbeat, for this to not be happening, but it is. And however strange this may sound…the support we get….HELPS. Thank you. Thank you for helping us to care better for Brooke. She will beat this because of us, her doctors, her friends, family, teachers, prayers, positive thoughts, her siblings, and because of all of you. And mostly because of her strength.
THANK YOU and LOVE YOU ALL Stef

Events supporting Brooke…
Written Feb 9, 2013 3:28pm

By now you all know about our fundraiser taking place on March 16th at the Grand Summit Hotel. If you haven’t registered yet, there’s still time. Email me for a registration form at bbratz@optonline.net or you can download the form from the Team Brooke (Healey) Facebook page.
There are many other people and groups looking to help in some way and have arranged other fundraising events that I wanted to make you aware of…
February 16th – Happy Hour in Hoboken!
Where:
Village Pourhouse
205 First Street
Hoboken, NJ 07030
Time: 7 – 10pm
Cost: $55 for open bar, a portion of the money will go to the Brooke Healey Heartworks fund
February 17th – NPHS Jr. Varsity Wrestling Tournament
February 23rd – Warren Hills HS Wrestling Tournament
We’ll be selling t-shirts and bracelets all day at both tournaments to raise money for Brooke!
June 22, 2013 – Bikers for Brooke (from OLP in New Providence to Piscataway…more details to come soon. Look for the Bikers for Brooke Facebook page too!)
Per my earlier post, there are establishments all over Madison and New Providence selling bracelets as well! Idigo Gymnastics in NP is also selling their own t-shirts that say “I Tumble for Brooke”.
We’re also having car magnets made that we hope to have available by next week.
There will be more events and chances to donate/contribute going forward! Please continue the prayers, support and positive energy for Brooke!
Team Brooke!
Barbie

A day in the life of the Healey’s
Written Feb 8, 2013 1:19pm
We can laugh now, but what a crazy morning.

Stef and I decided we wanted to get the parking lot attendants coffee and doughnuts. Stef informs me she has some gift cards for Dunkin Doughnuts and to use those. The plan was simple. Since it takes me literally 5 minutes to get ready, I would run to Dunkin Doughnuts in the morning and Stef would get all meds and lunch bags together for the day. Well, at 5:50 am the alarm goes off. I get up and start getting my stuff together and Stef stats getting Brooke’s lunch and meds together and I run out the door. By the time I get back, she will have everything ready and we will jump in the car and go, right? NOOOOOO

As I am standing in line at DD, I realize I have no money and the gift cards probably will not cover the cost. Yep, $16.83 short. I literally start looking around for someone to borrow $20 from. Yeah, there were a lot of people around that I knew at 5:50 am. So, I drive home, get the money, drive back, pick up the coffee and doughnuts and rush back home. Normally I pack the car, get Brooke dressed and Stef does everything else. We had decided to bring Ashton along with us. There is a counselor there that is supposed to help him understand what is going on. Plus he has been crying, wondering why he keeps waking up and his “family is missing”. I get back to the house (20 min behind schedule) and Stef just finished getting the daily supplies ready. Ashton is supposed to be dressing himself, but he is in his room playing with robots in his underwear. Brooke is still in her jammers and Stef is stressed to the max. Clearly the addition of Ashton was a little more to the normal routine than expected. I get Ashton dressed, pack the car, Stef gets Brooke dressed and we go.

It starts snowing like a blizzard as we pull out of the driveway. We are worried about the snow delays and are already behind schedule. As it turns out, there was less traffic than we have encountered any other day this week. We think people either called in a day or used mass transit with the impending snow. Whatever, we got into NYC in about 45 minutes, which is about 20 minutes faster than normal. Back on schedule. We pull up to the lot we park in and…….. none of the attendants we have seen all week are there. There must have been a shift change for today. So some nice parking attendants we have never seen before got a box of joe and a dozen doughnuts. I told them I was thinking about them on a snowy Friday.

Oh, I’m not done yet. We park, get Brooke in a stroller, pack the stroller and head into the hospital. We are about 10 minutes early for RT. Whew.

Brooke asks Stef if she can take her medicine now (how about that), Stef goes to the stroller and looks for Brooke’s lunch box and can’t find it. We look frantically throughout the stroller and can’t find it. I remember putting it in the car, and she remembers putting it in the stroller. I go back and retrace our steps back to the car. I follow the same path, take the same elevator, look in open door ways on desks along the way, and reach the car. I search the car, no lunch box. I retrace ours steps back to the RT room, looking in NYC garbage cans, over fences, under cars, and get back to the RT room. I ask Stef, “Did you find it?” NO!

I go back again, ask every custodian I see, look in their garbage pails, peek my head in every door and ask every person I see. I stop every security guard and go back to the car. Search the car again. Nothing. Head back to RT room. Again, looking through garbage cans, asking anyone I see. Nothing.

As I get to the RT room, the nurse is asking for Brooke. I take her from Stef, Stef takes Ashton’s hand and we start going into treatment. A guy turns to Stef and says, “Did you lose a lunch bag? I just brought one up to the 9th floor”. Whew, another sigh of relief.

The 9th floor is the Pediatric Day Hospital. That is where we bring Brooke to recoup, and where the playroom is. At least we know it will be there when we go up.

As we are walking into RT, there is a little girl on a stretcher (like there is everyday) recovering from the anesthesia. Ashton shouts, “Is that a dead baby?” OH MY GOD!!!! Thankfully the parents (or any other parents) were still in the waiting area and were not in earshot of his comment. We explain that she is sleeping and will be out soon, like Brooke. The nurse carries her out into the waiting area a few minutes later and Ashton sees she is awake. I asked, “Is that the sleeping baby you saw before?” He says yes. Brooke was out shortly after.

Ashton had the time of his life and thought it was the coolest thing in the world to drive into NYC and see all the tall buildings. He drew pictures of the buildings he saw. Brooke showed Ashton the playroom, and they made monster magnets. It’s unbelievable they have a different fun activity planned for these kids everyday. Brooke was excited to show Ashton around and was happy he was there. We canceled all other appointments for the day and headed home to beat the snow.

We were home by 11:00 am safe and sound. Stef and I both took a nap on the couch while the kids watched TV.

Anyway, we are off till Monday.

Steve

Brooke Goes Hollywood!
Written Feb 7, 2013 8:28pm
Brooke had another amazing day. She was as responsive as yesterday and didn’t want to leave MSKCC. We had to convince her we were coming back and she would have plenty of time play there in the upcoming days. They really do a good job getting these kids minds off why they are there.

She felt so good, she wanted to visit Madison High School with me. We walked around and talked to a bunch of teachers and students. She got some Disney stickers and lots of high 5’s. She got tired out and we went home to play.

Hollywood? Yes, the title said hollywood. Glenn Mellusi’s grandfather is friends with the Breslin family originally from Summit. He was thinking of us and relaying the story to them. They reached out to their daughter, Abigail Breslin, and she wanted to meet Brooke. Abigail is one of the youngest actresses ever to be nominated for an academy award. She has starred in films like My Sister’s Keeper, Zombieland, Little Miss Sunshine, Rango, New Year’s Eve, and soon to be released Ender’s Gain.

We have not set a date yet, but she did forward us a song she wrote. You can also check out her recent tweet about Brooke.

Hanover Park wrestling Coach James Lavalle also had his brother Jionni Lavalle (boyfriend of Snooki and father of her child) send a tweet out about Brooke. Nicole Polizzi (Snooki – Star of her own reality show) later retweeted Jionni’s message.

We have an inside scoop that one of the Housewives may be tweeting soon as well.

Steve

Buy your Brooke bracelet today!
Written Feb 7, 2013 10:22am

Hi All –
How happy was everyone to read Steve’s last post about what a great day Brooke had yesterday? That really made my day…best news I’ve heard in a while. And I couldn’t agree more…she’s going to be the first survivor…I’m more confident now more than ever!
Many of you have been asking where you can purchase a t-shirt or bracelet to support Brooke. Right now t-shirts are being sold at wrestling matches and tournaments primarily. On Sunday 2/17 we will have a set up at NPHS for the Jr. Varsity Wrestling Tournament where we’ll be selling t-shirts all day. Stop by and purchase one!
As for bracelets, they’ve been delivered all over Madison and New Providence and are being sold!
Please see the list of establishments below where you can get yours today:
Madison:
Madison Pharmacy
Main St Subs
C&J Deli
D Torr Boutique
Romanelli’s Pizzeria
Madison Bowling Alley
Alfred’s Sporting Goods
Hickory Tree Pizzeria
Madison Medical and Sports Rehabilitation
Madison High School
Madison Junior School
Central Ave School
Torey J School
Kings Road School

New Providence:

Old Glory Restaurant
Prestige Diner
Towne Deli
Marion Avenue Deli (they have t shirts as well)
Avenue Deli
Elefante music
M&M Liquor

More places will be added soon! Bracelets are selling for $5 each and t-shirts for $15 each.

Thank you to everyone for their hard work with this effort! A special thank you to Michelle Davis for being our bracelet contact!

TEAM BROOKE!

Best Day since Diagnosis!
Written Feb 6, 2013 8:48pm
I said I would stay away, but I couldn’t resist. Someone turned the switch on today and it was awesome!

Brooke literally whined and moaned the entire car ride to MSKCC each day and would fade in and out of sleep. NOT TODAY! Today she slept like a baby the whole ride. In the past if she were sleeping and we had to get her out of the car, she moaned and whined until we brought her to her treatment to be put under. When she woke, more moaning and whining and wouldn’t leave one of our laps. NOT TODAY!

We woke her up and she smiled. She talked the whole time and was laughing. She asked us to move her closer to a table where another little girl was playing and laughed and giggled with her. She whined a tiny bit when we went into the RT room. She moaned a tiny bit when she woke up. Understandable as she was a little groggy. She sat on her own and ate her breakfast. Normally she wouldn’t leave one of our laps. She got up from her chair and walked around. Normally, we would have to coerce her to do some crafts and help her to get started. NOT TODAY! She walked (instead of being carried) into the playroom and jumped right in at the craft table and got started. We had a meeting with the neuro oncologist and she was bummed we had to leave the craft table. Once we promised we would come back, it was all smiles and giggles.

Both the radiation therapist and the neuro oncologist told us we would not see improvement until next week sometime. NO WAY! There is no question something was different today. During our appointment with the neuro oncologist, Brooke asked Stef if she could take her back to the playroom. The neuro oncologist, Dr. Dunkel, and his nurse practitioner said she was doing so well to go ahead. I had some other discussions about future treatment options, the pathology report, and government trials I needed to go over, so I stayed.

When I came out, Stef informed me Brooke wanted to stay and play. They were making their own pizzas for lunch and Brooke was just giddy over the idea. She painted a wooden snake, because Ashton likes snakes, so it was for him when she brought it home. She did more crafts, made, cooked, and ate her own pizza. After 2 plus hours of crafts we finally decided to come home.

Jump back a day. Yesterday we were visited by Make a Wish Foundation and Brooke made her wish. It was to go to Disney. Interestingly, there was a coloring book activity she was supposed to complete before they came. There are four types of wishes, I WISH I COULD BE…, I WISH I COULD GO…, I WISH I COULD MEET…, and I WISH I COULD HAVE…

She was not herself yesterday, so I had to coerce to do the book with me. As I read her the wish types and ran through the sample possibilities, she just shook her head no. Of the 30 plus pages, she was only interested in three. She stopped at the page with the Disney castle and wanted to color it in. She stopped on the I WANT TO BE A PRINCESS and colored it in. She stopped on I want to fly in an airplane and circled it.

OK, back to toady. As I said she picked Disney yesterday. Today, I get a phone call from Allen Galorenzo. His son, Daniel was a Seton Hall Prep wrestler who suddenly and unexpectedly died after a wrestling match in 2002. He and his wife, JoAnn started a foundation in Daniel’s name. They reach out to families in situations like ours. You will never guess what he proposed (with some help from Barbie). There is a company called Sweet and Sassy that literally makes you princess for a day. Allen explained to me that they have different packages for different types of experiences, but Brooke was going to get the top of the line, deluxe, best they can offer package. This includes getting picked up in a pink stretch limo. Getting dresses and dressed up as your favorite princess. Hair, make up, the works! This is so up her alley (not mine until today). Sweet and Sassy called us and informed us there wanted to split the cost with Daniel Galorenzo Foundation.

We have not told Brooke about the Princess for a day stuff yet, but it is literally everything she asked for.

The rest of the night she walked around (1st time in weeks) played, sang, smiled, laughed, and was closer to her normal self since before the diagnosis.

The only thing Stef didn’t like about today is I was already writing this post and she wanted to write something. I am trying to convince her to just post again tonight.

There is some other medical news regarding the pathology and some of the choices we have made that I believe are promising. Without making this a book, I will summarize the last few words I had with Dr. Dunkel. I asked if he felt I was exploring the correct avenues of alternate treatments. He answered, “Yes, everything you bring to me has some possibilities and possible potential. Some of the things are not proven, but have been researched and believed to have merit for decades. Most people bring in some pretty far fetched ideas that I have to advise them not to try” I asked are there any other avenues I should be focusing the direction of my research. His answer: “No, if I were in your shoes, I would be doing the same exact things.” I asked if he thought I was nuts contacting the families of some of the survivors I have found to try and connect the dots. He said, “No, I think I would do the same.”

I closed with this. Have you ever had a DIPG patient survive? He said “Wellllll, I guess one. I am not totally convinced it was a DIPG though.” At that time, I shook his hand and said “Congratulations.” He asked for what. I responded, “I am about to deliver you your 1st.”

Steve

Socks for Brooke!
Written Feb 5, 2013 11:06am

Just when you think the support and love shown to the family is at overwhelming proportions, you receive this picture. Madison Athletics wears socks with Brooke’s name on them to support our little miracle. I say “our” because it’s obvious we’re all in this with them. While we all can’t begin to imagine what Stefani, Steve and their extended families are going through at this time, we all feel an obligation to do something to ease this pain for them and try to make things just a little bit easier, if we can. This seems small but for someone to have thought to do this for them as a way of showing support is awesome and inspiring.
I’m sure I’m not alone in saying we’d each do ANYTHING to change this and take it all away if there were some way to do that for them. Since that’s not an option, all of this support, be it a picture, a text, a donation, a gift, a hug, etc….all of it helps.
Keep this kind of support going….the road will be long but the support will be there throughout as they find that fork to Miracle Way!!!
Additional pictures of various wrestling teams and others supporting Brooke and the family have also been posted.
As a reminder, our fundraiser is being held on Saturday, March 16th at The Grand Summit Hotel. Email me for your registration form as you have to be pre-registered and payment received to attend. bbratz@optonline.net
Barbie

1st Day of RT
Written Feb 4, 2013 7:35pm
The commute to NYC isn’t that bad. We had to be in at 9:00 and left at 7:15. I say that day 1, lets see what I am saying on day 30. We are going in at rush hour right now, but we should be getting an earlier time soon. It took us 1 hr 20 min to get in and 40 min to get out.

Brooke’s worst part of the day is getting the IV line put in so they can administer the anesthesia. The last time we were in, the nurse had the whole process completed in about 4 minutes. I had her convinced that the pinch didn’t last long and the rest of the day would go easy. Well that blew up in my face. After 25 minutes of screaming, 3 nurses and 3 attempts at putting IV lines in, we finally got the IV to flush. The plan is to leave this IV line in for a week and while she is under anesthesia put a new one in and take the old one out. I am hopeful this will work. There is a risk the IV could come out or clot so it can’t be used. We are going to try this anyway for now. Option 2 is to have a medi-port surgically implanted in her chest. The procedure is simple enough and involves making a small incision at the collarbone. She would be sore for a few days and then it would be accessed by a puncture into the port near her neck each day. I am not ready for another surgery, no matter how minor, at this point. If this weekly IV thing isn’t working, we will pretty much have to go that route.

At 10:00, RT took about 20-25 minutes once we started. This is from when we leave her on the RT table to when the nurse brings her to us. I hold her in my arms while the anesthesiologist administers the drug. She literally goes limp within seconds and I lay her on the table. When she comes to us she is groggy and just coming around. It takes about another 30 min. or so for her to fully wake up. As soon as she does, she wants to eat. As she is eating you can see her perking right up.

Brooke and Stef went to the playroom and did some crafts while I had some research stuff I wanted to run past the doctor. We had to wait until 2:00 to go to Physical Therapy (PT). This should be coordinated better in the coming days. Because PT was more of an evaluation today, we could not get an earlier time.

Tomorrow, we have RT at 9:00 and a post surgical appointment at 10:00. I think we may be home before 1:00.

At 3:00 workers from Make a Wish Foundation are coming to speak with us and ask Brooke her special wish. I think it’s going to be Disney but I would not be surprised if she says Chicken Fingers and fries at Friday’s.

The RT is not painful and she should not get a rash or burn. There is a possibility we may have to increase the steroid temporarily if the RT cause some short term swelling. I hope not, I want her off this stuff as soon as possible. She is starting to look different from swelling up. If I can notice it, I can imagine how she will look to some of you who have not seen her in a few weeks. It also makes her irritable and so lethargic. I can’t wait until my baby is herself again.

Hopefully I will not be posting for a few days as everything is running as planned. So no news will be good news.

Thanks for following and all the continued support.

Steve

Registration for Fundraiser – Believe in Brooke Benefit
Written Feb 3, 2013 3:50pm
Hi All –
Everyone has been asking how and when to get their tickets for the fundraiser. Now is the time! Here are a few highlights for what we have planned and how to register:
BELIEVE IN BROOKE
• When: Saturday, March 16th
• Location: The Grand Summit Hotel
• Time: 7 – 11pm (7-10 open bar)
• Dinner/Buffet will be served
• Entertainment
• Raffle & Silent Auction
***If you would like to attend the fundraiser, please email me atbbratz@optonline.net for a registration form. There will also be a registration form uploaded to the Team Brooke Facebook page later today that you can download. Please fill out the bottom portion of the form and return it to the address included with your payment. You will be registered once payment is received. When you arrive to the event on March 16th, you will have to register at the door. Tickets WILL NOT be distributed. Please bring cash for the raffle. Checks will also be accepted. Registration is on a first come, first served basis, so register soon!!! If your registration is received after the event is filled, you will be notified so please be sure to include all of your information on the form.
We are looking forward to a great night of celebrating and believing in Brooke! As always, if you have any questions, please email me atbbratz@optonline.net.
Thank you,
Barbie

Brooke gets another mention
Written Feb 3, 2013 10:13am
Just another gesture we had no idea about.

Alternative Press – Madison

This will be short. Brooke starts RT tomorrow. Her symptoms are increasing. Stef and I are relieved we are starting.

She will get RT Monday-Friday for 6 weeks (30 treatments). She will also be getting physical therapy and occupational therapy Monday, Wednesday, and Fridays for now. Hopefully we can taper off the steroid and PT and OT. Her belly and face are beginning to puff up.

Although very tired, Brooke plays normally and continues to enjoy doing her crafts.

We visited a homeopathic doctor and got some remedies, but need to discuss them with the MSKCC pharmacist.

Steve

Believe in Brooke!
Written Feb 2, 2013 6:33pm

The support for Brooke continues every day, every minute and everywhere! Remember your tax deductible donations can be made at Heartworks and you need to put Brooke’s name in the notes section. So many of you have posted pictures of yourselves and your families in your GREY on Fridays supporting Brooke on Facebook. The support has reached the University of Rhode Island too! See the pictures added today of the Women’s Basketball, Softball, Track and Rowing teams showing their support, as well as the Men’s Baseball, Track and Golf Teams! All in their GREY and all praying for and supporting Brooke!
Patsy Davis, former Madison Wrestler, now at Del Val college put Brooke’s name on his headgear for yesterday’s match and the rest of the season!
Bracelets to support Brooke are also being sold across Madison, Chatham and soon, New Providence at various establishments. Buy your bracelet before they run out to show your support! All proceeds will go to the fund set up through Heartworks for Brooke.
The big fundraiser for Brooke will be held on Saturday, March 16th at The Grand Summit Hotel. You will be able to get your registration forms soon. I’ll post another update on when and where to get your form. We have a great night planned to support our little miracle, Brooke! Raffle, silent auction, dinner, open bar and entertainment!
The support for Brooke has been amazing so far! Let’s keep it up everyone. Pray for and Believe in Brooke!!!!
As always if anyone has any questions, please don’t hesitate to email me atbbratz@optonline.net.
Barbie

Back on Track
Written Jan 31, 2013 8:42pm
Stef, Brooke, and I headed to MSKCC at 6:30 this morning. Traffic wasn’t that bad except around the GWB. We had a few appointments that all ran pretty smooth. Brooke is reluctant to answer any doctor questions or respond to their exams. She has figured this whole act out and wants no part of it. The worst part of her day was getting another IV line put in and not being able to eat until 1:00. The steroid makes her hungry as it is and it is compounded when we have her fast because of the anesthesia.

Brooke did about 5-6 different crafts in between our appointments while we had a bout a 2 hour lay over. MSKCC has an awesome children’s room with lots of volunteers. She had three volunteers helping her be at ease and have fun. These people are great at what they do and know how to get the kids minds off where they are. This is a big part of why we chose MSKCC.

Anyway, the simulation was as smooth as you could imagine. She went under and was done and awake in less than 30 minutes. We gave her some apple juice and she perked right up. She ate some cereal in a matter of seconds like a starved elephant let lose in a peanut factory. The car ride home was not bad. She wanted to go to Friday’s (of course). So we called grandma and uncle Bob and had them, Lis, Ashton, and Bryn meet us there. Brooke was excited to see grandma and Uncle Bob, as were they to see Brooke.

We all headed back to the house and the kids had yet another christmas courtesy of grandma. We are running out of room for all these toys..lol. Everyone is asleep now, and grandma and Uncle Bob headed out until tomorrow.

We do have a tentative plan to start RT on Monday and should hear confirmation tomorrow.

Friday no plans. Saturday we head to Toms River to speak with a homeopathic doctor. Sunday we have another homeopathic consultation and are closing in on final plans for everything.

I am pretty pleased at how the day went.

I had a few calls to follow up on, but that only took a couple of hours.

I am gonna say, we all get to relax tomorrow, but I know I will get a call from someone and have to follow another lead. No big deal,this is my full time job. We keep making progress and learning more each day.

Steve

Rough Day
Written Jan 30, 2013 7:35pm
I am sure it is the beginning of many.

Brooke is none the wiser and had a pretty good day although she is so tired. I am hoping that once we start the RT and get her off the steroid it will be the difference. She had a visit from Roseanne (my sister-in-law’s sister-in-law) and played with her gifts. Hung out and watched some movies, and went to Color me Mine with Ashton and cousin Rose. Thanks to Toni Ipolito Anthony’s gift certificate. She picked “French Fries” as the ceramic item she wanted to paint. She painted the box red and the fries yellow. I helped. When I asked if she wanted to put her name or the front or maybe a “B” for Brooke, she said no and turned it around and put a smiley face on the back. When she was done, she said now they look like McDonalds French Fries. I am not sure what this french fry kick is all about.

My mother and brother are flying into town today. The kids are excited to see them and Mom and Bob are excited as well. The have just enough time to land and get to our house to spend an hour with the kids before bedtime. Their flight is delayed. Great. Not to mention my mother has travel issues with her medical issues. Now she is held up at an airport. Ok, no big deal, we keep the kids up a little longer and make it work.

Just like yesterday, minutes before we about to walk out the door, we get news from the pathology report about the Biopsy. I get an email alert. When I open it, here it what it reads. Mr. Healey: Dr. Souweidane just received the NYPH pathology report and unfortunately it confirmed that Brooke’s tumor is a DIPG. We will obtain the slides for review at MSKCC just to be sure.

That’s it. In an email. Hmm. No phone call, no further explanation, nothing. The only thing I left out was the signature line.

OK, so I brush myself off and get up again. I had been working on plan “B” throughout this whole sequence. I knew the odds were stacked against us. This was the 1st miracle I requested. The 2nd being we fight this thing head on and win! Doesn’t really matter how the miracle comes as long as it comes. RIGHT?

Oh, now we get word, my mothers flight is canceled and she stuck at the airport in FL. By the time she gets someone to pick her up (an hour away) and bring her back the next day, she might get 3-4 hours at home. She informs me she is sleeping there until 8AM tomorrow and is trying to catch a flight then. She can’t sleep at an airport in her condition.

As I am writing this, I get a text from her. She caught a standby flight and should get in around midnight. Thats good.

Anyway, sorry for the whining, but I am a little pissed off. Tomorrow we head to MSKCC to get the simulation for Brooke’s RT and set a start date. I think it will be Monday. I cancelled the simulation at CHOP. It looks like we are getting RT with no chemotherapy and exploring a vaccine trial immediately following. I will give more detailed reasons why in a later post. I can’t do this anymore tonight.

You can knock me down all you want, just understand, I will get back up.

Steve

UPS AND DOWNS
Written Jan 29, 2013 9:05pm
Brooke has been very tired lately. We do crafts with her and she enjoys doing them, but she just smiles and works on her projects. I have not seen the bubbly excited kid I have in the past until…….. we took her to see Wreck it Ralph tonight in Westfield. She was so excited and her normal personality perked right up.

Unfortunately, minutes before we left, we got word that she did not test positive for the HLA-A2 in her blood for the Pittsburgh vaccine trial. This was quite a blow. I followed the computer all day tracking the shipment to the lab waiting to hear.

Uncle Robert and I spent most of the day preparing for what we might do if this news came our way. I was on the phone with Stanford in California, University of Minnesota, CHOP, and Pittsburgh most of the morning. I also called 7 different Homeopathic specialists to see if we want to explore that option.

The good news in we made some headway with the homeopathic route. I will update more on that at a later time. I also secured a RT simulation with MSKCC on Thursday morning and another at CHOP on Friday. This was one of my major goals of the day. I will cancel one.

The original plan “B” was to go to CHOP and do the Vorinostat trial if we were not eligible for Pittsburgh, but that may change. Again, in another update at another time. We did finally make some headway with a possibility at University of Minnesota around 6:00 pm. I was actually in the movie when Uncle Robert contacted me after he finally got the Doctor in charge of the trial on the phone. I will speak to the doctor on the phone tomorrow.

BACK TO BROOKE! She talked about the movie whole car ride there and was laughing and giggling with Ashton. The four of us went, Bryn stayed home with Lis. Alyssa brought Corey (age 6 and Ashton’s friend) and Ryan (age 4) and we all sat together. Actually, there were only 2 other people in the entire theater other than the 7 of us.

In Stef’s words, “She was screeching with delight during the movie.” She was actually pointing at the screen and screeching is the only word that could describe it.

After the movie, Brooke wanted to “go to a restaurant”. Brooke’s version of a restaurant is Fridays. Primarily because all she wants to eat are chicken fingers and french fries. So guess where we went? She was thrilled and acting like her normal self. It was fun. Ashton had fun too. Toward the end of the meal, she pretty much crashed. As soon as we got home, she was in bed in a matter of minutes. Stef must have said 6 times what a great day this was.

I agree, but feel I noticed she needs to be with kids her own age more. I think hanging with me and Stef would be a blast, but maybe not for a 4 year old girl. Anyway, lets start making some play dates. She needs some 4 year girls to play with! (I guess I will allow boys too.)

Steve

Monday and moving forward
Written Jan 28, 2013 12:37pm
This morning we had to take Brooke for a blood test and have the samples shipped off to Pittsburgh to see if we qualify for a trial being conducted there. Luckily we were able to do it locally at our Pediatricians office (Summit Medical Group… about 300 yards from our house). So we were there and back within 35 minutes.

Other than her short appointment, she has been coloring and playing as normal. Brooke is tired and showing a few symptoms with her gait specifically. She is dragging her left leg slightly, but not as bad as she had in the past. She is being weened off the steroids and is currently on a 1/4 dose of what she had been on for two weeks. Tomorrow we cut that in 1/2 again, and Wednesday we cut it all together. The doctors told us she may start to see symptoms again, both because of cutting the steroid back and swelling from the surgery.

Brooke needs to begin Radiation Therapy (RT) immediately if this is in fact a DIPG. I am waiting to talk to our doctor at 3:00 today to set up the procedure. She will have to undergo a simulation before treatment can start and it takes a couple of days to set up the program with the Radiation Oncologist. The simulation includes a fitting of a mask she would have to wear to hold her head still during RT because it is directed at the tumor. She will have to under anesthesia once again for this simulation. I am currently trying to get all this set up and ready to go so she can start at the end of this week or at the latest Monday. RT will last 6 weeks (Monday through Friday) and she will have to put under anesthesia each time she gets treatment. She is too young to sit perfectly still during RT and it is important she not move and have the radiation reach unwanted parts of the brain.

If we hear great news from the Biopsy, we can cancel and take a different course of action. The biopsy results could come as early as Wednesday from Cornell, but the is a 2nd screening to be done at Memorial Sloan Kettering Cancer Center (MSKCC). Cornell will not release the slides to MSKCC until they are done with their testing. So we will not hear confirmation of the findings from MSKCC for about 10 or so days. Worst case scenario (Actually best case scenario), is we start RT and have to pull out if these Biopsy findings show it is not a DIPG.

Once we know the results of the Biopsy and blood test results from Pittsburgh, we will have a treatment plan in place.

If it is confirmed to be a DIPG and Brooke does qualify for the Pittsburgh trial, we are going to get RT at MSKCC and follow up with the Pittsburgh trial 4 weeks later. The Pittsburgh trial is a vaccine along with a immune system boost. The kids in this trial appear to be living longer than kids in any other trial. Just less than 50% of the population is positive for HLA-A2 in their blood. We hope the sample sent to Pittsburgh this morning shows Brooke is positive.

If she is not, we will follow the COG (Childrens Oncology Group) trial. which is RT with a chemo drug called Vorinostat. Vorinostat and Avastin are the only drugs that these kids are tolerating fairly well. Of the 24 trials open to DIPG candidates, probably 20 are using experimental chemotherapy drugs. All of which can get quite scary as I research them. I believe some are causing more issues for these kids than they are helping. I feel comfortable proceeding with the two I have mentioned. Any others would have to be explored. We may end up at Children Hospital in Philadelphia (CHOP) if that is the case. MSKCC does not offer the Vorinostat trial.

Either way, we know that we will be at the best possible facilities we can find. Both have experience with children with DIPG’s and people fly from all over the world to attend these centers.

So as I wait for my 3:00 call, I am setting up simulations for RT at MSKCC and CHOP.

Oh, 1 more thing, Brooke wants to go to the movies. Stef can’t find any children’s movies playing anywhere except one in Westfield that we never heard of. Anyone know about Wreck it Ralph? If anyone knows a movie or place, let us know!

Steve

Sunday at home


Written Jan 27, 2013 4:53pm
Hi everyone, (I know there are a lot of you reading this!)

We had a Great day today.

Brooke literally ran into our room this morning when she woke up. It was so great to be home. Brooke was STARVING so Steve got right up and made her breakfast. Me, Bryn and Ashton watched some TV in bed for a while longer. When we came down I started making them their breakfast and Brooke wanted to eat again! ( we will be discussing and researching her diet and nutrition but for now, when she is hungry, I am feeding her.)
After breakfast we went up to her room and started on some crafts. We have gotten such great gifts and they have included some really cool crafts and projects, which she and Ashton love.

Brooke is doing great. I can’t believe that we were in the hospital yesterday and she had brain surgery. She looked great and acted just great today. I think she really enjoyed herself. I have left her side for about 4 hours since last Monday. Besides that, we are always together, so she is clinging to me more then she ever has. Which is ok with me. I hope to have her a little more independent again so she can continue with activities that she had always enjoyed, without looking around for mommy.

We worked a lot on making our own paper doll clothes. She really had fun with that. I posted some pictures on Facebook of her doing them. She also painted and did some scratch art and hung around with her grandma and aunt.

We have a busy week coming up. We need to finalize a treatment plan and get it started. this is just the beginning of this journey for our family and we will be in this 100% for Brooke. Day by day is still how I’m taking it. I am cherishing every minute with her, believe me.

Thanks to John Costa and the Madison Takedown club for buying the T Shirts for the Madison / Whippany match and the socks for the wrestlers. How cute is this – the Madison wrestlers now wear socks that say Brooke down the sides of them. I have to admit, that Brooke has received a lot of stuff recently, but when she saw socks with her name on them and heard the team was wearing them, well, her little smile got pretty big!

Thanks everyone, for everything. Stick with us, like you are, and God willing we will all be ok.

Stef

Brooke comes home
Written Jan 26, 2013 8:36pm
Before I start there are two good articles to check out.
Alternative Press and Independent Press

Brooke is thrilled to be home. She is extremely tired and needs her rest. This poor kid has ben dragged in and out of hospitals and doctors offices for two weeks, getting poked and pricked with needles, under sedation three times, and we haven’t even started treatment yet.

There are so many people we need to thank that I don’t know where to start and I know we will be leaving out many.

Ok…so first all our friends and family, including our new extended family which includes anyone who reads these posts, thinks about us, prays for us, texts us, creates posts, and sends us well wishes even if it is in their thoughts. All of your support is well received and appreciated. Its amazing how this keeps spreading beyond our immediate community.

More specifically, Barbie and the gang of 10 girls who have spearheaded the fundraising efforts as well as this website. Laura, for her Heartworksconnection to take donations that go directly toward Brooke and her treatment.

Everyone who has brought food or signed up for the meal train. The countless donations, gifts, and cards everyone has sent/brought.

Michelle Davis who purchased rubber wrist bands to sell for fund raising, among many other behind the scene things she and her family do for our family. Sam Davis, who slept here and watched Ashton and Bryn the past two nights because Lis (our Au pair) was violently ill and could not get out of bed. Lis has been amazing as well. Courtney has been there to help Sam most of the time.

Joanne Peotter for remaining a compassionate family friend, not only willing to do whatever we need, but showing up and making sure we will have what we will need. Her experience of losing our friend Tim to cancer not to long ago brought on heart felt compassion we will never forget.

The Delbarton wrestling team, parents, and supporters filled our home with presents for all of our children the night before Brooke had her surgery. It was like christmas all over again and the kids minds as well as ours were in another place for that time.

New Providence, Whippany Park, Madison, and Roselle Park wrestling teams and fans all sold gray T-shirts supporting Brooke that many of you wore on Friday. John Ranieri and the Roselle Park boosters donated the shirts for the cause. Kevin Carroll who has been relaying items for me back and forth to school and home. He also delivered the Delbarton Christmas and funds raised by Madison and Whippanny Park.

Michele and Joe Stivalo for driving us to and from Brooke’s surgery as well as being there for us every step of the way. Joe and Caryn Elefante for getting us meals and making sure they can do whatever it takes to make Brooke comfortable despite having their own issues they are currently dealing with.

Robert Elefante for driving us to Sloan and CHOP and doing relentless research to help us make the most educated decisions we are faced with. I know I feel like I have been doing 60 hours a week worth of research and he is always a couple steps ahead of me. It is great to be able collaborate with him and come up with statagies.

Brian Donnolly, who is the brother of Pat Donnelly (Madison teacher) and daughter Juliana shares the same diagnosis as Brooke. He has been a tremendous resource and well researched himself. I have been to meetings with neuro oncologists and neurosurgeons only to have the nurse practitioner tell me Brian is almost as knowledgeable as the doctors themselves.

Katie Cancro for being there for us at a moments notice and taking Ashton to play dates and such with her daughter Katherine. Who by the way is Ashton’s girlfriend. Yeah they are 5 and 6 year olds, but they have been together for 2 years now (REALLY, NOT A JOKE).

Sundance School and teachers who welcomed us on our visit and have been so supportive.

Sean and Sandy Castle for being great friends and here for us. Also Sandy and Amy Smith (McCrann) for getting the supplies to create our notebook to stay organized at all these appointments.

The New Providence Presbyterian Church for making prayer cards with Brooke’s picture and holding many prayer sessions.

Larry Leightner, Julie Spoerl, and Amy Reiling for sharing their 1st hand stories, connections, and advice about their afflicted love ones. Lori Castle got me in touch with Larry, who in turn got me in touch with a German doctor I shared email correspondence with.

Jackie Calabrese for getting me in touch with her uncle in Washington DC. He is a neurosurgeon and uploaded Brooke’s films and spoke with me on the phone about her specific situation.

Last (for now or what I remember off the top of my head) but certainly not least the decorating commitee. If you look at the picture attached to this post, it is our front lawn completely covered with balloons and signs welcoming Brooke home. Laura came up with the idea and had the Heartworks kids make signs. Laura, Jamie and kids, Becky, Tracy, Kristen, and Mike Mitchell and kids all helped decorate our lawn. BROOKE WAS SO EXCITED!

I know I missed so many and I am sorry. I am sure I will wake up several times tonight as one of you pop into my head.

So much support in two short weeks. We are eternally grateful you are all here as we progress through this journey.

Thanks for being a part of TEAM BROOKE!

Steve

WHAT A DAY
Written Jan 25, 2013 8:34pm
It was a tough enough decision to go ahead with the surgery against the advice of many doctors and with the advice of doctors we had the most faith in. But to carry out the decision was pure torture. Not knowing if my baby would ever walk again or have some other kind of ailment or even worse because of our decision to move forward was the most gut wrenching experience I have fathomed in my life. From the time we entered the hospital to the time the surgeon came to talk with us, I was contemplating running in the MR room or OR and putting a stop to this madness. Although I never let on to stef or her sister, I think we all had the same thoughts.

I am so thankful I will be able to play and be a part of Brooke’s life after this day. Everyone can say they would have made the same decision, and many of you probably would, but to walk in these shoes today, was an experience I wish on no one.

If the experience was not bad enough, as we were getting walked to the recovery room after speaking with the surgeon (knowing Brooke was either getting wheeled there just before or immediately following us), an individual was getting wheeled down the hall just behind us. All of a sudden alarms start blaring, nurses start running down the hall yelling we have a code BOD (or something like that). Screams to get the crash cart and more people running and shouting. Our hearts were in our throats. I moved closer to the gurney to see if it was Brooke. But the doctors and nurses were blocking my view and looking back at me as if I were just an innocent bystander. I couldn’t see who was on that gurney. I walked over to Stef and her sister and was immediately asked by Stef; was that Brooke? I had no idea, but answered no, it was some older guy. The look in both of their faces told they knew I was lying. Soon after they wheeled the gurney past us and in fact it was an older gentleman. In the echoes of “get the incubator”, “we need a crash cart”, I was relieved it was not Brooke on that stretcher. I have no idea what happened to that poor man, and thought about him throughout the day. Even felt a little guilty as the day progressed. Later on Stef and Michele informed me of what a bad liar I was.

So today was a huge milestone and an even bigger sigh of relief, but it is a tiny obstacle compared to what we face moving forward. If we want a miracle, one would certainly be this diagnosis from this biopsy come back as something other than a high grade Glioma. I hope there is not a lull in the prayers and support over the next few days. That would truly be a miracle. If that is not possible, our next miracle request would be that we beat this thing head on. We have some plans in place to start a path of treatment whatever the outcome. It would be a MUCH easier road if it were not a high grade Glioma.

Anyway, we have a long road ahead and need you guys to continue to rally behind us. We should have results in the next 3-4 days.

Once Brooke ate something, she perked right up. She looks great. My little warrior. She doesn’t even know what she is fighting.

THANK YOU, THANK YOU, THANK YOU, for all your support and prayers. It really helps……but keep it coming!

Steve

Today
Written Jan 25, 2013 1:33pm
I am doing the best I can, but this medical stuff is really hard for me, my stomach is in a knot and I feel like I might pass out.
Steve had to do the ct scan with her, I had to leave the room.
Brooke is doing good. She is cranky. I think anyone would be. She is flushed and really tired but she is also talking to me about how we can go to the movies (and get treats to eat there) and to Build a Bear and pottery painting.
You have no idea how you all helped this morning, I swear I felt all the prayers and thoughts. We are still going to need them. Hopefully all goes well the rest of today and we can come home tomorrow, and we have a long road ahead of us, but we are not alone. Brooke is not alone !!!

Stef

Starting to calm down.

Written Jan 25, 2013 1:29pm
Catscan ALL CLEAR!

THAT’S MY GIRL

Written Jan 25, 2013 11:19am
Brooke woke up and pushed the nurse out of the way and said she wants to go home. They need to do a catscan later today to confirm no complication or bleeding. She is resting with Stef right now. More than likely we will be going home tomorrow.

WHEW

Steve

Spoke with surgeon
Written Jan 25, 2013 10:46am
He said everything went as planned. She is still under sedation and should be waking up in about 20 minutes. We will meet her then and then they will confirm everything is all right as far as the procedure causing any effects. He believes everything will be fine.

Steve

Still Waiting
Written Jan 25, 2013 9:16am
The MR and mapping lasted until 8:30. We were just told at 8:45 it would be about 2 to 2 1/2 hours until she is out of surgery.

Steve

Stef weighs in
Written Jan 24, 2013 5:14pm
OMG I can’t believe what we are doing tomorrow. The best way to sum this up is,:
-Am I comfortable with the decision ?
-I will never be “comfortable” again. However, I am confident and I do feel that this is the right thing to do,
I am telling you, you can’t imagine how we feel. It is definitely surreal. Taking it hour by hour now, and soon I am sure I will be taking it minute by minute, and then literally just trying to get my feet to step one in front of the other.
Please pray for us, or send good thoughts, whatever you can do. Send me a text, a post, something.
Right now, Ashton And Brooke are at the gym with Lis, and Brooke is home with me and my sister. Steve is driving home from CHOP with Uncle Robert, essentially completing our search for as much info as possible to make this decision. Today has been a roller coaster.
Brooke has been really tired today, and all we really did was snuggle and watch tv.
My parents came over for lunch and that was good. My cousins also came over and Brooke enjoyed watching the “little” ones (her sister and cousin Gwyn) play.
Our friends Sandy and Sean are bringing over strawberry ice cream (too bad Zita’s is closed for the winter) and then we will give Brooke a bath and try to get Brooke to get some sleep.

WEAR GREY FOR BROOKE ON FRIDAY!
Written Jan 24, 2013 11:59am
For those of you that have a “I wear grey for Brooke Healey and brain tumor awareness” t-shirt, please consider wearing yours tomorrow to show extra support for Brooke as she undergoes her biopsy. If you don’t have a t-shirt yet, you’ll get one soon, but PLEASE….WEAR GREY FOR BROOKE!
Another great way to show our support and encouragement for the family tomorrow and going forward.
Let’s make Friday’s “WEAR GREY FOR BROOKE” day!

Fundraising!
Written Jan 24, 2013 8:53am
Fundraising for Brookie is in full swing! A bunch of us attended the NP/Roselle Park Wrestling match at NPHS last night and sold out of our t-shirts! People were so generous and made extra donations as well. It’s so nice to see a community come together at a time like this.
Many of you have been asking about how and where to purchase a t-shirt. We are in process of ordering more and I will be posting a later update on where you can purchase one. So, please stay tuned. We will have both child and adult sizes to sell.
There are also two sellers on Etsy.com donating the proceeds of the sale of their products to the Brooke Healey fund via Heartworks. Please visit their pages below to see and purchase their products!
Kelley Masterson (one of Ashton’s former teachers at Sundance)
Butterflies for Brooke – www.etsy.com/kelleymarie131
Maureen Paradise Mallon (Carrie Paradise Sachsel’s mother)
Healey Healing Heart – http://www.etsy.com/listing/121432513/brooke-healey-healing-heart-5-x-7?utm_source=OpenGraph&utm_medium=PageTools&utm_campaign=Share&fb_action_ids=4826610556230&fb_action_types=og.likes&fb_ref=like_button&fb_source=other_multiline&action_object_map={%224826610556230%22%3A153662284784453}&action_type_map={%224826610556230%22%3A%22og.likes%22}&action_ref_map={%224826610556230%22%3A%22like_button%22}
If you’d like to make a monetary donation of which 100% (minus a 2% paypal fee) will go to the fund set up through Heartworks for Brooke please DONATE HERE:
www.njheartworks.org – click on donation and in the specials instructions section at the end, please put Brooke Healey.
I will continue to update the site with additional fundraising efforts….we have a lot in the works and many people offering their help. On behalf of myself, the rest of the fundraising committee and the Healey Family, THANK YOU! A special thank you to John Raneiri for the t-shirts! If anyone has any questions in the meantime, please email me at bbratz@optonline.net.
Team Brooke!
Let the prayers continue…

Wednesday
Written Jan 23, 2013 1:58pm
Brooke is having a good day today, although she is pretty tired. She is so cute. She just told me her brain is picturing a slice of pizza, and a slice of cake.
Who knows what she hears us say.

I am not someone who likes to ask for things, disrupt people or anything like that. That has kind of changed though because of Brooke. For example, we just went to Sundance school today. She attended there for two years. We totally disrupted their day. You wouldn’t know it though, because everyone was so happy to see us. Brooke played and saw a lot of her old teachers. She saw Ms Bunny and was so happy. Katie Cancro set that up for us and we went around with her, and her beautiful daughter, who just happens to be my son’s girlfirend. They are in a three year committed relationship. (you think i’m kidding). Katie has also offered her house up on Friday morning as a meeting place for people who want to get together and send us positive thoughts.

Her current teachers from NPPC came here on Monday too. She had the BEST time. Mrs Lawler and Mrs Shanahan did crafts and play dough. Brooke was thrilled. She adores them too.

We will be going for a doctors visit at 330 to her pediatrician, Dr Kemeny, who I have to thank for catching this right away. She is a wonderful doctor.

Also, I need to just mention Barbie has been doing so much. She is pregnant with a family of her own. I get a sick feeling thinking about how much time she is devoting to this. I know that there are a lot of friends involved in all of this. I am not going to start listing names yet though. Tonight she will be selling T SHirts at NPHS thanks to the Roselle Park and NP wrestling communities.

We are also being supported so much by the Davis Family and all of Madison.

I read a blog from a friend about being from New Providence. She was right on. Maybe you will get a chance to read it. If you are from NP, you know it’s true. If you have to go through this, for whatever F’d up reason, at least we have support.

Yesterday My Uncle Robert came with us to our DR appt. He has been researching like crazy with Steve. People have always mentioned that we were kind of alike in some ways, and I have always felt extra close with him. Now I know why. (and this isn’t even about business)

Friday is Going to be tough. I don’t even know what to say about it. I will do my best. I STARED at the DR when I asked him if she was going to be safe. I did more then stare. He stared back ( it was more then stare, I can’t describe it) and he said she would be.

PLEASE pray for us on Friday morning. Send me texts, posts, etc.

I asked the DR if he could medicate the parents, he chuckled and said, “as need be, but you won’t believe how strong you will be. ” Sounds like a good doctor, right? I just hope he is right.

Again, I don’t want to start naming people to thank too much, because there are too many. Sometimes I might start mentioning a name though I think, like I did above. If I don’t mention you, it’s not that I am not thankful. From what I know of what so many are doing, and what I don’t even know about, THANK YOU ALL. Just need to add my family and Lis, our au pair….
Next post will be all about Brooke. Just had to get some of this out!
Sign My Guestbook | Read Tributes

Friday
Written Jan 23, 2013 10:16am
By now I’m sure you’ve all seen Steve’s latest post about their decision to move forward with a biopsy on Friday. I know Stef and Steve have the weight of the world on their shoulders right now but they also know how much love and support they have from family, friends, acquaintances and even complete strangers. Friday our prayers need to be extra strong and in abundance for Brookie! She will beat this thing with everyone’s continued support.
Katie Cancro has offered to open her home beginning at 8:30am on Friday to anyone that would like to gather to be together, pray, comfort each other and send a big gust of positive thoughts to the family! Kids are welcome too. Katie’s address is:
 Katie Cancro
 107 Governor Drive
 Basking Ridge, NJ
Also, as a friendly reminder, please visit the Heartworks Organization website at www.njheartworks.org to make a donation that will go directly to the family. I also posted instructions in an earlier update on where a check can be sent instead. If you need instructions on that, please visit the earlier post or feel free to email me at bbratz@optonline.net.
Lastly, we will be selling t-shirts at the New Providence/Roselle Park wrestling match tonight that say “I wear grey for Brooke Healey and brain tumor awareness”. All proceeds will go to the fund set up through Heartworks for Brooke’s care. Please come out and support us!

Team Brooke!

THE DECISION
Written Jan 22, 2013 6:00pm
We met with Dr. Souweidane and are comfortable with our decision to go ahead with the Biopsy this Friday morning. Although these next few days will be rough knowing my baby will undergo brain surgery, I am confident everything will be fine and this is the best decision we can make at this time.

Stef is on board but extremely nervous at the thought of this procedure.

Again, there are some atypical characteristics with this particular tumor. That is enough to raise some questions about wanting to find out more at the advice of the neurosurgeon and neuro oncologist . If we (Brooke) are extremely lucky, maybe we can find out this is a grade I DIPG. Although rare, It has happened before. There is also a very small chance that it may be another cancer all together (which would be good).

To keep this in perspective, the chances of either may be less than 1%. BUT, even if we get confirmation of the diagnosis, we will know more about the cell structure and make up this particular tumor, which may help guide us in future steps to take in this fight.

TIMELINE
Friday 3am head to Cornell Medical Center
Friday 5:30am begin check in and pre-op
Friday 6:00am pre-op procedures begin including a MR scan to map out the route and navigate the path of the needle.
Friday 7:30am Procedure begins
Friday 9:00-9:30ish am We meet Brooke in recovery
Friday 10:00 or so am Brooke is moved to Pediatric ICU
Saturday all day Recovery in Pediatric ICU
Saturday evening WE BRING HER HOME!
Sunday Rest, no visitors except immediate family

I know you are all pulling for us…we feel the energy.

Help us through this milestone on Friday!

P.S. Most importantly, Brooke is playing with her brother and cousin as I write this. She is laughing and having a good time. When I asked her earlier today what would she want to do with Daddy. Anything she wanted, we could go anywhere she wants….. Her response. “Daddy I want you take me to wrestling practice.” Now if I can only get Ashton to say that…ugh

Thanks,

Steve

Katie’s message
Written Jan 22, 2013 11:46am
This message was sent to me by Katie Cancro, a friend of the Healey’s. I think this is a beautiful message that should be shared with everyone. There is a fork in this road for them and I believe they will find it.

Miracle Way

Only knowing Brooke 2 of her 4 years it was clear to me right from day one that she was a Princess.
As sweet and accepting as Snow White
As courageous and determined as Rapunzel
As loving and humble as Cinderella
And as strong and brave as Merida.
Amazing qualities that can’t be taught. They were within the design of Brooke. These are qualities we all wish we had and she was naturally blessed with them. A true Princess.
As mom said “She is special, always has been”. She was a miracle and still is.
Let’s face it; her last name is Healey for a reason. HEALey. She has the makings to heal. Heal a bad day, heal a sad day and now she has the challenge of healing this day.
Brooke and her family have been placed on a road that has devastation at the end. But we all know every road has a fork in it. Sometimes they are hidden but they are still there. This road that they are on has a fork somewhere. We need to help them find it. This fork in the road will put them on another path. This is called Miracle Way. This might be the direction of the right Dr., more options, time and blessings that heal. Miracle Way is where they need to be. It might be a long journey but they need to know we will all be behind them to give them a push. In front of them to pull them along and pick them up and carry them if need be. So let’s all set our GPS in our hearts to the destination of Miracle Way. Sending all our positive thoughts, energy and of course prayers to help guide them and support them.
May Steve and Stef hold each other tight and the love that createdthis little Princess be the love that will guide them to Miracle Way. So let’s tell all our Angels that we each have looking down on us and protecting us that we are good for now and they can all go to be with Brooke and her family. Surround them, love them, guide them and protect them while they travel down the path of Miracle Way.
A loving friend.

We are all praying that they find the fork to Miracle Way!

Donations and the Final Surge
Written Jan 21, 2013 9:59pm
If you have donated to the Heartworks fund at njheartworks.org, thank you.Those monies will go directly to the care of Brooke. There is a post below in the Journal History under FUNDRAISING FOR BROOKE that explains how to do so.

If you have donated to the Caringbridge site using the button on the right, it is a very nice gesture, but none of those monies will go toward Brooke’s expenses or treatment. Those donations go directly to company that runs this site.

Tomorrow is the day we expect to get the rest of the answers we need to proceed and select the proper course of action. The pediatric neurosurgeon at Sloan we are meeting is excellent and has developed one of the most recent trials available for this type of tumor. His name is Doctor Mark Souweidane, and if you visit clinicaltrials.gov and search DIPG you will find his trial under #15. His associate, Dr. Ira Dunkel is a pediatric oncologist and we have already met with him and discussed our case.

Dr. Souweidane is going to advise us if he feels we need a Biopsy at this time. A Biopsy is in fact Brain Surgery. Although this is very risky, Dr. Souweidane feels confident that he can pull it off. He claims to be 100% successful with these types of Biopsy’s. Remember this is not surgery to remove the tumor (which I wrote in an earlier post was 0% successful). If he feels this is necessary AND WE AGREE, this could happen as early as Wednesday or Thursday. If not, we expect to start Radiation Therapy by the end of this week or beginning of next. Furthermore, if we do feel a Biopsy is necessary, Brooke would still start Radiation Therapy next week.

A Biopsy would determine the grade of the tumor. If we are extremely lucky we could learn it is a grade I or a different cancer altogether; most of these tumors are usually grade II through IV. Can you believe we are praying for a different cancer? We could also learn a “better” method to attack this thing. There are some atypical characteristics about this tumor that could be explained with the Biopsy as well. I think if it were not so atypical, the doctor probably wouldn’t recommend the Biopsy, but we will find that out tomorrow. A Biopsy, if large enough, may also allow us to create a designer vaccine to try and fight this monster. You can read about that in some of the other trials on that web site listed above.

Big decisions tomorrow. Wish us luck and keep praying.

We are overwhelmed by all the support and encouraging words we are receiving. Thank you

I will try to post an update tomorrow night.

Steve

At home today
Written Jan 21, 2013 12:28pm
So two of Brooke’s teachers came for a visit today. She was so excited, they did a couple of crafts and had a great time. Brooke got tired out by the end, so we said goodbye, and she had some chicken noodle soup for lunch.
Tomorrow we are going to MSK (Memoral Sloan Kettering) and should have some more information about what our daily schedule will look like.
I hope that she will have time between treatments to keep seeing the visitors, and also to do stuff as a family. We just received a great gift card this morning to Color Me Mine, a pottery painting place. Hopefully our days will include not only doctors, but fun stuff as well.
You can’t imagine what we are going through, I couldn’t have if I heard about this happening to someone else. I can barely still imagine this happening to us now. But, I am going to keep my head up, the best I can, and keep moving. I have to. I am sure there will be moments when I can’t.
Your support helps. Please keep it coming. The posts, texts, visits, cards, everything.
Please keep us in your thoughts tomorrow as we will probably have to make some big decisions, medically. Maybe Steve will post more about that later. The medical stuff is kind of my weakness. I don’t really feel like writing about it. I promise you that I am paying attention to it though and doing what I need to make the right decisions. Steve is more on top of that though, along with another family member who is helping us, as well as another father Steve is in contact with whose daughter has the same diagnosis.
We all had a great time at a friends house for dinner. Ashton acted like a crazy boy and Bryn played with another little doll of a girl. Me and Steve also had a good time. (I will also mention here that I tend to type too fast and make typos all the time. Just an FYI )
Hopefully Brooke will rest now and maybe go get her nails done later on.
I don’t want to start mentioning individuals names yet who are really helping us out. I’m not ready to, but you know who you are. If I start listing names I am going to start crying and I can’t do that because I feel like I will never stop. (by the way, if you are even reading this you are helping us out).
I know that we are the ones dealing with this the most and ultimately this SUCKS for us WAY more then for anyone else. But I also know that there are other family members and friends who are going to have a hard time.

I am not planning on doing anything at work for a long time. Maybe I will one day, maybe I won’t. So, if you go to our store or you are an employee, just bear with us. We have great people there. You might wonder why I am even writing that. I don’t even know. It’s what I did everyday before this. It is a big part of our family identity. Also, I know my family is there right now, and they have to deal with all of this, plus go to work, and do my job too. I know people at work are also helping too. They probably dont know what that means to me. Hopefully it keeps their minds off of this momentarily.

Thanks, Stef

Fundraising for Brooke
Written Jan 21, 2013 8:13am
Hi Everyone –
We’ve begun our fundraising efforts and are meeting regularly to plan a special night in honor of Brooke. Please stay tuned for more details. We are looking for donations to hold a raffle. We’ve already secured some great donations. If anyone has anything they’d like to donate (tickets to a sporting event, a weekend at a vacation home, etc…just some ideas) for the evening that we can raffle off to raise money, please email me atbbratz@optonline.net.
Additionally, we posted to the My Story section but we still see that donations are being sent to Caring Bridge. Caring Bridge is a wonderful organization that allows us to keep everyone updated on Brooke’s condition, treatment and spirits during this time. However, all donations that are sent to Caring Bridge go directly to the site to keep it running. We have set up a fund through the Heartworks Organization, a 510c-3 organization in Brooke’s name. 100% of the donations raised will go directly to the family. You can donate on the Heartworks website at www.njheartworks.org, click on donate and be sure to enter Brooke’s name in the note’s section so that your donation goes into the right fund. If you’d rather send a check, you can make the check out to Heartworks Organization and be sure to put Brooke’s name in the memo section of your check. Checks can be sent to either:
Heartworks Organization
19 Route 202
Basking Ridge, NJ 07920
OR
Laura Hartnett
58 Seney Drive
Bernardsville, NJ 07924
All of your donations are VERY MUCH appreciated. So many people want to help the family and at a time like this, donations are the only way. Donations and words of encouragement and love.
I will continue to update everyone on our fundraising efforts as we secure a venue and date.
If anyone has any questions, please feel free to email me atbbratz@optonline.net.
As always, keep Brookie and all of the Healey/Elefante families in your prayers.
Team Brooke!!!!
Barbie
Brooke FingerThis is what Brooke thinks of her tumor!
Written Jan 20, 2013 4:55pm

Greg and I were lucky enough to spend some time with Stef, Steve and the kids today. Brooke was having fun with Ashton and Brynn and eating Munchkins!
Steve took this picture over the summer when Brooke was trying to show him her boo-boo but he’s decided the new caption should be..
“THIS IS WHAT BROOKE THINKS OF HER TUMOR!”
I agree!
Barbie

Sunday Morning
Written Jan 20, 2013 8:42am
Day 2 without any planned Doctor’s visits. I think it is good Stef was able to read through all of your posts and make a post of her own last night.

Brooke woke up bright and early with a smile on her face and ran into our room shouting “Its a sunny day!”. The steroids must be working because I don’t see any symptoms at this time. She is as normal as normal can be at this time.

Last night she played at her cousin Rose’s Birthday party with all the kids. She had so much fun and was smiling the whole time. Her favorite part was the balance beam. She told me that she was pretty good at that one.

Today she will attend a puppet show at noon and have breakfast with Stef’s cousin Leenie and her fiance Dave. The rest of the afternoon will be open (after her nap). She gets tired out pretty quick toward the end of the day so a nap is essential.

Maybe I can convince her she wants to watch football with Daddy the rest of the afternoon. Ummm, Doubt it. Looks like I will be playing with dollies during the games.

Steve

My Girl Brooke
Written Jan 19, 2013 9:43pm
We have been overwhelmed in more ways then one over the past six days, both with the most devastating news a parent can get, and with love and support from our family and friends.
This will be the hardest thing we ever do, and Brookie will have a long road ahead of her. So will her siblings, grandparents, aunts, uncles and cousins.
There is no way we can do it without your support and prayers,
I just read through every entry you have written to us. I smiled, cried, and felt like my heart was going to break. But most of all, it will give me a little more strength tomorrow, which I will need for my family,
I check my phone whenever I can. Every text I get pushes me forward. Everytime Steve is on the phone with one of you, it pushes us forward.
There is NO reason that Brooke can’t be the miracle. It was caught early, the tumor may be a little atypical, she might be on the young side for this diagnosis, and, I don’t care, I will just say it, she is special. She always has been. She is so smart and cute and little and funny and loving. She will be the one. We will be strong for her and Ashton and Bryn.
If you see me or talk to me, and don’t know what to say, I get it. I DON’T know what to say either. What can I possibly say.
All I know is that the words, posts, texts, calls, food, cards, posters, visits, gifts, and ALL the support helps,
Anyhow, I could ramble on about Brooke and everything, but I will save that for the next post.
In the mean time, please pass this site to everyone you know to raise awareness for Brooke and for this diagnosis in general.
Thank you so much for caring and pray for Brooke.

DAD FOLLOW UP
Written Jan 19, 2013 3:31pm
I know that last message was a bit harsh and to the point, but those are the facts and statistics we face at this time.

On a much brighter note, I will be bringing Brooke to her cousin Rose’s Birthday party in about a 1/2 hour. She loves being home and playing with her brother and sister. They all just had a bath together and were splashing and playing and having fun.

We will be home and Doctor free until Tuesday. At that Doctors appointment, we will decide if we will need the Biopsy or go straight into radiation.

Brooke is doing great today. It is the best she has looked and walked since being admitted to the hospital on Monday. She is on a steroid that reduces the swelling around the tumor and temporarily relieves the symptoms.

If you plan on visiting Brooke, please call in advance. Please no sick kids, but she would love to play and have fun with kids her age.

If anyone can pull this off, we all know it is my little Brookie!

MESSAGE FROM DAD
Written Jan 19, 2013 1:54pm
Thank You for all the support we have received thus far. I have read every entry (although very difficult to do). Stef wanted me to express although she can’t bring herself to read any messages yet, she intends on reading each and every one.

OK, here is what we have learned. Brooke has been diagnosed with a DIPG (Diffuse Intrinsic Pontine Giloma). This has been confirmed with a CT scan as well as an MR scan by 6 different neuro oncologists and 7 different pediatric neuro surgeons. If you google it, you learn this is the most horrific brain tumor anyone could have. Yeah, I did my best to find someone to disagree, but that wasn’t happening.

Since this is different than any other type of brain tumor it is in fact inoperable. You may have heard stories about the guy who was told it was inoperable and finally found a doctor who would operate and saved his life. Unfortunately, that scenario doesn’t work here. The pons sack, located at the brain stem controls all vital organs and even consciousness. A DIPG is in the pons sack. In every attempt to operate and remove all or part of the tumor, there has been 0% that have survived the surgery. The only exception is a biopsy of the tumor, which is extremely risky. The slightest movement of the needle could touch the inside of the pons and shut down the heart, other organs, or even shut consciousness permanently.

The DIPG itself has a 98% fatality rate. The 2%, that we are hanging on to by a thread, is believed to be either misdiagnosed or a lower grade Glioma by many professionals.

We are faced with a question of getting a Biopsy, which if we do, we have the best surgeon in the country at Sloan Kettering in NYC, or accepting the diagnosis.

Either way, we have to proceed with radiation. Radiation will shrink the tumor and keep it in check for 6-8-10-12 months or hopefully longer. Once it starts growing again, there is now way to stop it. There are several trials being conducted currently, none of which have any success to date.

I will get into other options (trials) that we will try after the 8 months is up after radiation in a later update. It is too much to go through right now.

We need all your hopes and prayers. Either this tumor can be a lower grade Glioma, putting us in that 2% or that science and technology have major breakthroughs in the next year or so.

THANKS AND KEEP BROOKE IN YOUR THOUGHTS!
Written Jan 18, 2013 9:25pm
Hi Everyone –
As I mentioned in one of my earlier posts the words of encouragement and support that you’re all posting and sending are being read by Stef and Steve. They are overwhelmed by it all. Knowing that they have all of this support helps to keep them going during such a difficult time.
Brooke was finally able to go home last night for the first time and has been having fun playing with Ashton and Brynn. She made her own pizza and chocolate chip cookies tonight too! During all of this, she has remained a trooper and even had fun beading in the playroom at Sloan Kettering…they had a hard time getting her to leave! I know you’ll all agree that it’s so nice to hear that her fun-loving spirit, positive attitude and bright smile are going strong!
Stefani and Steve have spent the past few days going back and forth to see numerous doctors with Brooke in NYC. Steve has also spoken to Neurologists in Washington State and Boston…even scanning Brooke’s films to them for review during their conversations. A lot of these meeting and conversations were made possible by many of you reaching out to friends of friends and sending them information they may not otherwise have had a chance to see. Again, they thank everyone for all of your help and love.
They have learned so much over the past few days about Brooke’s diagnosis. Luckily they will get to spend the weekend at home where Brooke can continue to play with her brother and sister and have fun the way a 4 year old should. They have another appointment at Sloan Kettering on Tuesday after which they will make some decisions on the best course of action for Brooke.
This has been overwhelming to say the least but having the community of us all behind them will continue to help get them through this. I will continue to update this site as often as I can with news. In the meantime, as always….pray for Brooke and the entire Healey family.
Barbie

Written Jan 18, 2013 1:23pm
For those of you interested in helping the Healey family in some way please feel free to join the Mealtrain Stefani’s friends have started. You can sign in using the link below, choose a date to bring them a meal and can see what others are bringing to avoid duplicates.
If you have any questions on this, feel free to email me.
• http://www.mealtrain.com/view/?id=%2bHLt9urpus8%3d
Thank you!
Barbie

Support
Written Jan 18, 2013 11:29am
Hi everyone-

Stefani and Steve have been busy going back and forth to NYC over the past few days, learning as much as they can and continuing to search for an answer for Brooke. They are looking into different studies which I’ll share more about once they have some answers.

In the meantime, the outpouring of love and support they’ve received is truly amazing. They are reading everyone’s messages on here, via text, email, etc. Please continue sending love, support, prayers and messages to them! They are so thankful for all of the love. There are too many people to thank individually but please know that they appreciate everything and are overwhelmed by all of the support.

Brooke deserves our prayers! Lets keep them coming!

Barbie

Update
Written Jan 16, 2013 2:40pm
Hi All –
On behalf of the Healey family, THANK YOU for all of the prayers and support. Please continue to send your well wishes to the family by texting them or visiting this page. The message I posted yesterday was not intended to make people stop texting them altogether. They were getting a lot of information/advice from people so the request was simply to hold off on those for now and only send words of encouragement and hope. They appreciate ALL of the messages they’ve received so far…it definitely helps them knowing that so many people care so much about them. Sometimes words are misinterpreted so I apologize for that but please continue to text them with your well wishes!
Thankfully, with the help of some wonderful people they have appointments at NYU, Columbia Presbyterian and possibly Sloan Kettering and CHOP. They are confident in their current team but feel obligated to explore all options.
Brooke is a special little girl and miracles happen for special people…so as Stefani said, “why not her?”.
Keep the prayers coming!
Barbie

Brooke’s initial diagnosis…
Written Jan 15, 2013 12:40pm
Hello Family and Friends –
I am writing this on behalf of Stefani and Steve as they are with Brooke at Morristown Memorial now and are focused on her care and learning as much as they can about her diagnosis. They’ve asked me to create this page to inform everyone. Please understand that this is all new information and some of it may be slightly inaccurate but I’ll do my besk to explain what I know.
Brooke was experiencing shaking in her hands and a limp when she walked. They brought her to the ER last night (1/14/13) and after a CT scan learned that she has a mass on her brain. They’ve since learned that this tumor, called a Pontine Glioma is on her PONS, an area of the brain stem that controls the heart, breathing, digestive system, etc. They have been told that this is inoperable. They will be starting radiation and have already started steroids. The radiation will hopefully shrink the tumor however, after she’s been given all of the radiation she can handle, it will likely grow back.
They have made an appointment at NYU for a second opinion. Please pray that they get better news.
All of you know what a special, beautiful little girl Brooke is. She brings a smile to everyone who knows her. Please continue to pray for her and for the entire Healey family.
If anyone wants to send information to me instead of Stef and Steve (as I mentioned in the “My Story” section of this page, please don’t send anymore information to them via text. The doctors they are working with at Morristown are networked with NYU, CHOP and St. Jude’s. They are getting the same information from all sources regarding this very rare diagnosis.), please feel free to do so at bbratz@optonline.net.
Thank you,

Barbie

css.php