THE BEGINNING OF OUR STORY
This journal was written in real time during Brooke's battle with DIPG. It was posted, on the website CaringBridge, which allows people to stay connected to family and friends throughout a health journey. It was an invaluable tool at the time, allowing the Healey family to communicate in one place to all who cared.
No one then could have imagined what has brought us to our mission today. We never want another family to have to go through what's documented in this story. We pledge to fight in Brooke's honor: CARING 'TIL IT'S CURED
January 15th, 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 email@example.com.
January 16th, 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!
January 18th, 2013 (11:29am)
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!
January 18th, 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.
January 19th, 2013 (1:54pm)
MESSAGE FROM DAD
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.