THE AMAZING GRAY FUND
On May 16, 2000, our little super hero, Grayson was born.
Update to August 2014
Gray had the major decompression and tumor debulking surgery in October of 2012 to take the immediate pressure off of his brain stem. The surgery was successful, his neurosurgeon was pleased with how defined the margins were and how much tumor he was able to remove. Post operatively Gray suffered two major brain hemorrhages, in the large tumor behind his eyes that encompasses his hypothalamus/pituitary gland; in and around the optic nerve area. This is his largest tumor and we have never attempted to de-bulk or remove it because it is in such a critical place. Some chemotherapy agents affect vascular integrity and it is likely that this is what happened because this particular tumor was so large and vascular. Gray had been on a chemotherapy regimen that is associated with intra-tumoral and brain hemorrhages in the six months leading up to the surgery. This is something that none of the team would have anticipated, but it quickly became a critical reality.
The brain hemorrhages sent Grayson in endocrine crisis, and his body was unable to regulate any of its fluid balance or blood pressure. As a result of trying to replace all fluids/blood supply while his body was not metabolizing anything properly he flooded his own lungs. He remained in critical condition for eight weeks and ultimately had to get a tracheostomy; a chest tube was placed to drain the fluids and he also had an external drain placed in his brain to minimize the pressure and further damage. We made the best decisions we could at the time, hoping that he would have the best outcome possible if he were to survive the severe nature of his critical condition.
The side effects of sedation and paralyzing agents used during critical times, have caused Gray has some long term gastrointestinal issues that are affecting his lung expansion and pulmonary function. It is frustrating because his lungs really improved much quicker than we had imagined in the first six months of rehabilitation. Unfortunately, his oxygen requirements have increased over the past year, so he still requires his tracheostomy and oxygen 24 hours every day. We work hard around the clock to manage his fluid balance; mineral and electrolyte balance; constantly running labs to monitor critical levels that his body cannot manage on its own due to the damage to his hypothalamus, which regulates his endocrine function.
After being sedated for months, Gray finally rose to the challenge of fighting for his life back. This has now been an almost two year journey of opening up his contracted joints, reconditioning his lungs, learning to swallow and eat again and get control of his bodily functions. He has had nearly 1000 hours of rehabilitation therapy, dynasplints on his feet and his left knee eight hours each day, cognitive therapy and a lot of very painful and challenging work to get where he is now. He is walking without a walker, and we continue to work on his stamina and manage his nerve pain while also improving his balance.
Although our insurance has covered so much of his needs, the out of pocket expense, and necessary equipment to keep him safely at home is overwhelming. We have exceeded our therapy benefits the past two years, and much of the necessary equipment is not covered by any insurance policy. At this time we are focusing on getting oxygen/capnography machine to monitor his lung function while he is home and especially while we are pushing him in physical therapy. Also, an iSTAT machine that will give us important information about mineral/electrolyte balance within minutes, which is critical to prevent seizures or fatal consequences of fluctuations.
The past eighteen months of MRI's have continued to improve, which indicates the brain hemorrhages likely severed the blood supply to the major brain tumor. We have always known that Gray would never be tumor free, but with a modified ketogenic diet and a miracle we are the most optimistic we have been since Gray was first placed on hospice care in 2011. The only place to go is Onward and Upward from here!
The Talbert Family Foundation has generously offered to match all donations during this important time to get Gray the necessary equipment to keep him home during his next stage of rehabilitation. We need your help.
beLIeVE in miracles ~
michelle and gray
Update to August 2012
Here is the update on my progress over the last ten days. Grayson is doing so-so, and we are managing his pain well at this point. I have been working diligently with our State Health Insurance plan and have filed a formal appeal to their denial for Grayson's out of state care request. We have scheduled the surgery date for September 7, but will have to pay for anticipated expenses of approximately $150,000 by September 5, in order to keep our surgery date.
The Tumor Board at CHLA reviewed Gray's case again last Tuesday, and the Neurosurgeon's at CHLA stand by their opinion that surgery is not an option for him. Since it is necessary to remove the pressure that is causing so many problems around the brain stem, and both the Neurosurgeon at Johns Hopkins in Baltimore and Sloan Kettering in New York agree, I still feel this is the best option. Gray deserves the opportunity for the best quality of life possible for him. After the surgery we will start a more aggressive chemotherapy regimen, and it is important that we have the surgery first as the chemotherapy could potentially cause complications with bleeding in the surgery. It is my hope that we can raise this money in time, or get a favorable determination from the State Health Insurance plan in time to avoid being forced to start chemotherapy, out of fear of more tumor progression. Having the surgery in New York is the best option, and that in itself will difficult with travel and living expenses away from home.
The Talbert Family Foundation has set up a tax-deductible charitable fund to enable people to donate directly towards Grayson's expenses associated with his medical situation.Please take the time to ask your friends and family, the way we are asking all of you to pass this along. We have supported many fundraisers for many families, and quality of life organizations for our kids, and firmly believe in paying it forward. We have a village of people that support us and the causes that we believe in, and we are so grateful for all of you.
~beLIeVE in miracles
michelle and gray