THE AMAZING GRAY FUND
On May 16, 2000, our little super hero, Grayson was born.
UPDATE FEBRUARY 2017
It has been a long eight months. Gray has suffered so many complications the past year, and we have been faced with some very difficult questions. The answer is "quality" of life for Gray. Fortunately, we figured out that he was having shunt malfunction/failure. The shunt is the tubing system his brain needs to navigate around his tumors and drain cerebral spinal fluid. Without it, he experiences pressure which causes many serious brain malfunctions, especially when it involves the brain stem. Last September he received all new hardware in his shunt. This was a dramatic improvement, but we are still left to navigate the long-standing effects of pressure which causes scar tissue and other problems.
Scar tissue, dead tumor tissue, and live tumor all cause problems for Gray. We did genomic testing of his tumor in hopes of finding a targeted treatment that would kill the tumor cells without being so toxic like many standard chemotherapy options. Unfortunately, we did not get any exciting options due to his previous history of brain hemorrhages as a result of previous treatment.
February 28 he will have another MRI of his brain and spine. We will then decide if he will have another major decompression surgery to relieve chronic pressure on his brain stem or start a treatment that should give some shrinkage but typically only when you stay on it, and then have the surgery. This is a very risky surgery that would be done in New York and only be attempted to improve his quality of life. Still many unknowns, and as always I look to Gray to guide the way.
Until then, we party and live every day connecting with those who make our world complete. Gray still loves to dance even though his coordination is not really there. If he cannot dance when Joe comes to hang out, they just do whatever is fun for that day. We fit in karate with Master DonVito when we can, and Gray enjoys his art and music therapy to help him get through some of the tough issues that his life brings. He continues his home teaching with his beloved Ms. Rosie and we enjoy visits from our family and our friends who have become our family.
This May will mark eleven years down this long winding road. We are so grateful to those near and far who continue to walk beside us.
~beLIeVE in miracles
xo Michelle and Gray
Update December 2015
The Talbert Family Foundation has been supporting Amazing Gray and our journey for the past seven years. Once again they have generously committed to match donations to the Amazing Gray Fund to help us with the immense costs involved to ensure Gray gets all of the therapies, treatments and equipment that it takes to provide Gray with critical and necessary care. The blue link below will take you directly to his page and you can click the DONATE NOW link on the page to take you to the online donation form ** please remember to enter the Amazing Gray Fund on the donation form.
This past year our focus has been to keep Gray status quo at home. A year ago last November, a simple cold put Gray back in ICU on a ventilator, which triggered a series of setbacks that he has been unable to recover from. While in the hospital his central line was infected with a serious bacterial infection. We spent half of that December in the hospital trying to identify an antibiotic that would treat the infection and also deal with Gray's severe gastrointestinal damage from treatments and complications of chemotherapy and surgeries. Thankfully, we made it home before Christmas in 2014, and we were treated by so many who came to celebrate the holiday festivities with us at home. We have been able to avoid an ileostomy thus far in hopes that Gray's gastrointestinal issues will improve, but he still requires several treatments per day in an effort to keep his gastrointestinal tract moving. The year of 2015 seemed to follow suit with one complicated infection after another. We have been dealing with a staph infection and an eye infection that continues to rear its ugly head, which we have been treating for seven months. He also developed walking pneumonia and recurring sinus infections that we have not been able to get rid of. After a 45 day course of heavy duty antibiotics his body just can't seem to fight anything.
This past October we moved from the home that we shared with my sister, Gray's Auntie Tammie, since she will be relocating her home and business hub out of state. This will give her the opportunity to have a home that our parents can share so that we can all keep a closer eye on their health as they get older. Gray and I have to stay in LA close to all of the Docs that are very involved in his day to day care. We are still working hard to get our new place outfitted for Gray and all of his specialized medical needs, along with the usual headaches of a move, unexpected expenses and necessities. I am hoping that once we get all of the issues fixed in this condo, we can truly get completely set up, because moves are so hard on Gray.
I have become very experienced with managing his mineral electrolyte balance with our iSTAT analyzer. It has definitely been a game changer for Gray and our previous life of round the clock hospital runs for STAT lab results. We no longer have to fear dangerously low sodium levels, because I have been able to clearly identify his symptoms of low sodiums and adjust his medications and fluid replacement. It is still very complicated managing his fluid balance, we literally monitor his vital signs continually or at least hourly, and sometimes he just throws us curve balls and there is no rhyme or reason for his changes. This is typical with brain injuries, they are very unpredictable.
Gray requires 24 hour nursing care, but since our private insurance policy does not have long term care, I personally pay the nurses and/or we rely on state funded and regulated programs that really don't understand his needs. He does not fit in a typical category, and really, we provide the care of an ICU setting at home, so it is a continuous battle for funding. Private LVN at home is costly, and not even qualified to care for Gray since he requires constant labs that need to be run STAT, so this leaves me alone more often than not providing Gray's care myself. I have to prioritize my time away from him when I do have a nurse that I have trained to properly care for him, and it is mostly just so I can get out to get supplies, and specialized food for his diet and gastrointestinal issues.
It seems the older Gray gets, the more difficult the medical trauma effects his sweet soul. He struggles with PTSD, extreme anxiety, and suffers from horrendous flashbacks of procedures he endured during critical times. His brain is starting to remember those times and he is now afraid to go to sleep for fear that someone is going to hurt him. And when he does go to sleep, he often acts out by taking off his oxygen, probes and monitors and becomes violent in the night when I am trying to keep him safe. This is all further complicated by trying to replace all of the hormones that his body does not make and keep him happily balanced. Much easier said than done. We are seeing more aggressive behavior, angry outbursts and deep unhappiness. As Gray's Doc says, the physiological issues we can treat and do our best, but his mental health is very delicate and worrisome for all involved. My once positive, upbeat boy goes to a very dark place which is heart breaking for me because he has suffered too much. I have been forced to make some very difficult decisions, whether to further treat his tumors or not, and for Gray the most important thing has always been a quality of life. When he was constantly suffering in pain, he did not want anymore treatment. He chose to have the major decompression surgery to try and alleviate his pain, so I know that it is very difficult for him to push through his dark days when he feels like his life is no longer worth living. He often feels very isolated, being homebound to keep him healthy. It has become so important to keep him living, feeling, and enjoying life. When he does go out, you can see his spirits lift and he turns into another kid, always the life of the party.
Always the best for last. Gray has really come a long way with his home schooling and remained very involved with the programs provided by foundations that enable critically and chronically ill children to participate at their own ability. These programs are a vital part of his lifeline and give him the opportunity to be part of something. Many of the people involved in these programs have become like family to us, and always make time to check on our amazing one, especially when I am just completely overwhelmed with all of Gray's details. We love them! Onward and Upward to a bigger and better 2016 full of miracles.
~beLIeVE in miracles
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