Gavin’s Gladiators

https://www.facebook.com/gavinsjmmljourney/


How the Journey began....

At nine months, Jenny and Brad took Gavin to the doctor for his "well-baby" exam.  It was then they realized he had an enlarged spleen, which didn't immediately cause concern, because he was recovering from an ear infection and that would be consistent with his body fighting infection, but still advised them to get an ultrasound and blood tests.  

Over the next six months, Gavin was sent from doctor to doctor, took endless blood tests and bone marrow and muscle biopsies. 
After months of waiting, the day finally came when they got the dreadful news that Gavin was sick- and worse, with a disease that is relatively unknown to the medical community-JMML.  JMML is already an extremely rare form of Leukemia found in the blood, affecting only about 3 in a million cases and Gavin's specific kind is even a rarer subset of that, with only 50 cases ever having been reported-and not only affects the blood, but his entire body.  What  this means unfortunately, is that there is very little research on it and even less proven treatment options.

After meeting with the world's best doctors on JMML research in San Francisco, the prognosis was still unclear. He began chemo immediately.

Where we are now .....
 
I wish we could say Gavin has since beat this awful disease and recovered, but unfortunately that’s not the case, and he still has a long way to go. Over the last three years, Gavin has been on numerous different types of chemo, steroids, trial drugs and other medications in an attempt to eradicate this nasty cancer in a less invasive way than a bone marrow transplant. But, we are at the point that nothing else is working and they think this is the only chance our sweet guy has.

Up until this past January, his prognosis was looking good and we were even able to see the doctors less frequently. However, in January, after acknowledging his enlarged spleen was still not getting smaller and his white blood cell counts were still showing his cancer was very active, they decided to put him on a trial drug that had helped other cancer patients’ spleen shrink and were hopeful it would help Gavin too.  Around April we started noticing sudden weakness in his legs, that began to get worse and more frequent over time – until losing almost all of the strength in his body.
The Saturday before his 4th birthday we took him to the ER in St. George. He was immediately medevacked him to Primary Children’s Hospital in Salt Lake, where he continued to lose strength and was hospitalized for over a month.

At this point his specialist decided it would be best for Gavin to receive a bone marrow transplant to give him the best chance he has at a normal life. With this cancer being so rare, and complicated,  we now feel confident for his bone marrow transplant Gavin needs to be in the best care possible, under the care of the experts in JMML, in San Francisco.

Gavin’s oncologist in San Fransisco let us know this past Wednesday it would be best to start a round of intensive chemotherapy this week, that will last 4-6 weeks inpatient in San Francisco. After that and depending how his body reacts to the chemo, they will do a second round of chemo lasting the same amount of time, and then they will start the transplant immediately following - which will keep him in the hospital another two-plus months and needing to be near the hospital for an additional month. This will all be in San Francisco California.
Jenny, the baby and Gavin will be staying there while Brad and their come back to St George, so Brad can work and she can  go to Kindergarten.
We are hoping there is a light at the end of the tunnel after all of this – but the next six months at least,  are going to be very difficult emotionally, physically and financially.
Anything you are able to contribute will go a long way to ensuring finances are the farthest thing from  their mind as we work on getting Gavin better.
Our hope is to be able to raise enough money to keep Gavin healthy and that Brad and Jasmine can spend as much time as possible with them in San Francisco. Please help this little family be together as much as possible. Thank you!