…68 Days Until Race Day
Eighteen years ago today, this young man was diagnosed with Juvenile Chronic Myleomonocytic Leukemia (JMML)
He was 4 months old.
This is Jake’s story.
Jake’s treatment lasted 5 YEARS and included 2 bone marrow transplants:
Transplant #1 – April 9, 1999 – 5.5 months old
Transplant #2 (Peripheral Stem Cell Transplantation – PSCT) – September 25, 2000 – 23 months old (this is the one Jake and his family “count” because remission was obtained!!!!)
Because of the transplants, 3 of Jake’s 5 years were treatment for unstable Graft-versus-Host-Disease (GvHD). GvHD is a potentially life-threatening condition where the transplanted immune cells (bone marrow) attack the host’s body (Jake’s) cells.
Although Jake’s story is one of survival, it is also filled with painful reminders of how cruel even a victorious battle with cancer can be.
Some of Jake’s future was taken from him on 2/19/99.
This is the reality of beating childhood cancer. Although you’re victorious and survive, what you’re left with is almost, if not just, as unfair as the diagnosis itself.
Jake’s mom, Danette shares the impact that cancer STILL has on her son 18 years after his diagnosis.
“Destruction of the para-thyroid gland (Jake’s been on thyroid medication since age 10 ).
He has restrictive lung disease (insufficient lung function, this is a chemotherapy side effect).
Jake has pre-diabetes from long term steroid use.
He developed osteopenia and stable scoliosis from radiation and long term steroid use. To combat this, Jake must consume large amounts of calcium and vitamin D.
Jake has been subjected to growth retardation. The use of a growth hormone improved his condition somewhat but daily injections for approximately 2 years resulted in a large benign tumor which required surgical removal.
Perhaps Jake’s most significant side effect is multiple severe eye issues due to the fact that he does not produce tears. This is both painful and puts him at increased risk for eye infections. For this he has had multiple surgeries (cataract removal, retinal repair 4 TIMES) and instillation of eye drops (prescription and OTC) for protection and lubrication.
Jake is nearly blind in his left eye and has peripheral field loss.
Therefore, he DOES not drive, something that nearly every teenager longs to do! This currently stifles his independence and limits his availability to obtain a job.
He misses a lot of school due to continued medical needs.
The future is unclear and somewhat frightening, BUT we remain incredibly grateful for his life and all that it has taught us.
I tell you with full authority….Cancer sucks for a long, long time, make NO mistake. I’m SO grateful for his survival, just mourning over the inability to “fix” what it broke.” – Jake’s mom, Danette
Coming off of yesterday’s marathon, the last thing I wanted to do was run today. It was the thought of KNOWING I was running for Jake that got me out on the roads.
Jake, it wasn’t fast, nor was it even a very long run, but we got it done…all because of you!
Who will you meet tomorrow?