This video was taken over 5 years ago in a hotel room in Vermont. I had taken my then 4 year old son to enroll in a phase I clinical trial in an effort to save his life after having ‘exhausted all know curative therapies’ nearly three years before according to the folks at the Jimmy Fund.
I had to take my 19 month old daughter Evelyn with us on this trip as we just had our third child Catherine. Will had a spot on this phase I study with an experimental drug open up just 8 days after his little sister arrived. So we left our home, our new family member and a mom recovering from her third C-section to try to keep our son alive.
The video above gives you a glimpse of the insanity that took place that summer as we started what would be a year of weekly 500 mile round trips for his chemotherapy infusions in Vermont. I spent many sleepless nights at this hotel fearing that Evelyn and Catherine would never get to know their brother – that I would no longer have a son.
Fearing that we would have to teach them about their ‘unknown’ brother through videos, photos and a handful of stories they’d hear over and over and over again. I can remember thinking to myself “maybe Evelyn will remember him” and hoping that we could keep him alive long enough for Catherine to have some foggy recollections to carry into her adulthood of her brother as well.
Fast forward 5+ years to this morning and all three kids got into the car and we dropped them all off at their school for the day. Will just turned 10 years old and has started 5th grade and when he walks down the halls he sees his sisters Evelyn (1st) and Catherine (K) roaming the halls.
It is simply amazing that what we had dared to dream for is now our reality.
And it is NOT miraculous. What would have been miraculous is if we listened to the folks at the Jimmy Fund when he was 2 years old and took him home to die only to see a miraculous cure as we did nothing for him.
Through lots of hard work, research and advocacy we found a doctor who shared our hope. But hope was not enough – and we had to raise money to help this doctor turn hope into reality. And after having to raise and donate close to $2,000,000 to support her efforts we find ourselves where we are today – parents of a 10 year old boy and his two sisters who love him dearly. A 10 year old boy who endured nearly 8 years of chemo to keep him alive and who is now thankfully 20 months off of all therapy thanks to Dr. Sholler and the NMTRC!
We are blessed with such great support that helped make it possible to not only save our sons life but to also create that same opportunity for other families across the country. Dr. Sholler is changing the world thanks to your incredible support.
Mind if we hang out
in your inbox?
We only email once or twice a month, always relevant to how we're working to beat neuroblastoma and other childhood cancers.
Thank you for subscribing!
Something went wrong.