ASK kid Caleb was diagnosed Stage IV High-Risk Neuroblastoma in February 2017 at the age of 3. Last April, Caleb was in the hospital and was just starting his 14-month long treatment journey. He and his family were unable to attend the annual ASK 5K & Fun Walk which brings together ASK's kids and families for a day of celebration and remembrance. This year was different. Read on for Team Caleb's story as shared by ASK mom Kimberly.
From Chaplain Tom David’s first visit during our scary first hospitalization (who by the way has spent time with us every single hospitalization including some clinic visits) to Katie’s first visit to Caleb during his first clinic visit, always providing the red DVD player and the DVD collection to Caleb--and ALL of the support we have received from ASK over the past year from encouraging notes in the mail and gift cards to fun events for the kids – we were welcomed into this family with open arms! And as most of you know, when you are thrust into such a scary new world that is childhood cancer, having this kind of support is crucial.
We weren’t sure if we should go the standard treatment route or head to Sloan, CHoP or somewhere else. We traveled for other opinions. We ultimately decided to complete treatment here at home at VCU. Caleb ended up having a successful surgery on June 7, 2017 and went on to spend most of his summer in the hospital enduring two stem cell transplants, 12 radiation treatments in the fall and then six rounds of immunotherapy in the hospital throughout the winter. And on April 17, 2018 he took his last treatment dose.
Caleb will start a clinical trial in a few weeks to help keep him in remission but it will be a breeze compared to everything else he has been through. We have had a tough year, but we have been able to see the blessings more than anything else.
We now have a cancer family! We have supported each other, even if just by following each other’s journeys, in prayer or in passing in the halls of the hospital. Some kids are doing well and Caleb’s health has been restored, but still others we’ve lost. Some we followed their pages. Some we just met their parents. Each passing we felt deeply. It was personal. Many of these kids have walked this walk before.
This is not fair and this fact keeps us from celebrating too wildly. There is just too much heartache that we feel for these parents. And really, there is always that nagging fear deep inside that Caleb’s cancer might return. We watch him play in the backyard, up to his ears in mud wearing his fireman rain boots pushing his dump trucks around. We see him dancing in the living room. Antagonizing the pets. Driving his sisters crazy. But it’s what we don’t see that tends to overshadow our joy. Fear creeps in as we wonder what could be brewing just beneath the surface. It’s never ending. This is our life now, but we can’t sit in fear. We must keep moving forward.