Breakaway Cycling Adventure for Kids with Cancer

Nate was diagnosed with stage 4 high risk neuroblastoma cancer at 2 years old.  Neuroblastoma is a solid tumour cancer and for children with high-risk disease – every type of treatment is thrown at it.  My husband went on leave from his job and we balanced our way through this new world of childhood cancer.  Nate went through five months of intensive chemotherapy and a 10 hour surgery to remove the tumour.  Next was one of the hardest points in treatment – stem cell transplant.  Children are given five days of mega dose chemotherapy to completely destroy their immune systems.  They are infused back their own stem cells that were collected earlier in treatment.  The body then fights through the ravages of the mega dose chemotherapy until the new stem cells start to rebuild the immune system.  For Nate’s stem cell transplant, we were inpatient for 40 days straight.

Treatment continued with 17 days of radiation and then onto five months of an innovative immunotherapy that could precision target any remaining disease in his body.  Unfortunately, the main side-effect of this treatment is intense pain.   As we got closer to the end of treatment, life started to get a little normal again until everyone in the house came down with a flu bug, Nate too, or so we thought.  As we got better, he didn’t.  An emergency CT scan showed that Nate’s cancer had relapsed in his brain. He was a code blue into the OR.  The surgeon was able to remove the tumour but with this new turn, we were told that a neuroblastoma relapse in the brain was 100% fatal – that we would only have a few months, if we were lucky.

Nate went through more radiation, more chemotherapy, and more high-dose chemotherapy. The only place in the world that offered a promising clinical trial for this relapse was at Memorial Sloan Kettering Cancer Centre in New York City.  This clinical trial was seeing about a 75% response rate.  We knew that we had to get Nate there.  In order to start the process, we had to provide Memorial with a retainer which required us to remortgage our home (which we were lucky enough to have), use all of our savings, and borrow heavily.  In that process, I also lost my job.  We applied to our provincial health authority, OHIP, to pay for the treatment and they denied our claim.  We appealed and they told us we could have half of the clinical trial.  We appealed again and OHIP agreed to pay for the full clinical trial.  We got Nate to NYC. 

Nate went through two months of intrathecal immunotherapy – a liquid radiation that was injected into his brain and spine through a port in his head.  He then went through lots more chemo and 5 more months of immunotherapy – again where the main side-effect was intensive pain.  We travelled back and forth to NYC under great expense. After 5 full years of constant treatment, Nate’s hardest decision was whether to be Superman or a Ninja.   Nate is now 13 years old.  He deals with many long-term side-effects from treatment but we feel immensely blessed.

Unfortunately, our story is not a unique one.  Families across Canada must travel for treatment – hundreds of kilometers within their own province, to other provinces, and other countries.  A childhood cancer diagnosis also significantly increases household expenses as parents must pay for hospital parking, medications, accommodations if they are coming from out-of-town, and a wide array of new costs that were not in the family budget.  Imagine Nate’s story playing out during this pandemic, and sadly, it is for childhood cancer families across Canada.