My family was thrust into the world of childhood cancer when our daughter, Phoebe, was diagnosed in October of 2010 with a rare, not well understood, difficult to treat and cure, Infantile Leukemia. She was 9 weeks old and with the best treatment available, she was given a 10-15% chance of survival.
Six months of in-hospital and intense chemotherapy brought mouth sores, infections of the blood, skin and gut, stays in the ICU, medications on top of chemotherapies to control pain and nausea and many nights filled with worry and fear. When this was finished and Phoebe had barely healed, we were ready for transplant. Transplant was horrific. Phoebe spent most of the 60 days in the hospital on morphine. She had an acute and often fatal liver disease, GVHD, mouth sores so painful she could not open her mouth and would hold her beloved soother beside it as a means of comfort, she was unable to sit up by herself when she finally started to heal and was completely tube fed. Over a period of 9 months from treatment to transplant we watched her fight and struggle through indescribable pain. It was one of the most trying and exhausting times of our lives, but we were hopeful that at the end, she would be cured. We believed she would be cured.
Just 76 days after transplant and after being home for only one week, Phoebe relapsed. Her blood was once again thick with Leukemia. Her bone marrow, liver and spleen overwhelmed with disease. We searched for options and were told that there were none. I remember the shock and devastation of the relapse, but also the prognosis. We were told that the Leukemia would take her life in weeks and that there was nothing we could do about it but wait and keep her comfortable.
We refused to believe this. For the first time in months, Phoebe looked well. Even her doctors noticed this. We felt like she was telling us that she wasn’t finished fighting. Our treacherous journey with cancer up until this point had taught us to be strong advocates. We were Phoebe’s voice and we spoke up and asked our local doctors to help us search for something to cure Phoebe, or at the very least, extend her life. When met with resistance we kept pushing. We pushed harder than any parent or person should have to push just to be heard.
We quickly realized that much of the experimental and novel treatment available was outside of Canada. Canada has one Children’s Oncology Group (COG) phase 1 centre, Toronto’s Hospital for Sick Children (SickKids), and so we went there for a phase 1 clinical trial. This was the single option available to us in Canada and reading page after page of side effects and warnings regarding the experimental treatment filled me with intense anxiety and left me questioning our decision. Our doctor, who we trusted and greatly respected, was “excited” by this new drug and so we pushed forward. It was, after all, our only option. It was our only hope and we still believed that Phoebe would be cured.
The trial failed and so we began to explore options outside of Canada. With the help of our doctors at SickKids, we were transferred to St.Jude Children’s Research Hospital in Memphis, TN.
The treatment we received at St. Jude was innovative and ground breaking. It was also completely paid for by the hospital, which made it possible for us to receive it without losing everything we had at home. More importantly, it gave us a year without cancer. When Phoebe relapsed a second time, we had the support of our doctors both at home in Canada and at St.Jude. Unlike the first relapse, we were not alone. Our doctors worked with us to find options for Phoebe. They listened to us and advocated on her behalf and they supported our decision to continue treatment. Although we were once again racing against time and cancer with the hope of finding another clinical trial, it made a world of difference. I also like to think that since the first relapse, they too had started to believe, if not in Phoebe’s cure, in her ability to teach them new things and in the possibility of greatness.
We have been lucky. On this journey, I have learned that fitting the criteria for enrollment in a clinical trial is not easy. It is akin to winning the lottery in the world of relapsed cancer treatment. You must be in the right condition at the right time and the right treatment has to be available. We have struggled knowing that Phoebe has filled the last remaining spot available in a trial while other children have been left to wait – we have been on the other side, heartbroken and left to wait with no options or spots available. We have risked losing everything from our house to our jobs for one more chance at a life for Phoebe.
For families like mine who have exhausted all conventional treatment, it is frustrating, exhausting, and frightening to think that the “cure” could be found in one of these treatments yet they may never be available or accessible to the kids who need them.
More needs to be done, not only to invest in pediatric cancer research, but also to bring this research to the bedside. Groundbreaking research like what led to Phoebe’s cure is not reaching the children who need it due to a lack of funding and support from our governments and drug companies. The Canadian government currently spends an average of 3% of all research dollars on pediatric cancer initiatives. Only one new drug has been approved for the specific use of pediatric cancer treatment in over 20 years. Without support from governments, progress is being made on the backs of children, like Phoebe, who without options, are forced to give to science with the hope of a cure.
Phoebe, like so many other children, relies on progress and advances in research. Her life depends on it. She has currently tried all options available for treatment of her disease and although she is doing well, we need to know that there will be something out there to save her, if we are thrown off this smooth path.
We need to do better than this.
Jenny was once a teacher and is now a childhood cancer parent, advocate and writer. She lives in Ottawa, Canada with her two daughters and husband and works to raise childhood cancer awareness after learning first hand the devastating realities of childhood cancer, brought by her youngest daughter’s diagnosis with infantile leukemia. She documents this journey in her blog titled Phoebe Rose Rocks.