Perhaps this is part of my own PTSD (posttraumatic stress), but I have never let go of the sense of urgency and helplessness I faced when first hearing my own child had cancer in 2004. This urgency and helplessness is not for my own child anymore, yet it is as strong.
See, every day 36 children in the US are diagnosed with cancer, and 15% of those (5 kids a day) will receive the least survivable diagnoses. The other 85% will spend 2 to 5 years of their childhoods in treatment, with the extremely blunt instruments of chemotherapy, radiation, or bone marrow transplants. I do not want any other parent or family to have to face what my daughter and I went through. . . and she had one of the easiest to treat, best case scenarios.
The problem for research is the numbers of people affected are just not high enough to interest the bio-pharma complex, even though pediatric cancer is still the #1 killer of children by disease in the US today.
Today I read about work at Seattle Children’s Hospital that is the most hopeful I have seen yet because this treatment uses a child’s own immune system (T-cells) to kill the cancer cells. The time is now. All that is needed is funding to transform what works in mice in the lab to human children. Seattle Children’s has built a facility to handle these special cells, and in roughly 2 years they expect FDA approval.
After a 20-year collaboration with a researcher (Dr. Stan Ridell) that identified the type of T-cell that can multiply and live long enough inside a child’s body, Dr. Mike Jensen has created the genetic code that reprograms the T-cells to recognize the cancer cells. You can learn about his work here: http://seattlechildrens.org/jensen-lab/
The type of support for medical research the NIH provides does not cover research that takes discoveries like his from the lab to the bedside. And only roughly 4% of the National Cancer Institute’s budget goes to projects involving any of the 12 main pediatric cancer types. Dr. Jensen says: “We just need support from people who share our vision and our urgency.”
The level of frustration I feel at not being able to do the only thing I can think of in my power (walk across the US to raise funds), since I have no money to give, is huge. Most days I have to breathe through the stomach and heart ache of it. A part of me knows it is unhealthy for me to think I should shoulder the burden of it, but I do know there are many who would walk with me or house me along the way, and that if it were possible today to leave my job, find a place for my daughter to stay for nearly a year, and head out on the road tomorrow, I would.
Possibly in 7 years when I think I can realistically start such an endeavor, the research will already be funded and a done deal. I can only hope.