Tyler's walking is getting better. He may start some more physical therapy soon. As we work closer toward remission, we are focusing on some of the side effects of all the drugs that have been pumped into his body. One of those drugs, Vincristine, causes nerve and muscle damage, primarily in the feet and ankles. It is called "Vincristine-Related Peripheral Neurotoxicity". That obviously causes some difficulty in the coordination of walking.
There is a drug currently available in clinical trials, Glutamic Acid, that has shown to significantly improve this condition. Unfortunately I just recently discovered the on-going trials, and the drug needs to be given at the same time as Vincristine. Since Glutamic Acid is not part of the "standard protocol", we were never given the opportunity to consider it's use.
Earlier this week The Columbus Dispatch had an article about a new effort to create a national bank of tissue samples specifically focusing on teen cancers. This is a result of a 5 year study conducted at Children's Hospital of Philadelphia that concluded that the adherence to protocols is a leading cause of the poor survival rate among teen cancer patients. It was the first study of its kind, trying to understand the poor survival rate among teenagers and young adults. The report highlighted "gaps in knowledge", and concluded that "adolescent and young-adult cancers are not well understood and are sorely understudied."
Unlike the improvements in childhood and adult cancers, teenage and young adult cancers have seen essentially no improvements in 25 years. Candlelighters, one of the nations largest childhood cancer advocacy groups, refers to this as "The Teen Gap". Dr. Michael Caligiuri, CEO of the James Cancer Hospital, stated "We only make progress through research, and research for the last five years has been woefully underfunded, I would even say neglected." Charlene Liggins of the National Cancer Institutes Office of Science Planning and Assessment said her office is "working to improve knowledge about young people with cancer, but there are far fewer experts in that area than in pediatric cancer and cancer in older adults."
Unfortunately, oncology groups at many pediatric hospitals are increasingly taking an unbending approach toward protocol treatments. This "one-size-fits-all' approach is not medically based. It is cost-management based. It allows the hospitals to increase the patient-doctor ratio to the point that individualized care is almost impossible.
The protocols can be very effective at treating patients who match the statistical model of the protocol. However there is not a single teenage or young adult protocol in existence. Further, most teenagers get rare cancers that do not have their own protocol. The result is that the teenagers do not match the statistical model the protocol is treating. The doctors simply do not have the time for individualized care. There is also pressure from the hospital administrators, legal departments, and the insurance companies to remain strictly within the walls of the controlled and cost effective protocols.
This is why I am running the marathon. The Team in Training program has raised $850 million dollars for cancer research over the past 20 years. This research is needed. If you agree, there are a couple of things you can do.
1. Sponsor me with a dollar or two for my race. I just got the sit up, so you could be the first. http://pages.teamintraining.org/coh/columbus08/kalfriend
2. Sign the petition http://www.thepetitionsite.com/1/CureChildhoodCancer.