Round 6 was the only chemo round that did not throw Tyler back into the hospital with side effects. Round 8 was almost a duplicate of round 6, so hopefully we will keep him home. This Saturday is the Dublin Relay for Life, and Tyler is hoping to attend the event.
Beyond that, we have a three week wait to see the effectiveness of the chemo. Then scans, tests, and final decisions about ending chemo.
The plans for the bone marrow and stem cell transplants are still tabled at this point. The majority of the doctors we have spoken to are now recommending we not take those measures.
We have really learned how important it is to seek the advice of many doctors. And most importantly, find ones who are willing to speak honestly about the options, and admit when they do not know (which has been our biggest struggle). We have found that even the best hospitals use what they call "frequency data" to calculate risks and predict outcomes. This allows them to better control costs, and protect against lawsuits. The formula is PROBABILITY x CONSEQUENCE = RISK. Protocols are created around this information. But there is a problem. Rare cancers do not exist in quantities high enough to effectively calculate probabilities. Therefore, rather than take an individual approach to the treatment, these rare cancers are grouped into protocols of "similar" cancers. The general protocol stats are then quoted with absolute certainty. There seems to be a belief that using individual decision analysis is far to expensive and time consuming to be practical. Insurance companies see costs, legal departments see lawsuits, and the hospital administration drops the hammer.
The first and most important step when facing cancer is to find out how similar your case is to the "statistical average" of the protocol you are on. Unfortunately, this is not easy information to find. Through this process I have been given a lot of statistics for Tyler's chances of beating this cancer. But when I asked what percentage of the statistics were teenagers with stage IV Burkitt's with bone marrow involvement, I would usually get a blank stare. It took a long time to find the answer. About 2%. So how do those patients in the 2% respond to the treatment? No one seems to know. That data has never been researched.
There are doctors who are exceptions to the rule. There are individual doctors who are willing to look beyond the "one size fits all" approach of protocol medicine. As one doctor at Children's told me, the problem is not doctors, it is the medical establishment. The best doctors refuse to bend to the pressure, and work in the best interest of their patient. Find these doctors, and make them your closest advisor. Do not forget...Sinjin's doctors said their were no further options. Per protocol data, he would never survive the transplant. His mother forced them to proceed. They said it was impossible, he would never survive the procedure. But Sinjin said change "impossible" to "I'm possible". He is alive today, 39+ days after the transplant.
- The number of teenagers diagnosed with cancer has increased every year for the past 25 years.
- Teenagers and young adults (ages 15-22) are the only age group that have flat or declining survival rates from cancer.
- In the past 25 years ONLY ONE new cancer drug has been approved for pediatric use. Since kids can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments.
- For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
- Teenagers have the highest fatality rate of any age group. Their cancers tend to be much more rare, therefore lacking established treatments. Their cancers also tend to be far more advanced when diagnosed.
- At the time of diagnosis in teens, the cancer has already spread in 80% of the cases. That is compared to the 20% in adults
- A 5-year study at Children's Hospital Pittsburgh of UPMC recently concluded that teenage cancer survivorship is lower due in part to a lack of access to clinical trials. They concluded: "Patients who are enrolled in clinical trials offering the most advanced cancer treatments do better than patients who receive conventional treatment. Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical trials."