Sometimes best to think the worst
March 5, 2013
I would like to follow up on Mr. Tom Lancaster’s letter, “Be wary of rare forms of Childhood Cancer.” As with Mr. Lancaster’s grandson’s retinoblastoma, my own grandson developed childhood medullablastoma (brain cancer) at the age of 3. As with Mr. Lancaster’s grandson, there were early signs in which several doctors, in addition to ourselves never considered brain cancer. It involved throwing up, change of personality, neck pains, etc. Eight weeks after the initial signs, one doctor saw an uneven balance in my grandson’s walk. He called for a brain Cat scan, although he felt the hospital might not back up his diagnosis. He went ahead anyway. The Cat scan indeed showed a brain tumor.
We have since been told by many doctors the only time one could have made an early diagnosis of his brain cancer would be if he fell, hit his head, and then took a Cat scan of his head. Like Mr. Lancaster’s grandson, who knows when these kinds of childhood cancers start? Could it have started at birth? These are terrible, unanswered, questions.
My grandson faced half of his life (19 months) in three cancer hospitals, San Diego and L.A. Children’s hospital as well as Sloan Kettering Memorial Hospital in New York City. As Mr. Lancaster’s grandchild, my grandson would wake up the next day after chemo, radiation or radioimmune therapy as if nothing was wrong and play the rest of the day. It is said that an adult facing the same treatment would take twice weeks to recover.
The entire cost of care was over $2 million. Luckily, we had good insurance, but it still cost us thousands of dollars.
So, I must concur with Mr. Lancaster’s premise that it is wise sometimes to think of the worst. It is also important to find a good doctor. Cancer in children is normally the last thing we, as well as many doctors, consider. It is usually the last diagnosis.
I now contribute to the Children’s Pediatric Fund, the three hospitals mentioned above, Ronald McDonald House, and many other cancer research funds.
I know how proud many families can be in not asking for help, but costs in treatment for this disease are so prohibitive that it is not the worst thing for families to reach out. There are many people willing to help, including myself. Perhaps this is my main reason for understanding the nature and need for Obamacare. The cost for treatment of this disease does not allow families to pick themselves up by their own bootstraps.