Before, in the midst of treatment, I read about every child with cancer I could find. One mom sent me an email that said, “are you still collecting kids?” My mind and my fingers searched for anything and everything specific about leukemia or treatments.
Moms and dads share the nitty gritty. I learned a lot and often condensed it and regurgitated it into something personal and hopefully useful.
Reading about those kids became less and less useful as I sat in front of the computer crying because a procedure when awry or a child died. That being said, I have a few that I check in with regularly. And from those I get post ideas or even just blatantly link to their sites.
Today, I read a post about how yesterday was the last day of Childhood Cancer Awareness month. I had hoped to write more about the topic myself, but didn’t. Her daughter has the same form of leukemia that Isa does. So I am stealing her words. Thanks for writing the following:
Childhood cancer is considered “rare,” and receives the table scraps of funding for treatment and research compared to many of the adult cancers. But it strikes at random, and with no warning parents like us are told that their child is the one of the 46 children in the United States that are diagnosed each and every day. 46. Each and every day. How many children are in your child’s school? His/her grade? Here in Montclair, that’s roughly the equivalent of two classrooms. Next time you walk past two classrooms, think about one of those children being diagnosed with cancer. Think about the parents of 1 of those 46 being told something no parent ever wants to hear: your child has cancer. Is it really that “rare”?
Overall, almost 80% of children diagnosed with cancer survive. Although 80% sounds good, it means that more than 1 out of 5 children diagnosed will die. Would you want to play those odds with your child? Cancer is the number one disease killer of our children.
And let’s take a closer look at that “wonderful” [almost] 80% statistic. What does it really mean? When these “survival” statistics are bandied about, what is really being discussed is the 5 year event-free survival rate (EFS). These statistics track these children for 5 years, and then record how many have survived. Five years may be a decent amount of time when you get older, but for a child? They have their whole life ahead of them. And 5 years gets you, well, 5 years. Yes, the relapse and morbidity rates drop significantly after 5 years, but they do not end at that point. I know of several children who had A.L.L. who relapsed after they had achieved a 5 year EFS. Beautiful, spunky Anika Wilke relapsed just a handful of months after she reached her 5 year remission date. Originally diagnosed at 22 months old, she fought a brave battle once again, but to no avail. This disease — this form of leukemia thought by many to be so “curable” — tragically took her life last August. Yet according to the statistics, which stop recording at 5 years out, she was “cured.” So next time you read about childhood cancer statistics and the percentages that survive, think about Anika. According to those statistics, Anika should still be here. Tell that to her grieving parents.
And what of the survivors? Approximately 60% of the children who survive will suffer long-term side effects, such as brain damage, secondary cancers, congestive heart failure, lung damage, and infertility. So of those 80% who “survive,” almost two-thirds who live will suffer lifelong serious side effects of the treatment that saved their lives. Once “cured” of A.L.L., My daughter will have to be seen by an oncologist regularly for the rest of her life. Why? Because her chance of developing a secondary cancer down the line, compared to the general population, is so tremendously increased.
We need to make childhood cancer research and treatment a priority. Is it really so “rare”? Is it really so “curable”? And at what cost? Brave Anika should still be here. She should be going to school, playing with friends, being a child. When you see these statistics, realize that each and every one of them is a child. With parents, and siblings, and grandparents, none of whom should ever have to say good-bye.
These children are our future. They can’t speak for themselves. So we need to speak for them.