Long Term Survivor (Day 209, Year 2)

Lily was 14 months old when she was diagnosed with a brain tumor. This August, we will celebrate 15 years since her treatment ended. Surviving 15 years after a cancer diagnosis makes Lily a long-term survivor. But Lily is just 16 years old. 

For an adults, the median age at cancer diagnosis is 66 years old. For children, the median age at diagnosis is 8 years old. That average adult with cancer--if they survive 15 years, it gets them to 81. For that 8 year old, it gets them to 23 years old. 

Of course, that 81 year old could live to be 100; and that 23 year old, could, too. But the 23 year old, is twice as likely to suffer chronic long-term side effects of cancer.  In one study in 2017, it was estimated that in just one year, cancer stole 11.5 million years of healthy life away from children. 

11.5 million years--you might think this number is ridiculous. But I can tell you first-hand, it might be underestimated. Cancer robs children not just of their lives but of their healthy lives. 

These things keep me up at night, friends. 

And often, I think even the people who know Lily's story intimately forget that childhood cancer is for a lifetime. Fifteen years into this world, we watch our fellow childhood cancer families struggle with the long term consequences of surviving. Lily will always have to be viligant about her health and even in her viligance, there could be surprises out of her control. We've watched helplessly while friends have battled kidney failure and secondary cancers. We are praying now for our friend as he deals with a medical issue following his own cancer treatment 5 years ago. 

Everytime I meet a newly diagnosed family and they ask what it is like 15 years later, I don't want to tell them the things I worry about. You can't worry about the toxic effects of chemotherapy or radiation when that is literally the only treatment option you are provided to save your child's life. 

This is the point in my blog, when I am laying out a problem, that typically say: "I don't know what the solution is." But, the thing is, this time, I do know what the solution is:

The solution is more research, more cures and safer treatments. 

In the 15 years we've been in this world, we've seen research transform and save children's lives. Targeted therapies that don't ravage and destroy healthy cells in the way chemotherpy does have been cures and game-changers for kids. Innovations in surgery have led to more total resections, while limiting surgerical damage. I know that research and science will be what saves our kids. 

For now, while science and fundraising and advocacy works its magic, I hope that everyone reading this can walk away with the awareness of what's needed so when they see a chance to give a dollar or ten or ten thousand to childhood cancer research (I recommend donating to Alex's Lemonade Stand Foundation, of course!) that they do it, knowing that cures are not enough for our kids. Our kids deserve survivorship without fear and full lives--11.5 million years and more of full, beautiful lives.