Survivorship and Stories (Day 33, Year 3)

I had the most interesting interview with a childhood cancer researcher today. Dr. Eugenie Kleinerman at MD Anderson in Houston, Texas (where Lily had proton radiation in 2007, that's what's pictured at the left, little warrior Lily) is studying how exercise could be used as a preventive and a treatment for doxorubicin chemotherapy induced cardiac myopathy. 

I know those were big words for the non-oncology readers. Basically "dox" is a really effective chemotherapy that damages the heart. In kids who receive this therapy, more than 50% will have some sort of heart damage which leads to decreased quality of life and even, early death. 

Dr. Kleinerman expressed how devastating this is to her--she cured their cancer and left them with heart disease. 

Pediatric oncologists have really hard jobs. 

I'll write about her research more specifically for Alex's Lemonade Stand Foundation--they funded her early work which set the stage for the study she is leading now.

In the interview, as always nearly always happens, I start thinking about the research in the context of my own walk with childhood cancer as Lily's mom. I used to never bring up Lily, unless we were discussing ependymoma (which is the brain tumor she had), but in recent interviews I've disclosed it. I am not their therapist, after all, so there aren't professional rules in place; plus childhood cancer has no rules. When I see the doctors talking, I see how personally their work affects them. The aftermath and current toll is written all over their faces. 

I said it before: pediatric oncologists have really hard jobs. 

I've learned many things in my walk with childhood cancer; the biggest thing is that human connection and sharing stories means something. It is not "oversharing" or "TMI" when you tell your truth. 

When I am fully honest with my story, I connect more deeply with whomever I am speaking with and then I get to hear their stories. Today, the discussion led us to what happens to childhood cancer survivors when they grow up--how do they navigate their healthcare in adulthood. 

For kids who had high-dose chemotherapy, constant cardiac surveillance is needed; but community doctors don't always have the bandwidth or resources (even in this wealthy country of ours). Some children with a history of cancer can have trouble getting health insurance--I think this is lessening, but I have no doubt it is still a reality for some. And frankly, a newly minted young adult is hardly equipped to manage childhood cancer survivorship on their own. They most likely don't have a life partner to shoulder the burden; they still need their parents or other trusted adult to advocate and support them. 

(I am 45 years old and really could use a healthcare advocate for myself somedays). 

This keeps me up at night--this worrying about Lily and what's next. I am so excited for her to grow up--but I am so scared about what that means. I need her to live to be 100 years old or more. I won't accept anything else. 

I don't know what the solution is, but I know if someone isn't working on it yet, someone will. I know that I'll begin to shift my personal focus into advocating for adult pediatric cancer survivors. 

And I know that a solution will come because families like mine shared our stories with each other, with you and with the incredible researchers working everyday for cures for their patients. 

Stories can change the world, I think. And I know they can cure childhood cancer, too.