Monday, June 24, 2013

The Real Marathon: When Cancer Comes Back

I signed on to blog about insomnia and midnight snacking. It's 2:47 am and I just ate a spoonful of raw cookie dough. I thought I'd blog about healthy alternatives, since midnight snacking seems to be my thing.

Then I checked my email.

I haven't blogged all that much about my daughter's cancer here. Many of my readers know the story. Many of you followed it when it was unfolding. Others have learned of it since. And while I'm happy to tell and retell, I don't want to bore you.

My girl smiling through chemo!
But when I signed into my email and read a Caring Bridge update from a little girl who has now relapsed with AML for the second time, I couldn't bring myself to write about cookie dough.

My daughter was three when she was diagnosed with Acute Myelogenous Leukemia (AML). About 20% of kids with leukemia have AML. It's more aggressive and harder to treat than the form of leukemia most kids get (acute lymphoblastic leukemia). We were given 50 / 50 odds of chemo working. 50 / 50 odds of survival.

AML treatment is tough. The doses of chemo are higher than the doses kids receive for other types of cancer. It is very, very intense. Some AML kids go through bone marrow transplant (BMT) right away. My daughter did not. Her subtype was deemed "intermediate risk" so she would only go through transplant if her brother was a match. He was not.

He may not have been a match for bone marrow, but he was darn cute growing up in the hospital!
Even for the kids who go through chemo alone, rather than BMT, the chemo is very, very intense. The immune suppression is severe, just shy of that achieved for BMT. The potential for permanent damage to the heart or bone marrow is high. As a result, the duration of chemo is short. My daughter went through 5 consecutive rounds of chemo, each around a month apart. After these 5 rounds, the body cannot easily tolerate more chemo, more poison so to speak, so there is no "maintenance" phase that lasts for years as in other leukemias and solid tumors.

AML chemotherapy is so intense that most kids require a feeding tube. Thankfully, our kiddo only needed one for a short time.

This is why I named this blog "The Cancer Sprint". When we were in the hospital for 6 months straight, we constantly compared the process to a marathon. Even the doctors used this analogy. Funny, since neither my husband nor I were runners at the time. But once we were out of the hospital, even when we were going back for weekly rechecks, I realized that if our daughter was lucky enough to not relapse, 6 very intense months was, in some ways, much easier than years of less intense chemo. Or chemo and radiation. Or surgery and chemo and more surgery. You get the idea.

Our daughter's treatment was more like a sprint. One of those really awful short runs, maybe even a 5K, where you feel like you are gasping for air the entire way. You get side cramps. Your legs burn. But then it's over and you're grabbing a coffee and heading home to read the paper and do laundry. 

So when I read that the little girl who relapsed for the second time, I thought about a marathon. Her first treatment was very similar to my daughter's. That awful sprint. Then, like most kids who relapse with AML, she did so very early, within a year off treatment. At that point she had a bone marrow trasplant. Now, 18 months post-transplant, she will face another. She has been given a 30% chance of survival. She is five.

Cancer breaks my heart. It rips it into a million pieces. Not a day goes by that I don't appreciate every extra moment that that horrible six-month sprint to remission has given us. And not a moment goes by that I don't hate everything about what cancer does to children and their families.

My daughter is alive thanks to research that has advanced the way we diagnose and treat AML. Much of that research has been funded by The Leukemia and Lymphoma Society. There are moments when I feel so guilty for continuing to ask for donations. Then I read about a kid facing their second relapse. I remember that for every child that survives AML, there is another who won't.

This is why I train. This is why I wear a purple shirt when I run. This is why I will continue to come back year after year, event after event, and ask for donations.

So far, I've received $50 in donations toward my current fundraising goal of $10,000. If you are able, please consider making a donation on my LLS fundraising page.

Also I am having a yard sale this Saturday morning and Sunday afternoon and I am planning a Fall 5K fundraiser. If you are interested in coming to the yard sale or sponsoring or volunteering with the 5K, please let me know in the comments section below and I will respond below or directly in an email.

Together, let's make "Someday" today and End Cancer together!

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