Mia’s cancer diagnosis changed our lives forever.

Those in the childhood cancer community see this phrase often. But it really is true. We can’t un-see what we have seen. Nor would we want to. (We wish Mia never had cancer, but we are so grateful to know and be a part of this amazing community that we knew nothing of before.) It was not just what we saw of Mia’s experience with cancer, but every child we saw, met, or followed.

Mia was diagnosed ERMS in Dec of 2019.  ERMS (embryonal rhabdomyosarcoma) is a soft tissue tumor that begins in the muscles and is most common in infants and young children. She (and our family) endured 11 months of cancer treatment (“42 week” VAC), moving away from home to be near the hospital for a year, and COVID part way through which just made a mess of everything.  Nearly one year ago today Mia had 8 more weeks of treatment left.  At this point she knew well what each VAC cycle would do to her.  She would hide her tears from her nurses and doctors because she didn’t want chemo anymore, and she didn’t want them to see her like that.  She was having mobility issues due to neuropathy and getting weekly serial castings to help counteract the effects.  She needed regular transfusion of red blood and platelets.  We usually spent 3-4 days a week at the hospital for something, blood, PT, casting, labs, etc. 

Mia is the youngest of our three children. All three kids were asked to do things no child should be required to do. All three grew up in ways many young adults haven’t experienced. For Mia in particular, she went from a cute fun loving 5-year-old before diagnosis, unable to walk and in extreme pain at diagnosis, to now a 7yr old survivor (going on 17yr it seems) who is still very much a kid but has the capacity to do very grown-up things, without blinking. I don’t know that we fully understand the impact on our kids yet. I think difficult experiences build character, but also leave scars.

Mia is now 9 months cancer free, what an amazing change in 9 months!  Mia was not prescribed post treatment maintenance chemo, which is a blessing in many ways, less hardship and pain for her. Because of the location of Mia’s cancer, and the effects of chemo, she has some mobility problems. She still sees PT on clinic days and still wears her leg braces on tough days. A short walk at the park is easy for most kids, but a challenge for Mia.  Also, Mia had many transfusions during treatment. They were wonderful, I would say lifesaving. However, the high number of red blood transfusions gave her hemochromatosis (high iron levels in organs). She has been doing phlebotomies (blood draws) every 3 weeks post treatment in an effort to bring her iron levels into a better range. Then there are the psychological parts of post treatment. Post diagnosis includes many years of scans of course, which alone carries enough anxiety for our whole family The fear of relapse, the knowledge of other kids/her friends who don’t survive, scary thoughts day and night. BUT kids are so amazing, so tough, able to endure so much and still smile. Mia is so wonderful in that way, so inspiring.

Childhood cancer research is so important because it saves kids’ lives. I mean what other reason do we need? As a nation, why would any of us not want to save kids? Even if it is “just” 1 out of 285, each of those “1” kids must be saved so they can grow up and find new cures, make their own families, lead people, become president, live to be old. There are lots of wonderful causes out there, we can save the planet, rescue animals, live healthier, but without our kids what is the point.

I hope that a few people who knew nothing about childhood cancer see in September a social media post, or a fundraising walk, or a short clip on the news and decide they want to learn more, and ultimately help! Our family knew nothing before. I vaguely remember seeing smiling bald heads in a St. Jude commercial, in other words I knew nothing. The small childhood cancer community can’t bear the full weight of advocacy, research, and cures. We need a nation as knowledgeable about gold ribbons as they are about pink ribbons.

-Nathan Stabile, Mia’s Dad

Thank you to the Stabile family for sharing Mia’s story with us.

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