Mile #18 in honor of Alice

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Story

Alice was diagnosed with pre-surgical stage 4 hepatoblastoma at 18-months-old.

A 1 in a million diagnosis for our little girl, who didn't even have the few risk factors that are known for this cancer (being a premie, being a boy, or having a family history of GI disorders).

Almost half her life has been spent fighting a monster. But it was a monster we couldn’t see, didn’t understand, and could not explain to her. I imagine how often she wondered why we kept bringing her to terrible places. Places where strangers hurt her and gave her medicine that made her so sick she couldn’t get out of bed. I wonder if we did everything we could. I wonder if she hated us for it. I walk around with those questions. I sleep with them. They are a part of me now.

A month ago, her life was saved by a liver transplant. Our daughter giggles again. She always puts her shoes on the wrong feet. She loves birds and asks us why they are ‘up high’. She likes hide and seek, but doesn’t understand it, and stares directly at you in wide open spaces while you look for her. She plucks annoyingly at the itchy hair growing back on her scalp. Sometimes, she goes a whole week without seeing a doctor. She is curious, joyful, and empathetic. But she is here because someone else's child is gone. And that duality reminds us that things in life are very rarely, if ever, "good" or "bad". Sometimes things just are.

The day after her transplant, I went for a run in a nearby park all the nurses had suggested to me. It’s beautiful. At the end were what seemed like miles of steps that are built next to the helicopter landing pad and head up to the hospital, that I normally wouldn’t attempt. I hadn’t been able to breathe well enough to do intervals in months. But that day, I did them. And I felt like the surgeons had removed more than just my daughter’s tumors; but the lump in my chest. The weight in my lungs. I could breathe again.

So that day, while I was climbing those steps, I noticed there was a crowd around the helicopter. But it wasn’t an organ drop off ride, it was a take off - an organ collection to be delivered somewhere else. And the family was there. And in my most fierce, well-rested, deep breathing moment, they could barely stand. And I remembered that these carefree moments, these weightless breaths that let me run again, much like my daughter’s liver, were donated.

We would love to have you donate a mile in honor of Alice, but also for her donor, who lives forever inside of her. And the family that made the decision to save our girl.

We look forward to a world where you wouldn't make this journey, because no one would have any pictures to submit to you.

Love,

The Scharphorns

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