It’s happened again. Though Megan’s been in remission for going on three years now, I’ve stayed connected to the HLH and histiocytosis Facebook communities. I do it to pay forward the life-saving support I received when I was suddenly thrust into the “most wonderful group nobody ever wants to be in” (as some have called it). The group saved my sanity at a time that was in great jeopardy, and so if I can help some of the terrified and bewildered newcomers with a two minute message, it’s the least I can do. But as has happened far too often over the last three years, tonight I opened Facebook and learned that another precious little soul had lost his battle against that vicious killer.
“Baby” Leo was no longer a baby. A 5-year-old who loved Spider Man and nacho cheese Doritos, Leo had two bone marrow transplants in his young life, and spent more of that life in hospitals than at home. No one except those who’ve faced a BMT knows what horrific stress the process is. In addition to the very serious medical risks, you’re basically told to pack for the hospital for 6-12 months. How in the h%## do you pack up your life for 6-12 months? But BMT’s are only done as a last resort. When that’s your family member’s last resort, you simply go home and pack. That’s been baby Leo’s and his mother’s life for most of at least the last three years.
If it sounds like I know Leo and his mother, in a way I do, and in a way I don’t. I’ve never met either of them; they live in California, and I live in Arkansas. But for the last three years, I’ve followed their journey with both fear and hope. I saw pictures of a little boy’s signature thumbs up. I regularly “liked” his mother’s updates and commented encouragement from time to time. I followed his ups and downs, noticing that if the news was good, the posts were more frequent. When there’d been no news for awhile, I learned to dread the next update. I prayed to God for Leo’s complete recovery many times. Today, at 5:06 a.m., little Leo’s journey ended, and I find myself again sobbing for an innocent child I never met.
As grossly inadequate as it is, this is my tribute to Leo and his brave mother. I need her to know that her son, in his too-brief life, made an impact on a stranger. As I hoped and prayed for Leo, little Leo gave me hope right back. His thumbs up, smiling pictures were the pictures of a fighter. He survived challenges that those of us who knew how bad the bad news was didn’t think possible. And his mother…she was my hero. Always finding the positive, even in the tough times. Always fighting for her child, always working to give him a good life, in spite of the monstrous crap histio puts your body through. You are both my heroes. I am so very sorry for the loss of your Leo. It’s the world’s loss. What’s left now are the memories of an unforgettable little boy, and a faith that God has healed him completely at last.
“And tonight I will fall asleep with you in my heart.” –unknown