Born with Sickle Cell Disease

Last September, my brother underwent a trial treatment at the University of Illinois Hospital in Chicago to expel his Sickle Cell Disease blood from his body. How do they do that? you ask. Well, they find a match and exchange that person’s blood cells for his own. Pretty simple. They flush his body with the new blood, and that blood takes over and his body starts producing the non-disease blood as its own, essentially.

But things didn’t work out that way. My sister, who was the full-match, was too young for the pre-procedure. And my step-mother, my brother’s biological mother, was only a half-match. But we went with the procedure. It can work with a half-match! they insisted.

But over the next 6 months, my brother’s body has been rejecting his mother’s blood cells. It’s called Grapt-Versus-Host Disease (GvHD) and there’s no cure and no real treatment for it. So what now? 

I honestly don’t know. I’m sure my parents feel like they’ve done the wrong thing sometimes. This is their baby. They wanted to give him the best chance! But instead, they were naive to trust these scientist doctors who ruthlessly take a life and treat it as an expendable experiment. They were too young and foolish having him out of wedlock, too helpless and unstable to handle the weight of a child with a terminal illness. But would that really be fair to say?

My step-mom and dad didn’t have it all together in the beginning and maybe they struggled to figure things out in the middle, but don’t we all? They never gave up; they never backed down. They always learned, and grew, and were willing to change for the better. They always stood back up. And 21 years later, their son is still here, plus 3 more–not to mention the bustling family business and touching countless lives throughout the community. I would say that’s a lot to be proud of. But what would I say about my brother?

To be honest, I’d say it sucks to be 21 years old and spend most of your waking hours recovering or in a boxed and beeping hospital room, still recovering. It sucks for my grandmother to worry about her grandson and for my nephew not to see his father for weeks at a time.

It sucked to realize that my brother was much thinner than before because he had lost so much weight, and when he didn’t look like himself for months because the medications had caused a terrible reaction in his skin. It hurt to notice that my dad wasn’t himself because he was preoccupied with thoughts of possibly losing his first-born son and namesake. It hurt to witness my step-mom grow anxious, weary and quiet. But it was especially awful to see defeat in my brother’s expression and hear the exhaustion in his voice. And I was heartbroken. But too stubborn to let him see me cry. But I took a deep breath, and I prayed more than I can remember. And call me insane, because when I stand up, I found hope.

It’s a tough situation, but I don’t want people to feel sorry for me or my family, or my brother. I don’t want my parents to feel like they’ve failed their children. I don’t want anyone, not even them, to believe for a second that my parents are to blame. Because I don’t feel sorry and I don’t want them to feel sorry. Because they’re not to blame. Sometimes bad things just happen, not because people are evil, but because that’s the horrible reality of the world we live in. And we’re all only human.

But still, that crazy part of me remembers that God works in mysterious ways and that His wisdom, knowledge and power is boundlessly greater than ours; that exactly when we are barren, feeble and utterly debilitated, He remains strong, for us. And I remember that Jesus waited until four days after Lazarus was cold dead (when he could do nothing for himself) and He literally (and instantly) raised Lazarus out of his grave. So yes, that crazy part of me keeps praying and asking people to “believe!” And “pray!” That nutcase in my heart keeps saying–hey, if already you’re down, then get on your knees and talk to God. But remember to get back up! Because we are more than conquerors. That maniac in my head keeps telling me that if we pray and believe, unwavering, that we will overcome. And it might not make logical sense, but I’ll believe it.

So will you believe with me? Will you pray for my brother and my family?

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