At 6:17 p.m. last Wednesday, I gave thoughts and intentions to St. Jude and Mary. I took a deep breath and looked at Ky and watched as he turned his eyes away from my tears, he wasn’t shocked, but it wasn’t necessarily something he was ready to see either. Then I said thank you, over and over, to the magical man in the Netherlands who graciously gave a liter and a half of his bone marrow to my son. I verified with the nurse that I was about to press the correct button, then I pressed start.
I pressed start on a chance to put the nightmare of AML behind us. AML might always be like that awful neighborhood dog that got off his leash once and bit Ky, hard. Now, no one in our family dares walk by the metaphorical dog slowly, even if the chain is reinforced and no one thinks the dog will get loose again. Maybe we’ll get away from it, maybe we won’t. Our whole family wants to run because we think we can outrun it. I pressed start to give Ky that chance, to give us that chance.
I pressed start to honor the work that Ky has done thus far: an early pick-up from school that turned his whole world on its head – he didn’t go home for four weeks that time, two intense rounds of chemo, two pretty gnarly infections, seven plus weeks in the hospital, remission, a bridge chemo program at home to hold him in remission. He’s put in work. Damn it, he deserves this chance. He’s more than earned it. I pressed start to honor Ky.
I pressed start for a five hour infusion of a substance that, on a table, would look like ketchup – but in a giant bag, hanging on a pole – it takes on a serious mystique. It was a quiet five hours. We had very few lights on for most of it. Nurses warned me it would likely be anti-climactic; they haven’t yet mastered this highly emotional mama. No bells went off, no music chimed overhead, there was no ticker tape parade. Ky wore a faux-tuxedo shirt all day and into the night, which made me smile each time I looked at him; it was the perfect shirt for the occasion. It was silly and Ky-like, but it let me wonder if someday he’ll go to a prom or get married, he’ll wait for his partner at the end of an aisle, ready to make a promise for a long life together. For now though, there was a pickle boy, his savage mama, and a giant bag of marrow. How much does hope weigh? In this case, 3.3 pounds. But I pressed start for an infinite amount of hope.
I pressed start as were at the base of what we’ll call Mount Awful. The prize for reaching the summit is engraftment, when the donor marrow settles into its new home and begins making blood of its own in Ky’s body. Ky’s conditioning regiment is cumulative – the toxic built as we went along. Fumbling toward awful, we couldn’t have known it would be quite this bad. In fact, we hadn’t even reached the base of Mount Awful when his cells went in. When his numbers didn’t dip as quick as I thought they would, the attending physician assured me that the two chemo-therapies were ablative; any fast-growing cell was a target for the duo. The result of cumulative and ablative are a combination that no one, especially not a child, should experience. His body is pissed. Add to that mix a bunch of new cells that, with all the best intentions, are trying to find their place in a whole new world (Ky’s body). Ky’s body doesn’t entirely trust the new cells to not be up to no good, so – it’s suspicious. Pissed and suspicious make for tears, his and mine, vomit, mostly his, a high fever, him. and sleepless nights, me. I pressed start, knowing it will be worse before its better.
I pressed start and dove a little deeper into being a medical mama; a mama who has to walk a delicate line between just wanting to snuggle with my baby and forcing myself to help him negotiate this world. A mama who can no longer truly hear the dinging of the alarms on his IV – they’re more natural than a television in the background at this point in my life. Alcohol wipes have become smelling salts for me. When one of those 2×2 packages is opened, even if I’m in the bathroom showering, I can smell it; something is wrong, they’re accessing his central line. A mama who chooses to participate in rounds, with Ky’s blessing, so that I can learn as much as possible about what’s going on. Slowly, I’m picking up their vernacular…and with the confidence of a stone rolling down a hill, no choice but to gather speed, I’m learning to speak their language, enough to watch for trends and provide data that I can, when I can. I pressed start, he’s counting on me to be his voice.
How did I end up pressing start? That’s the silver lining; for me, a moment of beauty in this disaster. Earlier in the day last Wednesday, when we knew Ky’s cells had landed and were being prepared for his body, Colleen asked if Ky wanted to press start on his new marrow – “Lots of kids your age love doing that!”. Ky looked up at her, over to me, then asked “Can my mama do that? I want her to press start.”