in my mind, we ran away

A year ago today, we woke up in our home as a family one last time. We got into the car together one last time, and we drove to UCSF with Caemon one last time. He was being admitted to the Bone Marrow Transplant Service and would begin his chemo conditioning regimen at 9pm. Before that, he had hours of tests and a fairly miserable scrub-down with a soap containing chlorhexidine, meant to remove as many bugs and outside germs as possible from his skin. His room from then on would be a clean room, one for which we would have to scrub in any time we left the hospital and returned.

Caemon was so cooperative that day with so many things. He brought his medical supply tacklebox, having left his medical supplies at home (even these had to be fresh). He had a chest x-ray and sat so very still, and while that dreadful bath had him protesting wildly, he happily changed into comfy clothes and took a nap with Jodi on the bed while I decorated his new room with trees.

But I can tell you that in my mind that morning, I wasn’t driving him to UCSF. When I woke up early, and he was still sleeping, I imagined staying home with him forever. I dreaded what was next, knowing the transplant itself could kill him. Every cell in my body wanted to hold tight to my little family snuggled up in our big bed and just never go. I wanted to see his hair grow back, watch him turn the lights on and off on our Christmas tree, dance with him free of tubes and hospital beds and worries about platelets. We had spent the last three days baking his favorite pumpkin muffins, going out at night to see Christmas lights on houses (in fact, one we visited all three nights we were home), lighting fires in our little pellet stove, and simply being a family with our own agenda, our own rules, our own space. If Caemon wanted to eat nothing but tuna sandwiches for an entire day, that was what he had. If we wanted to stay in our pajamas all day long, we did. We made messes, cleaned them up, hugged and danced and snuggled and played and read. It was bliss, and none of us wanted to leave it. In those moments, with our son the closest to leukemia-free he had been in who knows how long, it almost seemed possible to just forget about the hospital and just take our lives back.

But it wouldn’t be possible without a transplant. We all knew that. We all knew the leukemia would return with a vengeance in no time if we didn’t go through with it, but the instinct to go anywhere but that hospital was strong in me that day, and I fought it over and over again as we packaged all of Caemon’s clothes in giant ziplock bags, placed his toys in sealed plastic tubs, packed up our own suitcases full of hospital mom clothes, and drove to San Francisco.

That night, after the tests and the bath and after “Sad-Sad Boingy Tube” got hooked back up to the IV pole, and after Caemon and Mama had a nap, and I decorated the room with trees and lights and as much magic as I could muster, we sat together in his room, and we gave Caemon what he affectionately called his special BMT present: a little Christmas carousel that lit up and played music, something he had admired countless times the year before both in a store and in a book we had.  Caemon loved carousels, so to have one of his one was pretty fabulous. He snuggled up by himself in his bed, turned it on, and lost himself in it. For nearly an hour, my son gazed at the lights and mirrors, listened to the music, and watched the little animals spin around and around. When the little bears riding one of the horses would come around, he would kiss his fingers and gently touch them. He did this over and over, speaking softly to the bears. He was a little boy, mesmerized by a holiday toy, and I found myself transfixed by the beauty of the moment, yet saddened too, for beyond the innocent smile and wonder, there was something else in my son’s eyes–a sort of resolve that came with being back in the hospital, hooked back up to tubes, submitting to treatments. To see a sort of knowing wash over him, to see him visibly coming to terms with leaving home and living in the hospital again broke my heart.

Thinking back to all of that now is so hard because I know what he was about to endure, and I wonder if he was anxious about it. I wonder if he had any idea what was to come. I don’t know. I know that it was scary for all of us and that we maintained more hope than I ever imagined could be mustered, that we did everything we possibly could to save our son. A year ago today began the greatest fight of our lives, and while I know I wouldn’t have changed anything, I still sometimes wish we could have just stayed home, lit a fire, and snuggled up on the sofa with a big stack of books and our beautiful, beautiful boy.

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the tiniest beacons

Two nights ago, Caemon had the tiniest of blips on his white blood cells. Since his conditioning, his white cell count, along with his neutrophils and other forms of white blood cells, have shown up on his readouts as < 0.1, or, in other words, pretty much nothing. That’s what the conditioning chemo is meant to do. It obliterates the marrow and all these cells so that the new marrow can take over. The blip a couple of nights ago brought his white blood count (WBC) to a meager 0.2, but it was just a blip. It was an indication that things might be percolating, or perhaps that there was something there that could do some percolating. Yesterday, the count came right back down to 0.1, but it had been nice to think about.

Yesterday, the medical team came in smiling for the first time since we’ve been here, really, but not about the blip. When they entered, our boy was standing on the bed holding onto me and talking–well, protesting their entry, actually, and demanding I not talk about him–but it was talking they hadn’t heard. They were beaming, and pleased his liver numbers were decreasing, that he hadn’t had a fever in nearly a day, and that he was up and had the energy to be surly and objectionable. I was too, for as challenging as a cranky crocodile can be, it’s better than a lethargic, apathetic, constantly sleeping crocodile. A crabby croc is one with fight.

Last night, Caemon needed blood and platelets, had a bit of a fever, and was having some pain that prevented him from swallowing again. The need for blood certainly wasn’t unexpected, as he receives blood products every day, but seeing him in pain again and seeing him start to retain fluid again bothered us. His practitioners had it under control, though, so I left to get some sleep, leaving Jodi to stand watch over the boy. He had a restless night. Neither of them slept well.

Perhaps growing cells makes it harder to sleep. This morning, our son had both neutrophils and white blood cells show up on his complete blood count (CBC). His neutrophil count was 40. His WBC was 0.3. While these are still just tiny jumps, they are cells that will grow into an immune system in Caemon’s body. They are his first signs of recovery. A little more good news came in the form of lower liver numbers–the lowest they have been in some time. I cannot begin to explain the sort of hope this fosters in me.

We still have a long road ahead of us, and we can’t know until we’re on the other side of this whether we have found the darkest of the dark days or not yet, but in this moment, those sparks and flares sure do look like traces of dawn.