“It’s bittersweet, more sweet than bitter / bitter than sweet / it’s a bittersweet surrender…”
We were up early Tuesday morning to be at Maine Med in time for Ky’s procedure. We waited until the last possible minute to wake him. We were literally out the door three minutes after his feet hit the floor. It was early, so it was just the two of us. Bill walked us to the door, he and Lou would join us later, once Ky was settled into his room after his procedure. No sooner than we’d gotten out of our driveway, Ky started to cry. “Don’t take me back, Mama. Please.” I told him I had to – that this was part of the deal. We had to get through this next round of chemo, then we’d have a better plan – a better outline of our next few months. I put on sunglasses, less to shield myself from the sun, more to shield my son from my tears. “Don’t you get it, Mama? Kids don’t grow in hospitals. I’m not going to grow there. It’s not…natural.” There was no silver lining, no bright spot to be found this morning and we both knew it. “Mama, I need my sister. And Papa. And our cats. And the dogs. I need a yard, Mama.” His attempt at reasoning gave way to quiet sobs. By Windham, thirty minutes from our house, he’d resigned himself to the fact that we had to go back, but he was going to catch every single site he could on the way.
Shortly thereafter, “Bittersweet” by Big Head Todd and the Monsters came on. “I *love* this song, Ky!” I launched into an explanation about why, about the nuance in the lead singer’s voice, the nostalgia that the opening chords always inspire in me, the story the song seems to tell, why it matters that the word bittersweet gets split apart. Ky heard the the chorus and smiled, “I know this song. You used to play it all the time. I like it too.”
We arrived at Maine Med in time to watch the city start to wake up before us. We were close to time, but we opted to watch life perk up from our perch on the 8th floor of the parking garage. “I don’t want to go in, Mama.” His protests got harder to refuse as we got closer. I didn’t either. I knew what was waiting for him. A bone marrow draw, a spinal tap, chemo directly into his spine…within the first 90 minutes of our arrival. Then he’d be treated to regular chemo through his line. This round is an aggressive one. Since we knew he was going to need a bone marrow transplant, Ky’s doctors opted to skip the traditional second round and go straight to the more intense third round. Shorter in duration (only six days), but mighty in awful. His oncologists told me to ready myself. He’d be sick – both chemos he would get were considered ‘moderate’ in terms of causing nausea. Two wrongs don’t make a right, but two moderates seem to make an awful. I’d also been told that one of the drugs can be challenging from a cardiac standpoint, so he’d need to be monitored carefully during infusion and for an hour afterwards. Some kids also get fevers. Bittersweet, more bitter than sweet.
Waiting for us on the other end of that day, though, was something beautiful. Ky was given the opportunity to make a wish through Make-A-Wish Maine. His fairy godmothers met with us as a family. One filled out paperwork with Bill and me, the other stayed with Ky and Lou and let them dream big. We’ll find out shortly if and how Ky’s wish will be granted – but for now – know that it was given a whole lot of thought – in a way that only Ky could. As the last few days have gotten increasingly challenging, he brings up his wish, “Do you think they’ll grant it, Mama? It seems kind of like something they might not be able to grant.” I think it’s just the kind of wish they’d love to grant. Bittersweet, more sweet than bitter.
The next day our spirits were lifted further by the news of Ky’s remission. I hoped, but I didn’t dare let my hopes get to high. Cancer has taught me to keep two feet on the ground at all times…more often than not, two feet and two knees. It’s one step in his journey, but it’s such an important one. As I mentioned on Facebook, we will finish this round of chemo and then, if a donor is identified, move on to the bone marrow transplant. He will still need that because that’s the best way to be sure that there isn’t leukemia hiding out somewhere, waiting. I’m telling myself it’s not a better or worse path on this journey, it’s just a path. Bittersweet.
Bill, Lou, and I were ecstatic to hear the news. What a victory! Having been reminded that hospitals are no place for a boy to grow and knowing that soon he’ll be confined to his room, I took him out for a walk. “Are you excited to be in remission?!” I asked Ky, as we lay in the grass outside the hospital, just the two of us, soaking up the sunshine. He looked up at the trees, then over at me, “If I get too excited, they’ll find bad news to give me, Mama.” Bittersweet…more bitter than sweet.
He’s spent the last two days as sick as I’ve seen anyone. I spoon-fed him eight and a half bites of applesauce yesterday, but that was all he ate. He has enough fluids going into him now to keep him hydrated and going, but for a mama who thrives on making sure people are fed, and hopefully then happy, this is a fresh layer of hell. The more he sleeps, the less he’ll remember, his oncologist told me yesterday. The current issue is that this mama doesn’t seem to sleep…and she’s going to remember. Every. Last. Detail. And while I’m glad he’s sleeping, the stillness of my never-still-boy is hard to watch. He has a pounding headache that is made worse by the amount of retching he’s doing. He refused so many medications that would have helped him during the first round of chemo, but this time – he’s not. He can’t. It’s a bittersweet surrender…