Today we are home. Yesterday was Christmas, and we were finally all together at home again, the four of us, after nine long days apart. Charlie just got home from a lengthy hospital stay, just in time for Christmas (it was really coming down to the wire). The children could wake up Christmas morning in their own beds, and race to the living room to find that Santa had come. We could all open our presents and cook brunch and watch Christmas movies and listen to the rain falling outside, cozy at home and very much together. In so many ways we are very very lucky.
Today Charlie looks today like a happy, healthy little boy. As I mentioned in previous posts, the doctors were able to put his Leukemia completely into remission within a couple weeks of treatment. All the subsequent treatments (over the course of the next two years or so) are meant to hunt down and eradicate the teeny tiny remnants of Leukemia hiding here and there in his body, in order to permanently prevent relapse down the road. So for the past month Charlie has been essentially cancer-free, which means he no longer has to deal with the bone pain, extreme fatigue, and the generally yucky feeling that comes with having Leukemia. Now that he isn’t in pain any more, his personality has come roaring back. He is goofy and quirky and hilarious most of the time, a ray of sunshine and joy who lifts the spirits of all who come into contact with him. He’s also been gaining strength, and making real progress on his mission to walk again. He’s plump and rosy-cheeked and precocious. These days he really resembles a happy little puppy, crawling and wiggling around the house, hopping up on my lap for a belly rub, happy to be alive.
We have officially entered the second phase of treatment, called Consolidation. I’m not sure what exactly is being consolidated, but I do know that this phase is supposed to be an intense one. It lasts for eight weeks or so, and during that time Charlie will have to endure multiple sessions of chemotherapy (the medicine kind, not the radiation kind), and stay at the hospital for at least four different stretches so the doctors can monitor him while the chemo works its way out of his system.
On Dec. 13 we entered the hospital for the first of these four stays. Each time we go in for a session like this, it’s always a bit of a bummer because we know that the chemo is going to knock Charlie down a bit, and erase some of the progress he’s made. The drugs make him feel pretty bad, sapping his energy for a while and bringing on waves of nausea. It’s only temporary until the medicine is out of his system, but it still isn’t easy to watch him suffer. Personally, there’s a part of me that feels like it’s wrong to give my child medicine that makes him feel sick (it’s not the cancer making him sick right now, it’s the treatment), almost as if I am choosing to bring on his suffering. However I also understand that we have to proceed with this course of treatment in order to actually cure the cancer. If we stopped treatment early, in order to spare him this discomfort and expedite his return to normal kid-life, the cancer would definitely return in short order. To make it worse, if we leave the cancer cells alone and allow them to rebuild their population, they will adapt and become resistant to treatment, since only the strongest and most wily of the cancer cells have survived these first rounds of chemo. If those survivors are allowed to reproduce and spread, they’ll create a new generation of super-cancer that would be impervious to the chemo. So we have to see this through, even it makes Charlie sick.
This most recent stay was a long one, nine days. It was supposed to be four days, but the chemo just wasn’t leaving Charlie’s system quickly enough, so we had to wait and wait. Predictably, the chemo made Charlie feel gross for a few days. Since the oncology unit practices very strict anti-germ protocols, Charlie isn’t allowed to leave the 5th floor of the hospital during his stays, so we can’t go outside for a walk or explore the hospital or take him to the cafe. Unfortunately Charlie’s life becomes a bit one dimensional when he’s admitted for long stretches. But we try to mix it up however we can. As Charlie slowly got his strength back and started to feel better again, as the chemo left his system, we set up a play mat on the floor of the hospital room and played with cars and puzzles. We watched the Cars movie a hundred times, and watched the hospital helicopter take off and land outside our window. We took a stroller walk around the 5th floor and tried to find all the Christmas trees (we found two).
During that time, as we creeped closer and closer to Christmas, we started to get nervous that we would need to spend Christmas apart. During the hospital stays, Erica and I alternate who stays at the hospital and who stays home with Jack (he isn’t allowed to visit Charlie due to Covid protocols). We really wanted the Christmas magic to be there for the boys this year, we really wanted them to be together. As the big day approached, and the doctors still told us we’d be there “a few more days”, we were working out the logistics of who would stay home Christmas Eve to wrap all the presents and make sure Santa came.
Then, the day before Christmas Eve, they told us we can go home. It was such a narrow window of home time – we return for the next chemo session tomorrow, on the Dec. 27th – but it just so happened that we got to be home right on Christmas. It timed out perfectly, four days at home that landed perfectly at Christmas. We are so grateful for that time at home with these boys. And to top it all off, Charlie looks better than ever, a happy healthy little puppy. After just a day at home, he had bounced right back strength-wise. We know that the next chemo session might last another nine days, and that it will likely make him sick for a little while. But now we also know that he bounces back, that he’s resilient. We used to struggle with administering his daily medicines; now that’s just part of his routine. He used to struggle to sit up on his own; now (after much practice) he can pretty much stand up on his own again. Charlie has demonstrated that he can do hard things, that he can get through the unpleasant parts, which is a skill that will transcend this stage in his life and allow him to survive (and hopefully even thrive) through all the difficult phases that come throughout a long life.
At least for this moment, the day after Christmas, Charlie isn’t dealing with anything particularly difficult. Today there’s no pain or yucky feeling or chemo. Today he’s surrounded by Christmas presents and people who love him. His only job today is to crawl and wiggle around the house, to play and laugh and eat, to live a care-free lifestyle, the way a three year old should. We’ll go back to the hospital tomorrow, but today is all about fun. Every life is full of these oscillations, where one day is fun and another is hard. We all have to learn that when it’s time to work we must work, and when it’s time to play we must stop working and go play. It will never be all fun all the time, but if we are resilient and clever, hopefully it won’t always be work either. I wouldn’t expect a three year old to understand this lesson, but Charlie has miraculously already learned it. His joy for life is contagious, even when he has to do hard things. I can’t think of an individual better suited to deal with the difficult road ahead than Charlie.
