During one of our recent chemo hospitalizations, Jim, Callen, Olivia and I sat down in the pediatric playroom for a round of Chutes and Ladders ™. The kids squealed with delight as Jim – who was frustratingly close to a win – was sent down a chute and back a good 20 squares, ensuring the game would go on (and on, and on, and on…!). “They ought to call this game leukemia”, Jim quipped: “you take a few steps forward, then get knocked back again”.
This summer, despite our every –other- week hospitalizations, we took many steps forward. In the physical sense they were more lateral moves, as Callen’s immune suppression and treatment schedule generally kept us close to home. Metaphysically, however, we journeyed far and wide.
For six weeks we watched him gain strength, speed, spirit and even some hair! During the first three “chemo camps”, as they were dubbed, we often joked that Callen seemed to be fighting boredom more so than cancer. By all appearances he was the healthiest one on the pediatric floor, zooming around the hallways using his IV pole as anything from a skateboard to a luge. He challenged his caretakers to Uno and bowling and was less than thrilled when a raucous game of beach ball volleyball or soccer had to be interrupted by anything that required sitting still.
The off treatment weeks brought even more fun - drum lessons and art projects, digging up dirt and riding on scooters, fishing and golfing. When counts were good, there was even the occasional play date, trip to the movies, or jump in the pool. In these moments we felt a million miles away from cancer. These precious days were our version of a summer holiday- and the absolute antithesis of what vacation generally conjures up. Instead of an escape from reality, ours was a return to one that we recognized. With each passing week, we s-l-o-w-l-y but surely exhaled. It’s not as if our attitude was one of complacency or hubris. We simply had just enough ordinary moments to sustain us.
But then, as with a flick of the game spinner, down the chute we went.
Nothing about that final August admission was the same. The hospital was at capacity, so we were placed on a different wing of the pediatric floor. Callen’s reputation preceded him and thus his new care team was eager to engage him in all things fun. But within a few short hours of starting the infusion, it was once again perfectly and painfully clear: he was fighting something far greater than boredom.
The side effects were the harshest he had experienced in nearly two months. His transition from rambunctious to incapacitated was so abrupt and unexpected that there wasn’t time to brace for the impact. After two days, exhausted, dizzy and weak, Callen quietly and simply stated, “Mom, I wish I didn’t have to have leukemia.” At that moment I knew: despite what is frequently offered as a well-intended consolation, and despite what I myself would like to believe:
This. ISN'T. All. He. Knows.
And for the first time since March I heard what it might sound like when a 4 year old tries to say, “I’m tired of fighting / hurting / feeling / living like this.” Seeing such suffering, and hearing even a hint of resignation to it, takes your breath away.
If there is a silver lining to having cancer at such a young age, it is that Callen cannot sustain a grudge. He doesn’t dwell -which is not to say that he doesn’t remember: his night terrors - inconsolable and incoherent screams about procedures and medicines - remind us that these experiences are indeed tucked away somewhere. But he is better able to transition completely, totally, 100% into a moment that’s good and enjoy it for what it is, rather than compare it to what it isn’t. Callen won't let leukemia usurp any more of his childhood than it absolutely has to.
Jim and I haven’t been as quick to move ahead. It has taken our adult psyches two long, emotional weeks to shrug off the residue of that one admission. There have been as many tears shed and fears voiced in the interim as during those first terrifying days surrounding his diagnosis. It has been a stark reminder of what he is up against and reinforced that there are no guarantees in life, or of life.
Today, after a welcomed week-long break from every form of treatment, we resume play. We are poised on the first rung of the Delayed Intensification phase – ready as can be for its concomitant ups and downs.
Game on, cancer!
