“…And God bless leukemia.”
This final supplication offered by Callen, seemingly as an afterthought, caught me totally off guard. It came at the end of a long litany that was otherwise adorable, predictable and reflective of the day’s events: prayers for relatives, friends, pets, babysitters, superheroes, “the whole world, the whole universe, everyone who is a human”, mommy’s hair (which he wanted to bless because “it seemed dry”) and Santa Claus.
It was late in the evening, Callen’s bedtime routine having required more time and encouragement than usual. His lips were cracked and bleeding, his gums raw and blistered from the newest chemotherapy and its newest side effects. He cried at the sight and sensation of bloody drool oozing from his mouth. He asked for Band-Aids for his teeth: I offered kisses, mouth rinse and lip balm instead.
I hardly saw these final moments of his day as a prelude to “God bless leukemia”.
Had we not just lived through the same fifteen minutes? Or the same last week, for that matter?
We had been discharged home the day prior from our first round of inpatient chemotherapy. Having finally made counts after a two and a half week stay of treatment, Callen was officially done with the consolidation phase. Within an hour of the results being reported he was put to sleep for a spinal tap, spinal chemotherapy, a dose of intravenous vincristine and a bone marrow biopsy. Then we were ushered to the hospital for initiation of his next phase.
Interim Maintenance. A 63-day stretch requiring hospitalization every other week for continuous chemotherapy. The process is laborious and meticulous: six hours of pre-hydration, twenty-four hours of continuous high dose methotrexate given at a potentially lethal dose, eighteen hours of allowing every cell in his body to marinade in the toxic concoction, then a rescue antidote every six hours starting at hour 42, and ending only when the level of methotrexate in his blood is nearly undetectable. His survival depends upon a carefully orchestrated dance to maintain the margin between life saving and life-threatening. The infusion progress is checked and rechecked, the rate increased, decreased, maintained to exactness. Every drop of urine made is collected and analyzed. Blood draws are timed to precision. Fluid rates are adjusted to optimize his system’s pH, potentiating the drug effects. The IV beeps in continual protest at the bubbly bicarbonate fluid that it senses as air in the line. The lines are thumped, thwacked, stripped, stretched to rid them of these bubbles and quiet the cacophony.
During those critical 18 hours, as his body is “bathing in a poisonous slurry” (as it was described to us during informed consent) he seems to defy the very process at play. His appetite is enormous and feeds an energy that is boundless, as if he is able to harness every bit of life being leeched out of his cells. The typical sedating effects of the anti-nausea medications are no match for his need to get out of that hospital bed! I cannot keep him or his enthusiasm restrained – not that I try very hard, but the tubing running from the multiple IV bags to his chest is but a few feet long, so there are practical limitations to consider. We pass the hours that day playing beach volleyball in his room and soccer on the hospital rooftop.
During those same eighteen hours, Jim and I try (in vain) not to think too much. About what is being done. About how it was figured that this much medicine kills cancer, but this much kills its host.
It is now day three. Callen begins to give in to the process. Ironically, this is once the rescue medication has begun. The chemo is indiscriminately toxic to every cell in his body. The antidote provides a crucial nutrient that only non-cancerous cells can harness. The resuscitation demands much of his little body. He grows tired. Bored. Lonely. Sick. Homesick. Sullen. Sad. The novelty of the helicopter landing just outside our window (at all hours) has worn off. He is exhausted, exasperated. His reflex to hit the call button the second that IV alarms has grown impressively quick. There is more than a trace of annoyance every time he calls out “it’s beeping - again”. There is no more sport to be made of perfect long distance aim when peeing in a jug. A local celebrity stops by for a visit and autograph. Callen turns his back to the entourage and stares out the window. He will not engage. Game over.
It is day four. The pediatric oncology team, some dozen individuals strong, makes its rounds. His methotrexate levels are falling - from 79 to 0.58 to 0.23. Each member of the team wagers on the next result. Callen interjects and makes his stance clear: he is going home that day.
Some hours pass until that next result is in. Thankfully, Callen (and one giddy third year medical student) is correct.
We are going home.
We capitalize on his temporarily inflated immune function and indulge him in a trip to Panera for his favorite egg soufflé and a visit with his best preschool buddy. It is his first play date in more than 13 weeks. It is his first outing, clinic visits notwithstanding, in more than ten. By comparison, this day must have seemed like Christmas in the eyes of a four year old! And so I can easily understand and appreciate his inclusion of Santa on a hot summer night as he petitions thru scorched lips for blessings to be bestowed upon others.
Clearly, Callen easily understands and appreciates this, too.
And so much more.
And it's more than an afterthought.
God bless leukemia.
