Every time we near the end of a treatment phase, Jim and I are handed the next page in the leukemia playbook. There it is, in impossibly small and deceptively tidy black and white print: the names of the drugs, their routes of administration, the dosage, the days that each is to be given, and the timing of requisite assessment studies. At the top of the page, in slightly larger bolder print, is the name of the phase as ordained by the Children’s Oncology Group, with the parenthetical (and for Callen, generally hypothetical) number of days to be spent in each. Induction (35). Consolidation (56). Interim Maintenance (63). Jim, upon completion of each of these three phases, has renamed them the “It Sucks”, “It Really Sucks”, and “It Totally F---ing Sucks” phases. And while perhaps less scientific or “appropriate”, I have to agree that his monikers have been far more representative of the actual experience.
But this last one? Oh, they nailed it.
On August 26th Callen began the Delayed Intensification phase. At first blush it seemed a recapitulation of the Consolidation / “Really Sucks” phase in which Callen had spent 66 of his most physically punishing days and nights. And so we dreaded it. But with further scrutiny (and a magnifying glass) some differences between the two phases became apparent. And so we dreaded it even more. Instead of the usual one page, this phase filled two. Instead of six different chemos, there were eight. Instead of seven days of the dreaded steroids, there were 14. And curiously lacking atop the page was the anticipated number of days he would spend in that phase. An oversight? Or an omen.
I. Delayed
Treatment delays were nothing new; after all, had his been an orderly and timely progression through the phases, Callen would have attained the holy grail of leukemia treatment – Maintenance – in August. But here it was, the 20th of November, and there we were, stuck in perpetuity on the bottom of page two, having been unable to satisfy the stipulated neutrophil count. It was our third trip to clinic in as many weeks trying to “make counts”, as it’s called, so that he could make progress.
Callen had smugly told us that morning that he would not make counts. Historically, and most frustratingly, whenever he has told us that his “blood is not strong enough” for treatment, he has been correct. So he was annoyed to be held without food or drink in anticipation of a treatment he knew he wasn’t going to have, and we were anxious because despite our experience with treatment delays, we were no more comfortable with them. Our Callen is a worrisome combination of slow to respond and slow to recover, forever straddling the line between it being too risky to treat and too risky not to treat. And so everyone’s nerves were fraying and stomachs were churning, albeit for different reasons.
Two hours after our arrival, his numbers began to trickle in. Everything was trending in the proper upward direction. Our hopes soared: today would be the day! And so, even before that all-telling neutrophil count was in, the entire team readied itself for what now seemed inevitable. We were moved to the procedure room, the anesthesia team was updated, consents were signed, and a lengthy hopeful discussion about the next phase was had with the doctor. I stopped short of throwing an “I told you so” in Callen’s direction, as he had always been quick to do when the tables were turned. And it was a good thing, too, because thirty minutes later the celebration and preparation proved premature. When the final neutrophil count was resulted, everyone but Callen was stunned. He hadn’t made count.
II. Intensification
It wasn’t so much (or enough) that Callen’s cell counts were still low. There had indeed been progress – from 100 to 300 and now to 609 neutrophils. But 750 was the benchmark for treatment. Horseshoes and hand grenades notwithstanding, close didn’t count. And speaking of grenades … Callen’s physician, saying she “needed to borrow Mommy and Daddy for a minute”, was suddenly escorting Jim and me into another room. An impossibly small room with one purpose, no windows, three chairs, and two boxes of tissues. A room we had last been in a lifetime ago. A room that we, like so many before us and too many since us, had emerged from indelibly altered.
The door closed behind us and she began: the pathologist had called to report some atypical cells in Callen’s blood sample. Slides of Callen’s blood were being hand delivered to the clinic for her review. As soon as she had more information to share we would reconvene.
A prickly, uncomfortable, yet not unfamiliar heat shot through my body: pure unadulterated fear. The roar in my ears all but drowned out the pounding in my chest. Tears formed and fell. We listened and nodded and numbly made our way out of the room and back to Callen, who sat alone on his hospital gurney, innocently playing, completely unaware of the recent shift in the earth.
Another hour passed. We feigned nonchalance. We forced weak smiles. We hid our panic. Finally she beckoned. As we crossed the hall back into that room, another Mom – a veteran of that same walk and talk - caught my eye. We exchanged a knowing, wide-eyed terror-filled God-help-me-this-can’t-be-happening glance.
The door closed behind us and the doctor gently spoke. “Most of the cells on the slide look normal.” Pause. I voiced the unspoken: “Most is not all.” Affirmed. “Could this represent a relapse?” Affirmed. She offered me a look at the slides. Declined. We tearfully talked potential next steps – more and different chemotherapies, bone marrow transplantation, donors and matches and statistics. I inanely asked whether we should continue putting money in his college education fund. It was the only way I knew how to ask that question in that moment.
Another hour later, Callen was put to sleep for his fifth bone marrow biopsy: going straight to the source was the only way to know. Callen was confused – he knew he hadn’t made count. He was supposed to be going home. He had even promised that his blood would be strong enough the next time we came. We explained the “what”, but not the “why”, readied him for the boo-boo and Band-Aid he’d wake up to, held onto him until his eyelashes fluttered with sleep, and then completely and totally fell to pieces.
We left the room, unable to watch. We didn’t want to see the marrow being extracted. Would it flow from his body with ease? Or be sticky and recalcitrant with cancer cells? We waited to return until the entire team had disbanded, wanting no hint of what they had seen, what they might know, what they might have shared amongst themselves. Only his nurse remained in the room. And as she sweetly and lovingly recovered our son from his anesthesia, she broke down and cried with us.
Moments later the silence that had overtaken our room was shattered by the hospital fire alarm, the chaos in our minds now manifest in the whirlwind of activity around us. Out we went en masse – down flights of stairs, onto the street, into the cold. Callen, yet unable to walk fully under his own power, was cradled in Jim’s arms. The trucks came, the source of alarm was sought, no fire was found, and the all clear was given. We filed back into the clinic, incredulous at the ill-timed exercise. I looked at Jim. “This too is a drill,” I said. “This is only a drill.” And while half-hearted, we both managed a laugh. It forced us to breathe. It reminded us to hope.
It would be several more hours before we left clinic, and several days before the final results were charted. We spent that time not counting off days – for there was no space on the page to accommodate this place of purgatory – but making our days count, as only a renewed awareness of our universally numbered days can do. On November 24th we would ultimately learn that it was, indeed, a false alarm. And true to his word, on that very same day Callen would make counts. I had never been more welcoming of his “I told you so.” And never more ready to turn the page.
