“Mommy, will I have cancer this summer?”

Callen was trotting along behind me in the yard a few weeks back when he threw this query my way. Even for our boy of a thousand questions per second, the tenor of this one was a first.

I stopped and faced him. Our eyes locked. “Yes, Callen, you will,” I said evenly. “Why do you ask?”

“Because, Mommy, it has been a long long time.”

I paused, agreed, then listened intently while he told me what he wanted to do this summer. What he hoped he could do. What he wondered if he could do. And then - without waiting for confirmation or (more probably) denial – he shifted gears.

“Oh - and how do babies get out of your tummy?”

Just like that, my ability to tell the truth, the whole truth and nothing but the truth (so help us all!) vanished.

It has, indeed, been a long long time. And while creative licensing may be prudent when discussing the birds and the bees, Callen expects and deserves honest answers to his other questions: Will it hurt? Is this going to take long? How many pills do I take tonight? Does this medicine taste bad? Will it make my hair go bald again? Do I have to take a “nap” in clinic today? How much longer until I can eat? Is that the medicine that smells bad? Is today a short clinic visit? How short - short short or medium short? Is my blood strong enough to do this /have that / go there? When will my blood be strong enough to do this / have that / go there?

There are simply no easy answers anymore. Even those we know with certainty – which seem fewer and further between these days – are difficult to articulate. After all, how many different times and ways can we dress up disappointment?

In the month of July alone there have been one dozen clinic visits. (By way of perspective: were Callen on track with the prescribed Maintenance schedule, twelve would be the sum total of visits required in an entire calendar year!!) All but one of these visits has centered on ridding his body of the Parvo virus, which as of today has disrupted 4 months – 123 days – of his cancer-fighting efforts, to say nothing of his life.

He has spent as many as 4 days per week in a room measuring 11 x 7 of my feet (or 6 x 3 of my paces). By the end of any given treatment day, he has shared that stark insufficient space with his two parents and as many as four nurses, one doctor, two medical students, one respiratory technician, one enormous breathing tent with equipment for aerosolizing his antibiotics, one IV pole and pump, one blood pressure machine, two equipment stands, one semi-padded yellowed chair, one hard plastic blue chair, one rolling stool, one TV-style tray table (sans TV, of course, because that would be a luxury) and two bags stuffed to the gills with card games, Lego kits, snacks and drinks.

By the end of any given treatment day he has spent as many as 8 hours in this room. Save the aforementioned entourage and equipment, his time is passed alone on a hospital cot, a 2-millimeter thick hospital grade sheet barely keeping his exposed flesh from sticking to the plastic casing around the “mattress”, six feet of IV tubing tethering him to the adjacent pole. There are no windows in his room to offer distraction or a view of the passing day. There are no windows on the door, its white-ish veneer disrupted only by a fluorescent orange “Droplet Precautions” sticker affixed to the outside, warning passersby to be wary of the room’s occupant, and instructing those who must enter to wear masks.

The monotony of his day is broken up by regular knocks on the main door as his nurses make their scheduled assessments which occur before each infusion begins, every 15 minutes during the tedious hours of active infusion, and one final time before discharge…so many sets of vitals, in fact, that by the end of each series of infusions the tender flesh of his arms will be bruised and scratched from the repeated application and squeezing of the blood pressure cuff.

There are regular knocks on the Jack-and-Jill style bathroom door, too, which remains locked from our side to prevent anyone from accidentally gaining entrance to our airspace. This private bathroom, the one “perk” of our monastic existence, is at the expense of all others who are relegated to the one remaining bathroom in the entire clinic -a clinic occupied by children and their predominantly female attendants, frequent utilizers of this now-scarce commodity.

Excluding those precious rare occasions that visitors make their way to our room for entertainment and socialization, the days drag on measured in beeps. Drips. Whirrs. Knocks. He fights sleep - sleep that should come easily given the adult-sized antihistamine doses he receives prior to each infusion to guard against another allergic reaction. He fights loneliness, keenly aware of the sounds of his peers passing their time together in the neighboring group treatment room. He fights tears – and when those broom-length eyelashes and protracted blinks aren’t enough to hold them back any longer, they spill hot and angry with words like “I can’t” and “I don’t want to.”

It would be one thing if, along with counting down the drops left to infuse we were also counting down the last viral particles to be eliminated. And for a time it seemed as if that were the case: his viral load dropped from 42,000 copies per milliliter of blood to 5,700 then 5,100. But after his most intense round of treatments to date – a week in which we spent more than 20 hours in that treatment room, a week in which he stayed accessed round-the-clock, a ¾ inch long 20 gauge needle and 6 inches of tubing sticking into and out of his chest at all times, a week in which it took an army of angels to manage the needs of our children and household, a week in which his immune function took a dangerous dive and his chemotherapy was completely suspended (again)– there was a dramatic increase in his viremia. As in his viral load quadrupled !

That simply cannot be explained. (I mean, it can …scientifically… rationally… logically… even shorts bursts of chemotherapy delivered at fractions of their optimal cancer-fighting strength have been too much for his exquisitely sensitive immune system to handle. Given chemo – even in suboptimal amounts – Callen’s ability to fight off infection of any sort [hello, Parvo] is compromised. Given chemo in suboptimal amounts, Callen’s ability to fight cancer is compromised. And so there has developed this sort of stalemate between the chemo and the Parvo. And as of today it appears that the chemo will have to completely surrender to the Parvo – at least for some [undefined and uncomfortable] time.)

But it can’t be explained to Callen, who has no interest in the minutia or science or logic of it all.

He just knows that it has been a long long time.