It has been more than nine weeks. Nine very long, very trying weeks: trying to get Callen recovered; trying to understand what the hell just happened; trying to get back to where we were -wherever that was!

Did we not recognize a good thing while we had it? Yes, he threw up every day. Yes, our lives were scheduled around bitter green pills and mania-inciting little white pills and nausea-inducing big white pills. Yes, we were nervous to have been given our very first 4-week hiatus from clinic (sidebar: there was no need to be nervous - about that, anyway – we didn’t even last two full weeks “on the outside”).

How could we have known that those would quickly become “the good ‘ole days” and that we’d be longing for their return?

We were barely settled in at home after the Easter weekend hospitalization when we received the call. Callen’s viral culture, drawn upon admission five days prior, had just returned positive for Parvovirus B19. They wanted us to be prepared for what would happen during the next day’s clinic visit: Callen would be placed in isolation. Contact and respiratory precautions would be in full effect. No shared physical space, no shared air space. No waiting in a waiting room. No use of the common treatment room. Gowns, gloves and masks would be required apparel for all. Terminal cleans would be ordered for any room he occupied.

This head’s up “so as not to alarm us upon arrival” was all we were given: the rest of the discussion would have to wait for the visit itself.

Parvo. Fifth’s Disease. Slapped-Cheek Syndrome. Erythema infectiousum. Call it what you will, it has become Callen’s nemesis. This common childhood illness is usually little more than a several day nuisance. What’s a little Parvo between friends? Generally, nothing. But when you and your friends are immunocompromised cancer patients, it can be a literal matter of life or death.

Still, with the rendering of this diagnosis, events of the prior week suddenly made sense: his profound neutropenia. His life-threatening, transfusion-requiring anemia. His headaches and body aches and high fevers. The Parvo virus had targeted his bone marrow and destroyed his ability to make white and red blood cells. An enemy considerably more common and less formidable than cancer had rendered Callen defenseless. Ironically, and second only to a few recent glorious days at preschool, getting Parvo was the most “normal” childhood experience (and exposure) he’d had in a year.

But our relief at having an explanation for this latest turn of events proved short-lived. Because while it clarified the immediate past, it confused the future. Little is known or written on the subject of Parvo in leukemics. I read every case study in existence. It didn’t take long. There is no standard of care. And while experts disagree about optimal treatment, they raise universal concern about prolonged treatment disruptions and subsequent relapse. Armed with that same set of case studies, Callen’s doctors devised a plan. It was set to begin in 3 days, as the requisite treatment wasn’t available the day we were there.

Unfortunately Callen couldn’t wait that long.

Fewer than 24 hours after that clinic visit his temperature soared to 103.7F. Back to the hospital we went. Antibiotics were ordered round-the-clock. More blood cultures were drawn. Intravenous immunoglobulin (IVIG) was ordered. He was being transfused again – only this time with other people’s antibodies (which, under different circumstances, is really kind of cool!). Because of the potential for reaction, two nurses attended to him throughout his hours-long infusions.

It quickly went from bad to worse. By the second day of admission, abnormal cells began to appear in his peripheral blood smear. On the third day they were identified as atypical blasts. As in the kind of cells that had once occupied more than 80% of his marrow upon diagnosis.

Déjà vu all over again.

During rounds we were beckoned away from his bedside and into the hallway for a discussion of that finding. Standing in the stark hallway surrounded by doctors and nurses and pharmacists and medical students and a passing patient or two, I almost missed that claustrophobic clinic room where these types of conversations were generally held.

Almost.

More studies were ordered. More IVIG was given. We held our breath and took turns pacing and crying while the hours crawled by. A lifetime later, good news was delivered: further studies had proven those abnormal cells to be noncancerous. We took turns crying again - this time for joy.

More days went by and finally Callen had held his counts above critical and his fevers at bay long enough to go home. For the first 12 hours after discharge we didn’t even tell our family we had been released. We feared we’d bounce right back into the hospital. We dared not tempt fate. And it wasn’t as if we could see anyone, anyway - we were on total lock down. Again. Only this time the threat ran both ways: he was vulnerable to everything, and now he posed a risk to others.

He felt sick. He looked sick. When, just a few days later, it was time for his monthly steroid burst, we waited for the side effects. There was nothing. No energy. No appetite. No need to repeatedly remind him to use his “indoor voice”. We wondered if he might not have been back in the hospital for resuscitation were it not for those little white pills…

He was so compromised that it was unsafe to proceed with the big white pills, too. Those all- important big white pills. The ones we’d thrice been lectured about: miss one per month and survival is impacted. One missed turned to two. Then three. Ten. Fourteen. Ad nauseum. And speaking of - there was no nausea so long as there were no big white pills…

He couldn’t take those nasty green pills, either. That became a bitter pill for us to swallow. Add to that the discovery that the pharmacy supplying that particular chemo was shut down for dispensing wrong and expired medications, and suddenly Jim and I were the ones who felt nauseated…

We finally suspended the medication reminders. Every time one rang we went from worrying about missing a pill to worrying about the pill he was missing.

Weeks went by. His counts recovered – slowly at first, then exponentially. His marrow was proliferating. Hallelujah! But wait. Not so fast (literally)! Because once his white count and ANC reached normal, the worry shifted from being vulnerable to every day germs to being vulnerable to relapse.

Normal is not good. Normal is not goal. Normal is not normal. Not for Callen. Not now. The chemo helps hold his marrow proliferation in check. You’ll recall what happened the last time it was allowed to run rampant…

And it wasn’t just his numbers that were recovering. He looked better. He got stronger. His indoor voice again became a thing of the past. We saw (and heard) it. You did, too. You told us as much. And maybe it struck you as odd that we took a deep breath, or gave a noncommittal “ok” when you asked how he was doing. Or why we failed to fully echo your enthusiasm when you noted how healthy he looked, how high his energy was, how thick his hair had become, or how wonderful it was to see us out and about with him.

Because week after week, test after test, he has remained Parvo positive. And since the virus can ebb and flow and wallop him at will, potentially sending his numbers into a dangerous downward spiral, he had to have his chemo suspended for two weeks. Then given back at quarter strength for one month. Then half dose for two weeks. And now three-quarter strength. And how Callen feels is inversely proportional to how much chemo he’s on. So he’s been feeling pretty good.

But at what cost?

I will be honest. The first time he got a dizzy tummy on the 75% dosing I couldn’t help but breathe a teeny tiny sigh of relief. Seriously, how messed up is that?!?! But this is where we live. Between a rock and a hard place. In a place devoid of purity. In a place where everything has a tradeoff, an associated risk/benefit ratio and a far-reaching implication. We’ve been conditioned not only to take the bad with the good, but often as an indicator of it.

We’re not masochists or Debbie Downers. We don’t like this damoclean approach to living. We certainly don’t begrudge Callen a good day - far from it!! And while a chemo holiday here and there is something we’ve (kind of sort of almost maybe on a good day when we’re too tired to consider all of the ramifications) come to expect and be “fine-ish” with, today marks 65 days since he has been on his full complement of chemotherapy. And counting.

One missed pill per month…

It is impossible to “unhear” that.

Last week, after consultation with infectious disease and transplant surgery and formulation of a new plan, Callen received his third round of IVIG. The curious thing about this IVIG is that there’s no way to know exactly which viral antibodies are contained in each dose. Each batch is pooled from thousands of donors who have presumably been exposed to and developed antibodies against life’s more commonly encountered viruses. So maybe he’s getting a boost against Parvo each time and maybe he’s not. We have no way of knowing. But we do know that he tolerated the first two rounds without incident. This third time, though, despite appropriate premedication, he had an allergic reaction. And since then he’s been flushed, achy and easily fatigued. He’s slept more, eaten less, and generally felt a little lousy. In our distorted world, this has to mean something good is taking place.

Any moment now the phone is going to ring to tell us the result of last week’s Parvo test. When it’s finally good news, we’ll be sure that it goes viral…