New normal.

“The current state of being after some dramatic change has transpired. What replaces the expected, usual, typical state after an event occurs. The new normal encourages one to deal with current situations rather than lamenting what could have been.” www.urbandictionary.com

This cliché is how our society has come to describe that which goes from the extraordinary to the everyday, from cataclysmic to commonplace, from shock to surrender. It epitomizes how we work to incorporate an apocalyptic event into our average lives to establish a new reality that can be both lived with and lived within.

This cliché is our life.

Callen is now halfway through the consolidation phase of treatment, which - barring any forced “chemo holiday” for noxious side effects or disqualifying blood parameters - lasts 56 days, utilizes an aggressive combination of six drugs and yields innumerable ill effects. All in an effort to bring about that as-of-yet-elusive remission.

While his counts are still labile, Callen experienced some modest recovery in white cell function when it mattered most– enough to mount a defense against Olivia’s viral illness, but not enough to lift isolation restrictions that are now entering a ninth long, lonely week. He has flirted with temperatures as high as 100.2F, just shy of the 100.4F threshold required for hospitalization. He has enjoyed fifteen blissful days without an invasive procedure - which also means there are no prognostic-yielding results to wait for or react to. Despite the lack of headline-grabbing events, though, this time has been anything but stagnant. Or ordinary. Rather, there has been a quiet evolution of sorts taking place.

We now have a chemotherapy pharmacy in the kitchen, a biohazard disposal unit in our bathroom, and a living room set up for oft-daily infusions. Jim and I take turns donning the requisite personal protective gear to administer Callen’s chemo while the other of us keeps one eye on a stopwatch and one eye on his eager-to-help hands. Callen’s understanding of the situation has matured from “I have linguemia” - as if it should be served with clam sauce and warm crusty bread - to “I have leukemia, which is still better than Pop having diabetes because at least I can eat chocolate”. Except that he is no longer all that interested in chocolate, or anything else. Callen’s once-insatiable appetite has been replaced by anorexia: he keeps a “dizzy tummy” most of the time now, and suffers the uncomfortable side effects of the anti-nausea medication used to calm it down. He has shed his steroid-induced weight-gain, his surgically implanted port-a-cath now visible beneath his thinned skin. His hair loss has accelerated and a full head-shave is impending. He has learned to pee in jugs, puke in containers and hold pressure on anything that oozes. His sleep, as his energy, comes in fitful bursts. He no longer asks if it’s a school day for him or a workday for me. Barring weekly clinic visits, there are few other time stamps to mark the passage of days. The only calendar we use is the one provided to us by the Children’s Oncology Group, which organizes our lives into numbered days of treatment, spelling out which drugs are given when. Weekends don’t bring a welcomed break from the daily grind – there are no play dates, Little League games or church outings to look forward to. Rather, on Saturdays and Sundays (otherwise known as days 2, 3, 9, 10, 16, 17 and so on, ad nauseum) Callen must take additional twice-daily antibiotics to protect him against infections generally reserved for people with full-blown AIDS.

I was embarrassingly naïve to think that this next phase would somehow be gentler on Callen. Or us. That the rigorous month of induction he endured being initiated into cancer’s ranks would be the hardest on his battered little body and psyche. Truth be told, the “shock and awe” campaign of those first twenty-eight days pales in comparison to these seemingly endless aftershocks.

And so these past two weeks have found me struggling to put pen to paper - unsure of how (or whether) to “properly” document this leg of our journey for public consumption and posterity. Because this is the day in and day out of having a child with cancer. And we must not only bear witness to, but be active participants in, our child’s punishing treatments. We cajole him into accepting (without necessarily understanding) that the pills we gag him on, the elixers we pour down his throat, the poisons we inject into him with our own hands, are "for his own good". There are simply no words...

This is our new norm. The disquieting calm after the storm.

When the barrage of bad news declares a (temporary) ceasefire, bringing about a deafening quiet -and an opportunity to absorb all that has transpired.

When we peer cautiously through the rubble to survey the wake of cancer’s destructive path, digging through the debris to find prized souvenirs of our life before this diagnosis.

When slowly, but surely, we identify, secure and defend those precious things (that aren’t really things) to ensure their survival of all that lies ahead.

When we grieve that which must be left behind, and accept what is irrevocably changed.

When we dust ourselves off and vow to fight like hell against being consumed or confined by malady.

When we wilfully come at Callen's cancer with everything we've got.

In keeping with his protocol, we must now consolidate: combine forces, intensify will, strengthen resolve, face forward, and emerge to a new reality.