New Year’s Day dawned cool and clear and calm - the weather, yes; but more importantly - particularly after the maelstrom that was New Year’s Eve - my mind. As I walked from my room toward the kitchen, I stopped to admire the Christmas tree. I mean, really admire it. Not just pass it by, peripherally aware of its continued existence in our living room. But really study it. Appreciate it. Take it in in its majestic entirety. I breathed in its deep woodsy fragrance. I turned on the tree lights, watched them glow and twinkle in the pre-dawn twilight. I studied the ornaments on the outstretched branches, reliving precious memories of when each was acquired or made.

It was a beautiful, living, breathing tree full of our family’s history as well as presence. And in that moment I realized that I had not given that tree its proper due. Thankfully, in keeping with our tradition of celebrating the full 12 days of Christmas, it would be up for five more days. And so, as I headed out the door, I resolved to come home and return to that place by the tree. Afraid of being consumed by the nostalgia of Christmases past, I had held the holiday spirit at arm’s length long enough. I was finally ready to embrace it.

Two hours later, Jim sent me a text message: the tree had toppled over shortly after my departure.

I. Was. Crushed.

So were countless of our ornaments.

Jim went on to assure me that somewhere, in some culture or universe, having your Christmas tree come crashing down on New Year’s Day was considered a sign of good luck in the coming year.

And while I have been unable to validate this, we’re going with it!

In his “root cause analysis” of the crash, Jim ultimately determined that the tree had too often gone unwatered, causing the trunk to contract with dehydration and, in its desiccated state, come unsecured from the bolts of the tree stand. Lacking any other form of support, it had succumbed to the force of gravity.

Simply put – we forgot to water the tree and it died.

Or else each of us thought the other was doing it. Either way, the outcome was still the same – a dead tree on our living room floor. Trust me - at a time when we have driven with expired tags, out of date inspection stickers, nails in tires and actually run out of gas; when semi-annual check ups are quickly on their way to becoming biennial; when we’ve lost our will to back-up and defrag with any consistency; when we have finally discovered why we have AAA and overdraft and Norton-antivirus protection - keeping an exaggerated houseplant alive was low on the honey-do list of “regularly scheduled maintenance” chores!

So it’s no wonder that, given our recent lackluster track record with other matters of upkeep, we would approach the beginning of Callen’s Maintenance phase with some trepidation. After all, we’re no longer talking green thumbs, Geek Squads and Goodwrenches here– this is our baby boy!

Well, we are now 72 days into Callen’s Maintenance, his longest and last anticipated phase of treatment. And we are learning that what it lacks in “routine”, it makes up for in “scheduled”.

By way of background …

In the early weeks and months following Callen’s diagnosis, the mantra “just wait until Maintenance” was held out to us by healthcare providers and even the occasional Mom-cologist. It became a carrot-on-the-stick destination of sorts, and was generally promoted as “if you can just get through THIS, life is so much better / easier / more normal in Maintenance.” To say we longed to get there would be an understatement. And since Callen would be spending 942 days there, we hoped and wanted and needed it to be as lovely as advertised.

In its idyllic form, Maintenance represents a true “new normal” for the cancer patient and his family. Having successfully achieved a clinical remission, but knowing full well that cancer cells linger undetected in the body, this phase works to prevent growth of those remaining cells, which could ultimately result in relapse. Depending on the age, gender, cancer genetics, and risk stratification of a child, this phase lasts months to years. Generally, clinic visits decrease from once weekly to once monthly. Rather than being dosed based on a child’s body surface area (calculated from height and weight), chemotherapy – which is administered orally, intrathecally (into the spine) and intravenously (through a chest catheter) – is dosed based on age, blood counts and signs of toxicity. The idea is to give back just enough immune function to allow re-entry into the world, without giving back so much that the cancer cells are again given free reign. That all-important neutrophil count, our nemesis for so much of the fight thus far, is the key to dosing: let it rise just enough that routine encounters with the rest of humanity can occur, but not so far that cancer cells, now given an inch, proceed to take…well, you know.

We were told that, during this phase, we would - are you ready for this -“forget our child has cancer.” We have been enthusiastically and repeatedly encouraged / reminded / admonished by one provider in particular, whom I refer to as the “normal zealot”, that Maintenance means it’s time to get back to 1) work for mom and dad, 2) school for the child, and 3) life as-per-usual for the family. Move on. Stop overthinking. Do not make plans around the child’s cancer any longer. Get on with it.

Now, I will concede a few points here. 1) Reaching this phase is, indeed, a big deal. 2) It is, without a doubt, a sign of progress. 3) It is unquestionably a loosening of the clinic reigns. 4) Seeing Callen's hair begin to grow back is really cool.

But let me be crystal clear here: it is not normal. And it is not possible to forget.

Because normal doesn’t still start most days throwing up. Normal doesn’t take multiple white and green and reddish-brown pills – up to 10 on any given day – at the hands of his parents. Normal doesn’t have a melt down on the night that those damn bitter green pills are due. Normal isn’t still ineligible for preschool due to immunosuppression and illness (his and others’). Normal doesn’t bleed from every orifice. Normal doesn’t experience mucositis and liver toxicity. Normal isn't having needles shoved into your chest and spine. Normal isn’t wondering when or if the work and worry of survival will ever end. So let’s put the myth of normal to bed, once and for all.

And as for forgetting your child has cancer?

Wow. Really?

Each of the three times we were poised on the verge of Maintenance therapy, we got the same lecture: event free survival is directly correlated to the degree of compliance with daily home medications. Study after study has borne out the following - miss more than one of the daily big white pills per month and survival begins to decrease. Oh, and by the way, that particular pill works best if it’s given in the evening. Two hours after dinner. On a completely empty stomach. With only a sip of water. And don’t forget to pick one night of the week and give two of those big white ones, or two nights and give one and a half. But not the same night of the once-weekly 3 green ones (6 if the pharmacy no longer stocks your usual dose), which similarly must be given on an empty stomach - excepting those weeks during which spinal chemo has been given. Oh and no citrus fruits or other sources of Vitamin C around the time of those green pills.

Wait, what???

Piece of cake, right? And speaking of cake… try timing family meals around these requirements under the best of circumstances, let alone when it’s time for the “monthly gift” – five days of twice-daily high dose steroids rendering it nearly impossible to get him to think about anything other than eating every moment of every waking hour – which is most of them since the steroids disrupt his ability to sleep.

Each of his current six flavors of chemotherapy has its own rhyme and reason of sorts - all of which is subject to change month-to-month based on a myriad of factors. And now each of them has an individual alarm in Jim’s iPhone because it is confusing! And being “capable” of keeping up is much different from being “compliant” (with its pejorative undertone and implication, thank you very much. Because I assure you, rare is the parent who needs incentive to keep his ailing child alive. But we do need help. And reminders. And support.)

So, I’m sorry to say, Maintenance myth #2 has been debunked: it is not routine, relaxed or mindless. It is timed, calculated and requires a consistent, conscious effort. And while there is much in the daily mix of things that we are at risk of forgetting, the fact that our son has cancer simply isn’t one of them.

I grieved the loss of this idealized Maintenance. I wanted to arrive in a blaze of glory and breathe a huge sign of relief. I felt that he, and to some degree we, were deserving of that for the ten hellish months that we had already been through. And when we didn’t live up to the ideal that had been put before us – when our answers to an overzealous “are you back to work and school and routine YET???” weren’t a resounding “yes, yes, yes”; when we were on our sixth unexpected clinic visit in 13 days; when he was forced to take another two week chemo holiday for neutropenia; when this latest news of liver dysfunction arose – I thought we had failed. Or been sold a bill of goods. Or been victim of a bait and switch. But mostly that we had failed. I felt pressure to say it was all well and good and fine, when in fact it wasn’t! We didn’t feel like we were maintaining anything YET, let alone our sanity or a sense of equilibrium. The letdown and feeling of loss was as significant as any other experienced to date, if not greater because expectations had been set so high for so long.

But now, finally, s-l-o-w-l-y, we’re beginning to get it. Callen’s Maintenance will be what Callen’s Maintenance will be. We are not trying to keep up with the Joneses Maintenance. There is no standard to which we must conform. There is no need (or possibility, even) to have or display a “perfect Maintenance”. Maintenance is not a goal or destination. It is a process. A really, really, really long process. It’s another phase we must go through, an awkward excruciating adolescence of sorts between sickness and health. It is an enormous undertaking that requires 870 more days of perseverance, upkeep, failsafe alarm clocks, external reinforcements, adequate hydration – and, yes - maybe even a little bit of luck.