January 4th, 2018         (Scott)

Maintenance is supposed to be the easy part. It’s described that way in comparison to the other phases of treatment. Things are supposed to be as close to normal as can be during these 18 months. But these are the things we are told by the people who haven’t lived the process day by day with a child who may or may not feel crummy and who may or may not have the vocabulary nor the confidence to tell us how things really are.

I wrote that about a year ago when Maya was just a few months into maintenance. It really is funny how some things change and some things don’t. Many of the issues we face one year later are different and most are much less severe. Maya’s constipation has been more manageable– though we’ve had sporadic issues and even gone to the nuclear option (Lactulose); her liver function has been consistently good since the inclusion of allopurinol. But many of the other concerns we have today are unchanged. We worry often about Maya’s hemoglobin level, her ANC being too low or too high, we worry about fevers and infections, and we worry that her biological experience of maintenance may be of lower quality because we’ve never been able to find the right balance of drugs to keep her neutrophil count in the right range. In the past few months she’s been everywhere from 200 to 4500.

On Tuesday the number was just over 2000. So, we continue to work toward the right balance of meds– a little more methotrexate each week, another quarter tab of 6mp (yes, quarter tab… ever try to cut an aspirin into quarters?). And maybe we’ll find that sweet spot that we sense is so close. Either way, April 21, 2018 is it– the meds stop… and whatever comes after that will start.

I realize that last bit sounds ominous, and there’s a part of me that is truly worried about it. I’m working on a way to think about the five years post-treatment that will take us to the real finish line– the one that reads, “CURED.” The best I have so far is that each day that passes, post-treatment, brings a slight reduction in the probability of relapse… each day will be just slightly less ominous than the one that came before.

But through all of this, before, during, after treatment there is Life. There is spirit in our little dragon, already strong and growing stronger as we go. There is family, there is learning, there is laughter, and there is Love. Sara and I struggle with strange and interesting schedules and dosages and symptoms, but more and more we simply struggle to raise two little humans as any parents would– the best we can at any given moment. With Maya just recently turned five and Lincoln almost three (though he claims he’s also going to be five in February), we are mainly occupied with the standard stuff– feed, wash, sleep, love, repeat… and then also, in the space between all that, try to plan a bit for the future.

This is our world of being a family. It was here when we started all this almost two years ago, it is here now, and it will continue beyond April 21st. This, I think, will be my bridge from treatment to non-treatment– my bridge from one day to the next if that’s what it takes. But it’s something I know I can count on in my heart, my partner, my family, my friends, and in my community. Soon enough we’ll celebrate a great milestone, but the truth is that milestone itself doesn’t matter a bit… it’s the people, watching that marker shrink into the distance, together carrying momentum and strength and good health and the dragon’s spirit ahead, which is the thing to celebrate.

Maya got her second-to-last lumbar puncture with chemo on Tuesday. She handled most everything well as usual– the access (i.e. needle to the chest) is still no big deal, but try to take those monitoring stickers off her ribs and you get to see all the dragon’s fire. Her labs looked fine that day– Hgb had come up bit since ten days earlier, ANC was still high but we’re all fighting viruses this time of year. We made some slight adjustments in meds and added in an antibiotic to treat an ongoing ear infection as well.

Because of the nasty stuff going around this time of year and the increased reports of flu in our area, we’ve decided to keep the kids out of school as much as possible for a few weeks. This is much harder on our schedules– not to mention the grandparents who we lean on so heavily (we do feed them pretty well every now and then– thank you, Bapas). We hope this will allow the kids to get over what they’re currently fighting and keep them from piling on anything new. Thankfully, Maya and Lincoln continue to be great playmates and best friends– they have their sibling spats, but more often they laugh and create and explore together.

Before I finish, I need to add that my wife, Sara, continues to get more and more awesome all the time. You may not know this, but she won ‘Wife of the Year’ for 2017, and she’s already the favorite for 2018! She threw one heck of a 40th birthday party for me, which included both go-cart racing and scotch (no, not at the same time). And she balances all the planning, amidst all the chaos, with grace and strength. She’s my muse and my best friend. 

Thank you all for your continued support. We wish you all the best year yet in 2018!