19. Hello Again

I am always rolling around a few ideas in my head at any given time. Trying to find the right analogy for the current flavour of our existence. And right now, it feels a little bit like being a grade 12 student, walking the halls feeling nostalgic and starry eyed and also extremely ready to be done. We’ve trudged the halls of RMH for just shy of ten solid months now. It sometimes feels like Good Riddance is gonna play over the intercom and maybe I need to walk across the grand living room and receive some sort of diploma. Certainly we deserve a balloon drop at least! I feel bursting with pride for how we’ve weathered this time, how we’ve made friends, figured out a whole new way of existing, and built a new kind of life. Our nurse clinician even told me I’ve helped some of the other moms newer to this whole thing with advice and tidbits and sharing parts of our journey. She thanked me. I was bursting with pride and almost teared up. That’s probably the best compliment I could receive… The best part of this whole ordeal is that our lived experiences might help another family. It’s incredible and humbling and motivating. When we first got here, neither Mercer or I were ready to make friends or interact. And now we have a long list of people we love.

So even though we’re only in the back to school part of the year, it’s feeling more like graduation season to me. I’m so deeply ready to move onto the next thing. I also know I won’t see most of these people ever again. Or if I do it’ll be a snippet of time, a half conversation catch up in a hospital hallway or an RMH kitchen. Life will never be exactly like this again. It’s daunting. It’s exciting. I feel like a pimply 18 year old unsure of herself but ready for the next adventure and also a little sick of the cliches. But also secretly tearing up to the montage of clips from our time here that rolls in my head.

We’ve been stuck in this waiting pattern all month. I watched everyone post their kids “first day of school”’ pictures on front steps and with smiling faces. I couldn’t help but feel the grief rising with each passing picture of a child with a full head of hair ready to go to school with kids their own age without worrying about neutrophils or being hospitalized for a regular cold. On the first day of school, my littlest buddy was sitting in a hospital room with me doing Lego while FaceTiming his brothers on the island doing the same.

But the grief passes quickly as my focus shifts to Mercer’s blood counts and their stubborn refusal to rise. His last treatment block has been over since September 4th. And he’s still not ready. He’s had four checks and he’s just not there yet. His hemoglobin and platelets took a big hit in delayed intensification (DI). He had thirteen platelets and red blood cell transfusions over 3 weeks to recover. Absolutely wild to comprehend… he couldn’t even go four days without needing a boost. Finally those numbers are standing strong and his scary-looking bruises are all but vanished. He’s got energy and pep and his silly goofiness has returned. His favourite phrase right now when he does something sneaky or says something cheeky is to follow it up with “that’s for your business!!!” And we all laugh.

But his neutrophils are low. Not to bore anyone, lol, but for those who care about numbers, they were 0.0 for most of August. Rose to 0.2 when he was inpatient over the Labour Day weekend, rose to 0.3 at the following check. Then 0.5… and yesterday? Back to 0.4. They need to be 0.75 to start the next cycle and begin the process of thinking about moving home. And for some perspective, a typical healthy child’s neutrophils are 1.5+.

I didn’t realize coming into this life, that waiting agonizingly over blood levels was going to account for so much of our time! Arm poke, disappointed news, try again in four days. Repeat. It’s like Groundhog Day. It’s impossible not to get your hopes up. And it’s hard to even comprehend moving home or packing when it’s an unknown amount of days away.

It’s a lot of breath holding and fingers crossed and desperate prayers. It’s a lot of hurry up and wait and don’t buy too many groceries because we might not be here long but then oh yes, never mind. It’s almost saying goodbye to people a few times over because you’re not sure if you’ll see them again before you leave and the idea of leaving without saying goodbye makes you (me) wanna throw up. I had absolutely no closure when I left my house in November for a two day trip for testing. My two kids had no closure when they finished spring break and moved to Vancouver suddenly. I really, really want us to be able to say goodbye here properly, on our own terms.

So I’ve tried to cheese it up — bought a cake and planned a play day with the boys’ best buddy so we knew we had a going away party. I hung up the party decorations from their birthday in our room so it feels fun. I keep the pictures Mercer takes on my phone in the house of kitchen cupboards and blurry friends. Because it’s normal now, but we’ll forget. And even though I started off feeling the opposite— I don’t want to forget it all.

Once I went to Disneyland with a group of girlfriends and they watched Parks and Rec (a very good show if you haven’t seen it) and the main character in that show is obsessed with scrapbooking. And one of the girls on our trip scrapbooked the trip while we were on it. It was hysterical. She was grabbing things from the hotel or Disney wrappers, bags, or other odds and ends and frantically throwing it together. In the air port, at Disney, in the hotel. We were always on the lookout for cute things to add and she was racing around taking Polaroids and fighting glue sticks in the 30° California heat. It is basically impossible to do in real time but that didn’t stop her!

That’s kinda how it feels trying to process the enormity of this process while living through it. I’m trying to make a mental scrapbook of this chunk of the journey as it’s ending. I’m trying to make all the memories, freeze the friendships in time, savour the heck out of everything. Trying to freeze frame the kids silhouettes sitting on the playhouse in the yard. Trying to romanticize taking the laundry down to the communal laundry room and running into friends and catching up much like how I imagine women did for the last few hundreds of years. In so many ways, I’m living as a villager in the “village” everyone so badly wants to be a part of.

I never expected the conflicting emotions of moving home. As more and more people I knew went home, I began to ask questions about what it’s like. And the resounding answer was “not great”. There is a low to be expected, a lull. And not a blood count one… an emotional one. I’m trying to savour and celebrate on one hand, and take a deep breath and steel myself on the other.

So as we spend September waiting, much as we spent February waiting, I’ll hold both truths in my hands, just as my children instinctively know how to do. And we’ll let it be what it’s going to be. And we’ll relinquish control. And we’ll pray. And we’ll grow. And adapt. And strengthen. And we’ll get ready to say goodbye to some, and hello again to others.