I sat down to write this probably 3-5 times. I wrote out one big diatribe, off the cuff, as is my style, and I switched so rapidly between writing a practical update about treatment blocks and dates, and writing about the emotional journey we’ve been on and some of the mental hurdles now that we’re so long in this game. It flipped too aggressively between the two, so I’m attempting to make a two part update! The first chunk will be the practical stuff— where Mercer is at in treatment. How long we have left in Vancouver (spoiler — we still don’t know!) and those types of dates, figures and details. And the second chunk will be how I feel about all of that lol. Feel free to read or skip whichever you like!
PART ONE: Brass Tacks
This part is the hardest to write, strangely enough. I feel like a personality-vacuum when I write out the plain technicalities and medical jargon. It doesn’t feel like me and it doesn’t seem to suit Mercer. But it’s important. All the minutiae matters and helps give me a (false) sense of control. It feels knowable, winnable, doable. And it is important to string together the story of how we got here and where we’re going! Knowing exactly what lies ahead and exactly what we’ve conquered helps me and my boys to have perspective, pride, and also courage to keep going! We’re getting there guys!!
Mercers treatment plan is this:
✔️Induction
✔️Consolidation
✔️Blina 1
✔️Interim maintenance 1
👉Blina 2
▪️Delayed intensification
▪️Interim maintenance 2
▪️Maintenance
Mercer is on day 24 of 28 days of Blina 2. That means there are only two blocks of treatment remaining before he enters maintenance! Maintenance will be about 18 months of at-home care with only short and infrequent visits to Vancouver.
So like; the end is in sight ?! It feels bonkers to finally be saying that! But both delayed intensification (DI) and interim maintenance 2 (IM2) are lengthy. So it’s a bit of trepidation mixed with excitement haha. There is a small break after Mercer’s backpack comes on off July 1. We’re able to come home until July 7. And that might be our only visit home before we’re able to actually move home. So I’m branding this our “summer in the city”.
DI is a chemo-heavy block, with two sections and a break in between. It’s about ten weeks total but it’s common for delays because it’s blood count dependent. It’s basically one final full-blast attack. After multiple light treatment blocks in a row, I can feel my nerves tighten and I’m steeling myself for whatever lies ahead. I finally got the “calendar” of the treatment block and it’s filled with new meds, info sheets, new side effects and even new medication administration techniques. I’m still working my head around it.
After that comes IM2, which should be fairly similar to IM1, which was about 6 days of treatment spread over 60 calendar days. We were able to move home and do those appointments as day-trips. If we’re really lucky and the stars align and his blood counts are good— we might be able to move home at the beginning of IM2. That would be mid or late September. But there are a lot of if’s and when’s between here and there, so as always— all plans are made in pencil.
Originally we were told 6-9 months in Vancouver. We’re definitely hitting 9+. It feels frustrating to see the numbers and months and dates extend and extend and get larger and larger and home get further and further away. But there are 7 blocks before we hit maintenance and we’re definitely home. And we’re heading into block 6!
Mercer does so well with the Blina bag and other than a few mishaps with air in the lines and one particular tree branch incident, he gets to do whatever he wants and keeps a full-speed crazy almost-5-year-old pace! Mercer has had barely any side effects and seems to rally through things SO well, so I am praying that continues and that DI won’t be too harsh on his little body.
I never expected to be in Vancouver this long, or that all three boys would be with me full time here for such a length of time. It’s been a lot of sacrifice and love and dedication and heaps and heaps of help to get us here and there is a lot of maneuvering and flexibility and leaning on my parents and our family and friends and to get us through. I’ve truly experienced the “village” parents dream about! I’m beyond grateful.
PART TWO: The Feelings
The days are buzzing by and blurring together in a meld of scooters, sunshine, outdoor eating, chats with other scattered parents, remote control cars, grocery deliveries and constant snacking and iced coffee sipping. The weather was grey and rainy for a few days and it was a welcome change, since one of the boys caught a cough and we were trapped upstairs in our room enduring a few groundhog days of screen time and eating in bed. One tiny room to the four of us gets really old really quickly.
It’s been long enough into this journey that things have repeated — we’re familiar with the meal schedules at RMH. We know what it’s like for
Mercer to wear the backpack. We know which nurses are more fun. We know the quietest time to hit up the lab for bloodwork. But now I’m facing down this new treatment block. It has like 3 new medications. It has an option to have a sub dermal implant thing for daily shots for a portion of time. It has a repeat of the steroids that make kids hangry and a bit roid-ragey. It’s got a heart test at the beginning of it because these medications can cause damage to the heart muscle and he’ll require testing as he ages to check on it. Talk about sobering.
There is a break in the middle of DI, very close to the twins’ birthday but our nurse clinician was sure to tell me that sometimes children’s blood counts are too low for them to return home for the break. So in my mind, the few days at home we get between blina and DI (July 1-7) are the only days at home we’re likely to get until we MOVE home. I’m praying our move out date is in September, but I know all our plans are in pencil, so I won’t speculate too far into the fall. Our estimate of 6-9 months in Vancouver has already come untrue, so I am holding very loosely to everything.
I’m trying so hard to romanticize our time here, to brand this our summer in the city. While Mercer has had his backpack, his blood counts are good, so we did our big adventures — the aquarium and science world. Places we dreamed of seeing since we first realized we’d be here long enough it’s considered living here. Those are both checked off the list now and it feels good to do the big city things kids dream of. But now that they’re both accomplished, it also feels disappointing because it means the next thing is low white blood cells and extra hand washing and avoiding inside places.
But every poke, IV drip, and picnic lunch riding scooters outside at RMH gets us closer to home. Closer to our new life. Closer to our friends and family and the future. Kids are way more flexible and optimistic than adults. Mercer does so well wearing a backpack all day long: he’s used to stopping to let me tuck his cords back into the bag and zip it closed. He’s familiar with getting his port bandage covered so he can have a bath carefully. He’s able to do pretty much anything he likes — climbing the playhouse and jumping off, scootering around at full speed, the only thing I draw the line at is rolling down the grassy hill haha. Oh and playing under the trees with branches that reach the ground — last week Mercer got his cords stuck so tight on some branches that it dislodged the needle in his port and we had to go to the hospital and get it all reset. He had to be monitored for half a day and it changed all the dates for the rest of our appointments for the month so it was a bit of a nightmare for my organizational brain and meant a surprise long day in clinic.
Literally while writing the beginning of this update, Mercer’s pump starting dinging saying “air in lines” which meant a page to the oncologist on-call and then a shuffle of the nurse’s workload on the inpatient side (since it was the weekend when the outpatient clinic is close;) and they fit us in two hours earlier than our scheduled appointment to get a new bag and to have the air removed.
It feels like it’s literally always something right now. Mercer had a scooter crash (with helmet mind you!) and got a wicked road rash on his forehead. Vance got a cough and we were barricaded upstairs. And Conrad needed to have repeat bloodwork to check to see if has leukemia.
It’s a topic I’ve stayed fairly quiet on — but if one twin has leukemia, the other twin has an elevated chance of getting it as well. The likelihood is quite low, but if the twins are identical, then the number is slightly higher, maybe as high as one in five. We still don’t know for certain whether they’re identical or fraternal– but so far Conrad’s bloodwork is showing in the normal range. It was an enormous relief when I got the results because I’d been eyeing up all his bruises with an increasing amount of alarm and anxiety, but even though I breathed easier, something new was also revealed to me.
I’m always going to worry about cancer.
We are over 213 days since diagnosis. That’s SO long for me to process, adjust, grieve, rally, and endure. It’s been so many terror-filled moments, and way more hope-fueled times. It’s been tearful phone calls and optimistic daydreaming about the future I believe is lying ahead. It’s been fervent, (and sometimes cuss-filled) honest prayers. It’s been gratitude and attitude realignments and radical acceptance. Deep at my core I am certain and sure our future is good. There are so many beautiful things ahead for us— this a sad story, not a sad life.
But it’s only become abundantly clear to me in the last few days that I will never not worry. I will overanalyze bruising, petechiae, skin color, muscle aches, energy levels, fevers. The hyper vigilance might never completely disappear. The back of my mind may never be cleared of all fear. There will likely always be some level of fear/ nervousness/ anxiety/ worry about cancer. And I’m not usually a very worst-case-scenario thinker. I’m usually pretty chill and relaxed (I think?) so it’s hit me like a ton of bricks that even when our approximately 300 days in Vancouver are over, even when our approximately 800 days of actual treatment are over… I might be returning to my old house, but I won’t be returning to the old me, our old life.
Our entire family, blood and chosen, are going to be irrevocably changed by this. And while I feel like I knew that before, now I’m knowing it in a richer, deeper way. Layers and layers get revealed slowly over time and you can’t know how you’re going to feel until you’re there. The road goes in unknown directions and through places you never expected. That out of control feeling never goes away. I still feel a bit like a child being held by the hand, taken somewhere only the adults know, which they speak about in words I don’t understand.
It’s extremely frustrating to spend long portions of time living like that, but it has a strange positive. It clarifies you and frees you up to focus on other things. To live in the moment more. Every sip of coffee while the kids play together in a gang on the patio feels like a miracle. Every good bloodwork result feels immense. Every music therapy drum-smashing session feels like magic. Every morning waking up together in the same tiny room feels special. It also forces me to realize I need to grieve the life we won’t go back to. But while I’m grieving I can also celebrate and look forward to the life that waits ahead for us, shimmering on the horizon like the sun on the sea. Calling me forward and keeping us going.
While writing this, my mind remembered a bible verse, tucked away in my memory for precisely a moment like today. When I googled it I found it was Hebrews 11:1 —
Faith shows the reality of what we hope for; it is the evidence of things we cannot see.
Mighty Mercer 
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