Today was a big day! It’s treatment day 7 which means an entire week of the induction period is done! (The first most intense 35 days of treatment is called induction). Mercer is almost ready to be discharged to RMH (Ronald McDonald House) and we are so excited to be settling into our new home away from home on Sunday!
One week down feels like a big milestone! We’ve found out that once we’re outpatient, Mercer’s clinic days will be Friday. So we get to lay low, rest, hang out, play, do music therapy, ride bikes, and play Lego during the week then head over to the 8th floor oncology clinic for Friday appointments with chemo IVs and other procedures. What first felt like a massive jumble of new jargon and confusing numbers is now settling into a clearer picture of our new life here.
Today little man got another lumbar puncture to administer preventative chemo meds to his spinal fluid and at the same time under the anaesthetic, he also got an MRI. Mercer had three unexplained seizures last year and there are extra layers of precaution in treatment because of that. He also had his port re-accessed meaning he doesn’t need the needle replaced for another week or so. Anything that gives less pokes is amazing! He’s adjusting so well to having his port in his chest and today is the first night he’s sleeping without being hooked up to any IVs!!
Everyone here is incredible— I feel like a broken record for saying it, but being surrounded by people who work in a children’s hospital is amazing. Positivity and gentleness and patience and so many extras… today Mercer had to fast for a number of hours before his procedure and we had someone called a Child Life Specialist come bring Paw Patrol toys and Lego sets and play alongside him and he did a big messy art craft too. It absolutely worked to keep him engaged and not anxious waiting! And that’s their job. To come in and make families comfortable and to help ease kids into play and to distract and educate and comfort and encourage. Also the nurses know all the tricks to help make taking twice-daily meds less icky. The doctors talk to him directly and make jokes and take the extra time to explain things so well and be sure we have absolutely everything we could need.
Mercer got a blood transfusion yesterday, part of the regular maintenance for kids whose blood is getting blasted by chemo drugs, and it bolstered his energy. He played on the ground today with toys instead of just laying in bed with a lap table. Big moment of excitement for me to see him jumping around and setting up toys like normal.
It’s been a lot of hours in this one room, staring at the big city cranes lit with Christmas lights and drawing little doodles on his white board to make him smile. It’s been a lot of lobby Starbucks and cafeteria sandwiches and sleeping on the fold out couch just inches away from the ticking IV pole and listening to every sigh and shuffle as he sleeps in his hospital bed. I know our days of staying over here won’t be completely over— there will be other moments where we’re back in here for lots of reasons. But to know we’re about to graduate to outpatient and get closer to phase 2 makes us both feel so encouraged. Mercer keeps asking how many sleeps until Ronald McDonald and it’s almost down to zero! 🤍
Learn more about the Child Life Specialists here!
Check out our new digs at RMH by clicking here!
Mighty Mercer 
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