Rounds one, two and three of chemo were all very different experiences.
The first was long and we received lots of information. We met with his oncologist, we learned what the next six weeks would look like, we learned about the trial and had to decide on the spot whether to enrol Benjamin as a participant and we received all of his prescriptions and the long list of possible side effects. It was also the only treatment in the first six weeks where we'd have an exemption for both David and I to be there together.
The second was heart-wrenching, draining and discouraging. From longer then expected wait times, to a fresh surgical site, to the Emla patch losing its numbing effect just in time for his first treatment, to Benjamin's meltdown reactions to all of the above (and who could blame him?), all of it was HARD.
The third was smooth and dare-I-say...easy? Everything seemed to run on time, Benjamin's stats and test results were all in the normal range, he was happy and (mostly) carefree.
Round four was a huge question mark for me in terms of what to expect. In the first three weeks I felt like we'd experienced the full gamut of possible scenarios. By nature I'm a planner and knowing what to expect, especially in high stakes situations, helps to keep me calm. In a strange way having gone through three vastly different treatment days, I felt like I had some strategies up my sleeve to help us get through whatever may come in round four.
That said, there was one major unknown that was causing major stress. Having family and friends in Ottawa I had heard first-hand experiences of how the protest had impacted them. With the protest moving to Toronto, I was on edge. I had major anxiety leading up to Benjamin's round four appointment. Would we be able to get to the hospital? Would we have to make our way through the protest at all? Would Benjamin be exposed to anything that could cause harm, physical or emotional? Not knowing and trying to plan for every scenario so that I could be as prepared as possible to responsibly and protectively handle come what may resulted in major anxiety. I didn't sleep much that week.
The morning of Benjamin's appointment, David drove us. We made it to the hospital safely and thankfully without incident. Benjamin did notice the number of police cars and city buses, one of each parked on nearly every block. He was also excited to see the lineup of snow plows on the side of the road.
Treatment that day was very similar to round three - smooth and easy. Aside from Benjamin's blood pressure being slightly elevated, which is a known side of his steroid medication, his stats looked good. We were told he could receive his chemo as planned.
We headed back to the waiting area and there we met with the wonderful POGO nurse (Pediatric Group of Ontario) assigned to Benjamin's case. The day before I'd had my first call with her to learn about how she will support us throughout Benjamin's journey:
With Benjamin's diagnosis we qualify for such things as a discounted parking pass and a childcare allowance for Ella. She helps us to navigate the system and provides step-by-step guidance.
Benjamin is eligible to submit a wish to Make-A-Wish. This was unexpected and hit David and I like a ton of bricks. This just made everything about his diagnosis and the road ahead feel so much more real that it did already. Even though it's meant to be a wonderful, happy opportunity, and it is, hearing that he qualified felt like a punch to the gut.
We learned that Benjamin, as well as our family, is able to participate in a number of events and camps put on by Campfire Circle (formerly Camp Oochigeas).
Educating the faculty at Benjamin's school about his condition, what specifically qualifies as an emergency situation and how to respond. This in particular will be hugely helpful and provides some peace of mind in ensuring no key piece of information is left out whenever he's green-lit to return.
Like round three, we were called into the IV room relatively shortly after returning to the waiting room. I told the nurse that Benjamin seemed to fare best when receiving treatment while lying down. I set him up with his noise cancelling headphones so that he could tune out the goings-on of the IV room. Again, Benjamin had a little bit of anxiety around getting his butterfly and tensed up in anticipation but also just like last week, he exclaimed, "It didn't even hurt!" when he learned that it was already in.
Ten minutes later, after he was given his sticker of the day, we were on our way. Robot ice cream was again the treat of choice, again before 11AM, but how could I say no? Ice cream in-hand, we met David outside the doors for big hugs before starting the drive home.
That night, once Benjamin had been tucked in, we hurried to get ourselves ready for bed, anticipating a wake-up call in just a few short hours that would last the entire night and through until the next evening's bedtime. That's what had happened after each chemo treatment to-date as insomnia is a common side effect of his medication.
At 11pm a little voice woke us up to use the bathroom. He then asked for a snuggle in his bed. I padded down the hall behind him to his room and crawled in. A little while later I said I was going to go back to bed and he let me go without a fuss. Odd. The next time we heard that little voice it was 5am. We couldn't believe it! A near full night's sleep after chemo. We'll mark that in the 'win' column and cross our fingers for a similar experience next week.
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