The night before every chemo treatment is always an anxious one for me and this one was no different, but round five did come with a few new worries. David had an early morning meeting and wouldn't be able to drive us so that meant our trip would include finding parking and walking to the hospital with a less than ideal forecast. The anti-vaccination protests were still happening close to the hospital and while it didn't look like we'd be impacted we couldn't be sure.
My alarm went off at 6:02am as it does on every chemo treatment day but I had been lying awake for a while already, unable to shut off my brain. I showered, got Benjamin his breakfast, his morning doses of medicine and we both got dressed. I anxiously went back and forth about what footwear would be best. It seems trivial and like such a silly thing to consider but when you've had as many unpredictably long stays at the hospital you want to be comfortable which doesn't necessarily mean winter boots built for the Arctic. On the one hand, we weren't going to be dropped off at the front door, it was raining and the forecast indicated that it would turn to snow by early afternoon. On the other hand, snow boots for a potentially lengthly hospital visit wasn't ideal. In the end, I put us both in running shoes and we dashed across the street in the pouring rain to the car.
Waze gave no hint that anything would impact our drive to Sick Kids and thankfully that was accurate. We made it to the outdoor parking lot in twenty-seven minutes without incident. We hit some mild morning traffic but no traces of protestors, just the preventative measures we'd seen the week before that included a row of snowplows and police cars parked on many of the blocks leading up to Hospital Row. Relief washed over me as we pulled into the parking lot and I took a few deep breaths to calm the feelings of anger and frustration that I felt bubbling below the surface that I'd had this extra worry unnecessarily added to my already full plate. I let it go and re-focused my energy on being positive and upbeat for the little superhero in the back seat.
We raced along one, two, three sidewalks until we were under the shelter of the hospital overhang, Benjamin's bright cape flying behind him as he ran. Through the revolving doors, up to the COVID screening desk and straight down the hall to Shoppers Drug Mart.
We'd arrived a little early and I had a prescription to fill for Ella. She had been to see a new paediatrician the night before as she has some dry patches of skin on her cheeks and upper arms which can be a sign of LCH. Though it would be extremely rare for siblings to both have LCH there have been cases in Italy where it's happened. Given what our family has been going through, the word "rare" has lost all meaning to us. LCH in itself is rare but yet here we are. To us, Benjamin isn't a statistic. He's not "one in forty cases in Canada each year", he's our child.
We weren't taking any chances with Ella so when Benjamin's oncologist referred both kids to see this paediatrician who works out of Sick Kids as well as has his own practice, has an in-person working relationship with Benjamin's oncologist and has cared for children with LCH, it was a no-brainer.
To close the loop on Ella, after a thorough exam the paediatrician thinks her skin condition is eczema and will clear up in a few months with a topical steroid. We have a follow-up appointment in a few months time to hopefully confirm his suspicions but for now, it's a bit of peace of mind.
We headed up to the Cancer Clinic, checked in. Another week of smooth sailing: a quick wait, Benjamin's vitals and measurements were taken and we saw the fellow and the oncologist. Benjamin's blood pressure was slightly elevated which is a side effect of his steroids, but thankfully not enough to warrant additional medication to lower it. We reviewed the previous week's blood test results, all normal, and Benjamin was given his weekly physical examination. We were told we could proceed with that day's treatment as planned.
We headed back to the waiting room while they mixed the chemo for round five of six of the first, and hopefully only, induction phase. It wasn't long before Benjamin's name was called over the loudspeaker and we headed in to the IV room. As always, I explained to the nurse that he does better if he's lying down. I got him set up: put on his noise cancelling headphones and turned up the volume on his tablet, pulled down the zippers on his port t-shirt (thoughtfully hand-made and sent by friend who's a nurse in San Francisco) and took off his Emla patch.
Benjamin was more whiny than he'd been at his past two treatments but laid still and was able to be somewhat calmed by his tablet, my reassurances and a new superhero bunny stuffy he recently received as a gift who he calls "Sidekick Bunny". It wasn't the best session he's had (rounds three and four) but certainly was nowhere near the worst (round two still takes the cake). I also want to be clear that I don't say "whiny" in a negative way - who wouldn't feel that way after all he's been through? It's just the best word I can think of to describe the sounds he was making and the way he was speaking and asking questions. Whiny or not, he's still the bravest kid I know and I'm so, so proud of him.
The post-chemo treat du jour was a turkey bacon and egg white sandwich from Starbucks. I love that given the chance to choose any fast food in the world, he always chooses bacon and egg on an english muffin.
We got our treat and headed outside to walk to the car. The rain had tapered off and the snow hadn't started and thankfully there were no signs of protest that we saw on our way home.
That night after we tucked him into bed, we wondered if Benjamin would suffer from insomnia as he had after treatments one, two and three or if we'd all get lucky and he'd sleep through the night as he had after treatment four. Luck was on our side and we all slept soundly (for most of) that night). Silver linings, it's all about the silver linings.
Comments