August 16, 2022
On the drive to SickKids, as Benjamin sat in his carseat, happily playing away with his Transformers and oblivious to us, David and I ran through our questions for the doctor. Between appointments I keep a running list of anything we need to discuss. Topping the day's list, after Benjamin's round seventeen appointment, David and I were eager to ask another of Benjamin's three oncologists for their take on the repeat CT and PET scans ordered for the beginning of October.
The day's appointment started out like so many others. As soon as we rounded the corner into the Cancer Clinic Benjamin's eyes darted over to the PlayStation where someone was already playing. Benjamin walked over and asked the little boy if he could play and was thrilled when his request was met with an excited invitation to join. For the briefest of moments it felt as though we were watching Benjamin make a new friend on the playground instead of on the eighth floor of SickKids in the Cancer Clinic.
When Benjamin was called to the IV room to have his butterfly inserted and his blood drawn I was surprised to be greeted by a male nurse. By no means do I mean that in any sort of sexist way, it was just the first time I'd ever seen a male nurse in the IV room and I'd never really thought about it until that moment. Right away the nurse was able to bond with Benjamin, launching into a discussion about The Avengers, and it was the smoothest butterfly insertion I've witnessed so far and there have been many.
Once his butterfly was in and his blood had been sent to the lab it was back to the waiting room for a few minutes before we were called to orange pod and then ushered into an exam room. As we waited I pulled out Benjamin's tablet so that he could play followed by our list of questions.
After Benjamin's physical exam from the doctor we started in with the easier questions. With a week-long Muskoka vacation planned for the end of August we needed to make our in-case-of-emergency plan. If Benjamin ever develops a fever we have to get to a hospital immediately. And not just any hospital, it has to be one that is able to conduct the sort of testing required in Benjamin's case. Not surprisingly we were told to go straight to Soldier's Memorial Hospital in Orillia if we ran into any type of emergent situation, a hospital that is of particular comfort to us given that we have a close friend who works as a doctor there.
Next, we discussed any concerns with the fast-approaching pick-up date where we'd be able to bring home our eight week old golden retriever puppy. We had discussed our plans to get a puppy earlier on in Benjamin's treatment but wanted to make absolutely sure we were aware of any potential watch-outs. Thankfully we were reassured that any risks to Benjamin's health were extremely minimal.
We discussed a few other things pertaining to Benjamin's medications as well as prescription refills before we asked to be walked through the decision-making process and the reasoning for repeating the CT and PET scans earlier in the treatment plan than what was considered common. In conversations with close family and friends after this discussion I found it difficult to articulate why David and I walked away from this appointment feeling like we'd been punched in the stomach. The information we received from the oncologist, the third of the three LCH specialists we'd talked to, wasn't necessarily different than what we'd heard from the previous two but the lens he put on his answers to our questions felt less optimistic than those we'd been presented with in the past. Phrases like "there's still a soft tissue mass", "hasn't had a complete response", "can't call it complete remission" were all used in that appointment when phrases spoken by team members who are meant to present a united front to the patient and their family have spoken phrases like, "the disease is not metabolically active".
The question David and I are most often asked about Benjamin is, "How is he doing?". While it's not that it's a wrong or inappropriate question to ask nor do we fault anyone for asking it, but it is an impossibly difficult one for us to answer. We've heard three slightly different takes from his three oncologists on his last CT and PET scan results and one much different opinion from the radiologist. We're repeating these scans at an unusually early juncture in his treatment and we're not totally clear why other than there are a number of differing opinions as to what's going on with Benjamin's disease as the scan results, though scientific, are open to interpretation. The short and very simple surface-level answer I can give is that we're lucky to be able to say that if you didn't know he had cancer, you probably wouldn't know. But the truth is that no one, not even the experts, can say what's going on under the surface and as his parents that's been a gut-wrenching fact that hits hard from time to time, often when we're not expecting it to.
After we met with the oncologist it was back to the waiting room until Benjamin's chemo was ready to be administered. It wasn't too long of a wait and before we knew it, with very minimal upset from Benjamin, it was over and his butterfly had been removed. Once again, grateful for the amazing nurses in Cancer Clinic. They are truly a very special group of people.
David and I were unusually quiet on the ride home as we tried to digest the news and the tone of the appointment. In the backseat, Benjamin softly stroked the ear of his bunny stuffy, his eyelids growing heavy as drifted off to sleep as he often does after chemo. We felt helpless. There's nothing we can do until we know the results of his next scans, which we're hoping with everything we have will be unanimously agreed upon good news in the eyes of each member of Benjamin's medical team.