Between round ten and round eleven we had a few noteworthy things happen. The first was an ophthalmology appointment at Sick Kids earlier in the week. Benjamin has had a small white growth in the shape of a tiny bubble forming next to his eye on the scar from his biopsy surgery.
After an exam it was assumed to be an epiphyseal inclusion cyst which is essentially skin growing inside itself that presents similarly to a whitehead. The doctor told us that he wasn't worried but to continue to monitor it and to take photos of it every few days. We were also instructed to apply a warm compress for ten minutes per day and were told that it may resolve itself. To be cautious, we will have a follow up in a month or two.
That appointment took place on one of Benjamin's three school days per week and so afterwards we headed straight there. As we were pulling up I received a call to say that someone in this class had been in close contact with an individual who had just tested positive for COVID earlier that morning. Benjamin and I were still in the car so after I hung up with the school I tried reaching out to his nurse at the hospital as well as his POGO nurse. Both returned my call quickly and separately but gave the same guidance: it was really up to us to decide how risk-adverse we were, but both said that if it were them, they'd keep him home. My gut was telling me the same and while we so badly wanted to establish a routine for Benjamin, being that he's immunocompromised his health comes first.
Two days later we were hospital-bound again, this time for round eleven. While getting ready to hit the road Benjamin asked both David and I if we'd wear our 'Benjamin the Brave' capes and of course we said yes. My heart warmed that I'd been invited to join the club as Benjamin had only asked David to wear his for round ten.
Once again we were stopped at every turn by people telling us they liked our capes and once again Benjamin was glowing and delivering an enthusiastic "Thank you!" to anyone that told us so. He even excitedly showed a few people that his cape was lined with Spiderman.
David and I had decided ahead of time that once again we'd stay away from the PlayStation to see if it made any difference in Benjamin's reaction to being called to the IV room and having his butterfly put in. Unlike the previous week he wasted no time in asking for his tablet.
It wasn't long before we were called to the orange pod. There we learned that once again his weight had gone down by 0.1 kg, making his total weight gain since beginning treatment 2.7kg. While his blood pressure wasn't classified the same as last week's "perfect", it was still within the normal range.
His white blood cell count, red blood cell count and hemoglobin levels were slightly lower than they had been in past weeks but looking at his secondary statistics, we learned that there was no cause for concern and that his levels weren't such that Benjamin would present with any of the known, worrisome side effects. Relief, sort of.
Back in the waiting area, I studied Benjamin, watching his reaction to the sound of the 'beep' over the intercom before the next patient was called. Each time it was the same: look up from his game, freeze, relax when he heard someone else's name. Poor little guy. How anxious he must feel. This behaviour is new and honestly it's difficult to watch. I reached over and stroked his hair as he settled back into his game.
When his name was called, it was the same reaction we've unfortunately come to expect. Our little guy whimpering that he's not ready yet. Us trying to comfort him with reason without success. Our pace slowed as we got closer to the IV room, Benjamin's anxiety and distress rising along with the volume of his protests.
Once again it was a two-person job to hold him still while comforting him as the nurse inserted his butterfly into his port. And once again he calmed right down as soon as the needle was in, not even noticing the blood being drawn out, the chemo dripping in or the solution flowing through to flush the line. But as soon as that line was disconnected the anxiety and distress sounds began to rise. His cries of "I'm not ready! Ow! Ow! Owwwww!" as the bandage came off and the needle was pulled out.
Occasionally in these moments the thought that there will be another year or two of this creeps in and it all feels overwhelming. I have to work to remind myself that I need to be strong so that Benjamin can fight his best fight and that he will beat this. This isn't the whole book, it's just a chapter in what will be a very long story.
Just like that, once the band-aid was put over the site of the needle our little guy is back to smiling, charming the nurses and eager to get into a long empty hallway so that he can race through it.
I got in line for Starbucks while the boys headed to the pharmacy to pick up a prescription refill. When the pharmacist said it would be a half-hour wait of course David offered for me to go with Benjamin but I know how special it is for them to spend some 1:1 time together on a weekday so whenever possible I try to give them those moments. I sent the boys down to the car where they could safely take off their masks and enjoy their treats while I waited.
Another round done and dusted with just one more to go before the next round of scans. Fingers, toes and everything crossed until then.
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