Twelve. Twelve rounds of chemotherapy pumped into our little boy's body. It's hard to wrap my head around it. While it is medicine and our best shot at getting him healthy again it's also poison. I work hard to re-frame it in my mind as medicine, a means to a healthy end, but the P-word occasionally creeps in to my thoughts.
The morning of this appointment had a bit more excitement attached to it because we'd told Benjamin that after the two-week PlayStation break he could once again play his favourite LEGO Marvel Superhero game. A lot of the chatter from the backseat of our car on the way to SickKids was focused on this.
The minute we arrived at the Cancer Clinic, Benjamin bolted over to the PlayStation console. David wasn't far behind him and I'm honestly not sure which of them was more excited to play. Coming up on six years of marriage and I've never known my husband to be a gamer but now after a long day of work he'll occasionally sneak Benjamin's tablet out of his room at night and play to unwind.
When Benjamin was called to the Orange Pod he was greeted by a nurse we hadn't met before. Benjamin had this funny look of surprise, it was as though twelve rounds in he thought he knew what he could expect.
All of his vitals and his measurements looked good. His temperature and blood pressure were both in the normal range which are the key stats I'm listening for. Weight was up 0.2kg but not unexpected as he was still on heavy steroids and we know that it's only after approximately two months of being weaned off significantly that we can expect him to come down a bit to his new normal.
After we finished in the Orange Pod we were told the exam room number to go into to wait for the doctor. Benjamin wondered out loud if it would be the same room as last week where we played hide-and-go-seek as he ran around the halls to find the number. It was the same room, but this time, to Benjamin's delight, the nurse showed him how he could pull the curtain around the exam table to make more hiding places.
The physical exam was pretty uneventful, a good thing when you're an oncology parent. We didn't have anything worrisome to report from the previous week and our questions were mostly focused on the following week's CT and PET scans. The fellow didn't have any concerns so we were sent on our way, back to the waiting area, while Benjamin's chemo was prepared.
As Benjamin and David played their game, I could see Benjamin stop and tense up with each beep of the intercom system that lets you know an announcement is about to follow. As soon as he'd hear a name that wasn't his, his body's tension would release and he would relax. This reaction is newer and as his parent, a very difficult one to watch. More than anything I want him to know that everything will be ok, for him not to carry this anxiety, this worry at just four years old.
Once his name was called his demeanour changed immediately. The joy drained from his voice as he whimpered on the walk down the hall that he wasn't ready yet. How badly I wish that I could do this for him. Take the butterfly, the chemo, the insomnia, take it all. Sadly, the best I can do is take his hand.
Similar to the past few weeks, as soon as we entered the IV room he began to unravel. Crying and screaming that he wasn't ready yet. David and I spoke to him calmly and reassuringly as we lifted his thrashing body up on to the bed, laid him down, put on his noise-cancelling headphones and turned on his tablet. David stood at the head of the bed asking questions about the game, distracting him from the nurse preparing to give him his butterfly. He kept asking, "Is it butterfly time? Is it time?". When it was time, after the port cleaning solution had dried, David and I held him still, softly telling him it would be ok, it would be over soon and counting down.
Once it was in, he calmed right down as David went back to peppering him with questions about his game. I turned my attention to the nurse and answered the usual questions: his date of birth, when his last bowel movement had been, his date of birth again. The nurse showed me the bag of chemo so that I could read his name, date-of-birth, MRN number, dosage and expiration date and time. I nodded that everything looked as it should.
Seven minutes later it was over and time for the bandage to come off and the butterfly to come out. We repeated the exact scenario that had taken place seven minutes prior: crying, screaming and thrashing. Moments after he was back to himself.
We learned that before we left they needed a urine sample, something Benjamin wanted me to help with but he also wanted to show Dad how he peed in the little cup. Honestly, we were all too happy to agree to this seemingly funny little request so off we went to the family washroom so he could show David how he wouldn't "pee at all, not even a little bit on Mum's hands!". He said it with such enthusiasm that it was hard not to laugh. I was hoping he was right.
We dropped off the urine sample to the IV room, Benjamin chose two stickers from the clear plastic container, a Paw Patrol one for Ella and a Marvel one for himself, and we were out of there. Round twelve, done and dusted. While that comes with a sense of relief it also comes with a rush of anxious thoughts about what's to come. When we're going through an Induction phase, especially the second one, we have an idea of what to expect. While it's not easy there's perhaps a small sense of ease in what feels familiar. What comes next is not known, not to us, not to anyone else. That scares the shit out of me while simultaneously forcing my mind down the path of positivity, allowing myself to imagine what it might feel like to graduate to Maintenance, what that might mean for Benjamin, and dare I say it, what it would feel like to ring the bell.
These next couple of weeks are huge for us as they determine the next path on this journey. People often ask, "What can I do?". Right now, we'll gratefully accept all of the prayers, positive vibes, messages of love, optimism and hope that are sent our way. We appreciate them more than we could every say and even if we don't respond, please know that we see them and we thank you for keeping our little boy in your hearts. Truly.
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