Round six. The last round of this first (and hopefully last) phase of intensive, weekly chemo. As always, the night before was restless, sleepless. It's sort of like an extreme version of the way I feel the night before an early morning flight. Every little thought, every little sound, every little thing wakes me up from whatever version of light sleep state I manage to get.
I had already been wide awake for over an hour when my alarm went off at 6AM. Benjamin was up too as I could hear the excitement in the quick pitter patter of his footsteps getting closer to me. Before I could reach my phone to turn off the alarm he was beside me with a "Good morning, Mama!" in his sweet, cheery voice. When he says it I can hear the smile on his face without seeing it in the darkness of the early morning. It always makes me smile.
By now our chemo day morning routine was established. I showered while Benjamin snuggled in my place in bed with David. I urged Benjamin to get dressed. He didn't want to. We compromised and he kept his pyjama top on but changes his bottoms to underwear, socks and pants, and always in that order. "Funny little bunny", I said to him. He smiled. We headed downstairs.
My mum was staying with us for round six and she'd arrived from Ottawa late the night before, long after the kiddos had fallen asleep. Benjamin bounded downstairs to the basement to greet her. I could hear him excitedly talking her ear off as I began to set up his morning medications and make breakfast for him and Ella on the main floor.
After breakfast we got ourselves ready to leave the house, which included having Benjamin change out of his pyjama top and into one of his port shirts and a zip-up hoodie. Chemo days are synonymous with zipper access tops so that Benjamin doesn't have to remove any clothing to receive his medication at the hospital. This is important because Benjamin's anxiety in the IV room tends to go up in accordance with the number of events that take place before he receives treatment. It's also a known side effect that patients can feel chilled while receiving chemo.
David was able to drive us to the hospital this week which always makes the morning smoother and more relaxed. After big hugs at the hospital entrance Benjamin and I went inside and lined up for COVID screening. Benjamin has been going through a shy phase, something that's so opposite to the little guy we've always known, but to my surprise he started chatting with the woman asking us the screening questions. On our way up to the Cancer Clinic a few people stopped to tell him they loved his cape. Instead of shyly ducking behind me, he beamed and said a confident, "Thank you!". We stopped in the windowed corridor to put on his Emla patch as we've done every week since round three. He seemed so light, so energetic, so happy.
Very shortly after checking in we were called over the loud speaker to come to the Orange Pod. There are a number of pods, each one a different colour and ours is always the orange pod. This is where we meet with the nurse and Benjamin is weighed, measured and gets his blood pressure and temperature taken. Often Benjamin is very shy with the nurse, again, something totally new to see with him, but that was not at all the case that day.
Benjamin excitedly told the nurse all about our trip to the zoo earlier that week, telling her he loved seeing the "gross snakes". I mentioned in a previous post that I'm totally and completely phobic when it comes to snakes and he, unfortunately for me (or because of me, if you ask David) is fascinated by them. I made a promise to the universe when he was first diagnosed that if we could come through the other side of this with a clean bill of health that I would take him to see the snakes. With Benjamin's CT scan coming up early next week and David having taken Tuesday off work, I decided to preemptively make good on my promise in the hopes of receiving good news. While I very well may need to throw away the clothes I'd worn to the zoo as they were completely drenched in stress sweat from the moment we opened the first pavilion door, I've kept up my end so fingers, toes and everything crossed that the universe makes good on its end.
Benjamin continued on, talking about the "stinky rhinos", the "hungry polar bear", the "huge tigers", the "silly penguins" and the "venomous Komodo dragon". The nurse was clearly entertained by his descriptive storytelling and it warmed my heart to see this glimpse of the outgoing little guy I've always known to be truly Benjamin surface in the Cancer Clinic. While he's had these sorts of interactions with countless doctors, nurses and hospital staff early on in his journey, it's taken him time to warm up to those he sees regularly during his treatment sessions.
From the orange pod we moved into an exam room where we met with oncology fellow. We went through my list of questions, reviewed Benjamin's test results and the data the nurse had just collected. His weight gain had decreased and his blood pressure was well within the normal range this week. No indication of any infection from the previous week's urinalysis. His port incisions and the biopsy site were healing well. Good news all around. We would be able to proceed with his chemo treatment as planned.
Back in the waiting area, Benjamin decided he'd rather play on the Cancer Clinic's gaming console than his tablet. I couldn't stop smiling as I watched him hop off the chair he'd initially sat in to play. It was as though his excitement was literally bubbling over and he physically couldn't sit. He had to be up, to keep moving his feet, to keep jumping around and to keep his fingers excitedly moving. If you follow @benjaminthebrave on Instagram you may have caught the video I posted of his hands and feet in constant motion as he played.
It was a longer wait than we'd experienced the past few weeks but Benjamin didn't mind at all. When his name was finally called to the IV room his mood shifted immediately. He grew anxious. He dragged his feet as we slowly walked down the hall. As we entered the doorway he hid behind me. My heart sank. That familiar lump in my throat appeared. I pushed on willing my voice not to crack as I explained to the nurse that it seems to be easier for everyone if he can lie down instead of having him sit in a chair. As in past weeks, this was no problem.
The nurses in the IV room (and everywhere I've been in Sick Kids) are so, so good. The pivot easily and their tones are always happy and reassuring, something I can't imagine is easy seeing what they see and hearing what they hear day in and day out.
Once I laid Benjamin down on the bed and got him set up with Sidekick Bunny, his tablet and noise canceling headphones, he began to cry. And then sob. I stood at the top of the bed and pressed my head next to his, wiping his tears before they hit his paper hospital-issued mask. I told him over and over that everything would be ok, that he was the bravest kid I know, and that very soon we'd be on our way to get a treat and meet Daddy.
I don't think his tears were caused by any physical pain but rather that his anxiety runs high and boils over as we go through the process of getting ready to insert his butterfly into his port. Once it's in and his blood is being drawn, his port is being flushed and his chemo is being administered he calms right down and zones in on his game, insisting I play along. That was exactly what happened that day. Then once it's time to remove the bandage and his butterfly, he starts to get worked up again. As soon as it's out and it's time to choose a sticker, he's back to his happy self, talking about what treats I think there might be to choose from.
Because the wait had been longer I gave him the choose and egg white sandwich and a treat. His eyes lit up and he asked for a warmed chocolate chip cookie to celebrate the end of this first phase of treatment. We walked to the revolving door to meet David and begin the short trip home.
Later that day he asked to walk to pick up Ella from school. His mood was happy and he was over-the-moon to have Grandma staying with us. That night, he didn't experience insomnia.
While the 10-15 minutes in the IV room were tough, the rest of the day showed promise and gave me hope that sunnier days might just be what's ahead for our sweet boy. Until then, everything, everything crossed and positive thoughts that we'll hear good, or even great news.
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