For me, the day started hours before my alarm went off, as they all do whenever we have an appointment at the hospital. My anxiety was easily an eight out of ten as today Benjamin would be having his CT scan. The scan that will tell whether everything he's endured thus far has had an impact. Whether it's been effective in reducing his cancer. Whether we'd be able to move into the next phase. Whether Benjamin will get to go back to school. And so on, and so on, and so on. My brain was working overtime in the darkness of our bedroom running through all of the possible scenarios while I actively, consciously made an effort to try to quiet the negative and the scary thoughts that though unwelcome, inevitably creep in.
Once everyone was up, getting ready and out the door was relatively smooth and by that I mean that nothing unexpected happened. We went through all of our family's morning rituals: Benjamin running into our room to say good morning before excitedly bounding into Ella's room to greet her, where she was sipping on her milk sitting on David's lap. Benjamin ate his breakfast and took his medicine without complaint all while chatting a mile a minute about everything: Transformers, snakes (ugh), school, his friends, games he's discovered, how much he loves the Ghostbusters theme song... Ella devoured her favourite breakfast: her Great Aunt Jane's muffins, apples and water and used her hand like a windshield wiper to clear her tray the minute she'd had enough. Benjamin took his sweet time getting dressed, getting into this and that along the way. Ella fought any help getting dressed as she's fiercely independent and wants to do it herself.
Mimi arrived to take Ella to school just as Benjamin and I were heading out the door. We said our hellos and goodbyes and we were off, without David this time as he couldn't come in and we weren't sure how long the appointment would be. We didn't want him dropping us off and us calling him to come back the moment he got home. Traffic getting to the hospital was in full swing for the first time since we'd started our regular back and forth to Sick Kids. When we arrived at our regular parking lot it was already pretty full. We've never had to park higher than level one but that day we dizzied ourselves going around and around until level six. Good thing we always leave with a good amount of buffer time as we arrived to check in for Benjamin's CT scan right on time and we were told we could go right in to see the nurse to get his butterfly needle put in to his port.
Benjamin was disappointed that we didn't have a wait because it meant he couldn't play on his tablet right away. I love getting these glimpses into how differently he perceives situations from the way that I do. Here I was thinking how great it was that we were being seen right away and meanwhile he had been looking forward to waiting.
We met yet another amazing nurse. She was everything we've come to love and expect at Sick Kids: kind, gentle, able to talk to Benjamin about any Disney movie and able to explain everything to me in layman's terms. She was very accommodating to Benjamin's preference in having his butterfly needle inserted while lying down as opposed to sitting in a chair. She disappeared and returned shortly after with a bed as there wasn't one in the room.
I've seen Benjamin get enough butterflies to know that his anxiety starts to spike when he sees the nurse setting up to clean his port site. As soon as I noticed her doing so, I put my head right next to his and started drawing his attention to the Cars game he was playing on his tablet. It wasn't long before he started to notice what was going on around him in the room and he repeated over and over, "I'm not ready for my butterfly, I'm not ready yet!". He started to scrunch his face and squint his eyes as small tears started to form. He tensed up for twenty to thirty seconds and then it was in. He returned to his game as though nothing had happened.
The reason Benjamin needed a butterfly was to allow a contrast dye to be injected into his body through his port. This would allow the radiologist to clearly see the impact the chemo treatments had had on his cancer to-date in comparing these scans with the ones from December.
We were lead into a small waiting room across from the room with the CT scanner where we played games until we were called in by a familiar face. It was the radiology technologist we'd met back in December who'd performed Benjamin's first CT scan that lead us to his LCH diagnosis. He made an impression on Benjamin back then and that day was no different as he was dressed in a happy, bright, tropical print dress shirt you'd likely only see on vacation and an attitude to match.
As we walked into the room, Benjamin was buzzing with excitement from his head to his fingertips and down to his toes. The place was entirely designed to look like a pirate's paradise, down to the CT scanner that had a painted pirate ship wheel painted around it. He couldn't wait to hop up on the bed and see it from a different angle!
I've been made to think that it's unusual for a four year-old to willingly get a CT scan without a sedative but for the second time, Benjamin was a total pro. The radiology technologist used towels to mobilize his head and I held up his tablet so that he could watch Cars 3. For however long we were in there he kept totally still, allowing the team to capture all of the images required by the radiologist to be able to assess and give his report.
After his scan, we returned to the first room we'd been in so that Benjamin could have his butterfly removed. This too is always a source of anxiety for him. The butterfly is held in place by a large bandage and in his mind, there are few things worse than a bandaid being removed. His port site is still healing so removing a sticky bandage, even with the special bandage remover the nurses use, is a source of pain. Just like getting his butterfly put in, I think it's the anticipation and the waiting for the pain to come with the removal process that is the hard part for him. When it's over he's immediate his happy self again, chattering away, smiling, laughing, cracking jokes.
Before we were released, the nurse told me to give him lots of liquids for the next twenty-four hours to flush the contrast dye out of his system. As we headed down to Starbucks I told Benjamin he could choose a juice (a very rare treat for him) as well as something to eat. An apple juice and a croissant later we were on our way to the parking lot. Benjamin happily walked beside me, holding my hand and told me how much fun the pirate room had been as he recounted every detail of each of the decals. I can't say enough how proud I am and how lucky I feel to be the one he calls "Mama". He's been through the ringer but he doesn't let it get him down for long. He truly is one of those amazing people who seem to always be able to find the light and that's just one of the things about him that lets him shine so bright.
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