July 26, 2022
This entry is difficult to write and not for any of the reasons you might think given our situation. We've been so busy living in the moment this summer that I'm now three rounds of chemo behind on the blog. That said, I have notes from our appointment and photos to help jog my memory.
When we arrived on the eighth floor of SickKids, to Benjamin's delight, the PlayStation was free! While I checked him in and got his hospital bracelet he and David hurried over and posted up, quickly settling into the LEGO Marvel game. Before long a slightly older boy came along and began watching the two of them play. David offered up his seat and his controller and the two boys became fast friends, bonding over working together to "defeat" whatever villain was terrorizing The Avengers team that morning.
The boys took turns being called into the IV room, Benjamin to have the butterfly inserted into his port and his bloodwork completed before seeing the oncologist. It wasn't long before Benjamin was called into the orange pod to see the nurse to be weighed, his height measured and to have his blood pressure and temperature taken. As usual, we then went right into an exam room to be seen by the oncologist.
We alternate between seeing one of three LCH oncologists. This round we were seeing a different one from the one who'd ordered Benjamin's next round of scans. We decided to ask her about them in terms of their necessity. Not because we wanted to contest that they were required but rather because of what we'd been through following the delivery of his previous scan results (the LCH oncology team of three being in disagreement with the radiology team and us, the patient's family, being unfortunately privy to the conflicting opinions). To our surprise the doctor didn't seem to have any knowledge that the scans had been ordered. This was unsettling to us because at the round sixteen appointment just three weeks earlier it had been explained to us that the decision to repeat the scans was made collectively by all three LCH oncologists during rounds which is a round table discussion of active cases they're treating. We left the exam room feeling confused and decided to ask about the scans again at the round eighteen appointment in three weeks time as we'd likely be seeing one of the other two oncologists and wanted to get another take on the situation.
Back in the waiting room, Benjamin's new friend was nowhere to be found but the Campfire Circle volunteer was just arriving with a craft. Benjamin loves to participate and was excited to make a bejewelled pineapple out of construction paper and rhinestones complete with google eyes. When he was finished, the volunteer popped back over to chat and brought with her a plastic bubble gun that made huge bubbles. Benjamin was entertained until his name was called to receive his chemo treatment.
As we were walking out we were able to find one of the Child Life Specialists, hospital employees that are clinically trained to support the developmental needs of hospitalized children. We needed to find one of these employees because the following day Benjamin would be participating in a large-scale photo and video shoot for the final year of the SickKids VS campaign (more to come on that but I've been asked not to leak any information before the campaign launch!) and one of the requests was to bring his Bravery Beads, something we hadn't been collecting to-date. This blurb from the Women's Auxiliary Volunteers website explains the idea behind the Bravery Beads best: "The Bravery Bead Program invites patients at SickKids the opportunity to collect a different bead for each procedure or event while undergoing treatment. The colourful beads are not given as a reward but rather are earned, and they represent the unique and special treatment journey of each child. The beads are collected making a meaningful necklace showing their bravery."
We were given a blue piece of paper with a checklist printed on it and asked to indicate the number of times Benjamin had experienced each of the events listed so that we would be given the correct number of each kind of bead. I was completely overcome with emotion as I worked through the sheet, going back into my calendar of appointments making sure I was writing down the right numbers beside each event. The tears really flowed as I sat at our kitchen table later that night, stringing together the necklaces - plural. To be able to visually see just how much Benjamin has been through really put his journey into perspective for me. The bravery and positivity he's shown throughout has been nothing short of amazing and I'll be forever proud of this little fighter, who doesn't even seem to recognize he's fighting so much as loving living life.
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