This round was different than the previous seven. The COVID rule of one parent per patient had been lifted and for the first time the three of us, David, Benjamin and I, were heading in to the hospital together. Without having received special permission. On our way in, at screening and at check-in I kept feeling like we were doing something wrong, like we were breaking the rules..
Once in the Cancer Clinic Benjamin and David headed straight to the PlayStation console to get in as much LEGO/Marvel gaming time as possible before he was called to the Orange Pod for vitals and measurement checks.
While we were waiting the app I use to see all of Benjamin's test results alerted me that his bloodwork from the previous week was in. With David entertaining him I could focus on reviewing the results and prepare a list of questions for the doctor. I really need to concentrate when I'm looking at medical test results as I don't have a science background, let alone a medical one so in addition to this whole situation being highly stressful and anxiety-inducing it also comes with a steep learning curve.
Benjamin was disappointed when he heard his name over the loud speaker. It meant it was time to stop playing. In previous weeks it hadn't really mattered because once the nurse finished up with him he could go back to his tablet but this time he had to stop playing with David and risk losing their spot at the Playstation console.
Once we were in the Orange Pod he chatted away with the nurse and happily ran out when she told him the exam room number to find so that we could wait to see the doctor. We learned the oncologist was away on vacation that week so we'd just be meeting with the fellow.
After reviewing side effects we'd observed over the past week and Benjamin's physical exam I started through my list of questions. By now I know the top three results to look at: WBC (White Blood Cell count), RBC (Red Blood Cell count) and HGB (Hemoglobin). For the first time his results for WBC and RBC, as well as his protein level, were below the normal range.
I learned that when the WBC count is low that the second lab result to look at is Neutrophil. If this metric was also low and if it were to dip below a particular value and Benjamin developed a fever the situation would be considered an emergency. While I hope we never have to use it, we do have an action plan to follow. Remembering all of the pieces that play together, down to the most minute detail, that together constitute an emergency is overwhelming to say the least but it is a comfort knowing that there is a plan to follow.
The RBC was closer to being within the range of average but I learned that when this is low that the next metric to look at is the HCT which is the percentage of RBC compared to the total blood volume. Because the RBC was so close to average and decreased RBC is a known side effect of his medication, the fellow wasn't concerned.
Benjamin's protein level was also slightly below the average range. Again, I was given a value range to watch out for that would be cause for concern. The fellow also explained to me that if the protein level is low that I can look at the Albumin level to see if this is within the normal range. If it were not, I was told that physical symptoms would likely present including swelling of the legs, ankles, feet and abdomen.
Of course the doctors are monitoring these levels closely with every (weekly) blood draw and will communicate if there's any reason to be concerned, additional symptoms to watch for and what to do if we observe them but for someone like me, I need to understand more. When I get a notification on my phone that his test results are available and they aren't all falling in the 'normal' range, I feel like I have better handle on contextualizing the data to be able to ask better questions.
After our meeting with the fellow it was back to the waiting room where Benjamin was thrilled that no one else had set up shop at the PlayStation console. The mixing of the chemo took a bit longer than usual that day, allowing him to get really engrossed in the game. Good from a distraction perspective but when his name was called over the intercom to go to the IV room, he wasn't happy.
He started to whine and cry. He wasn't his usual polite, initially shy self when the nurse greeted him. He was getting more and more upset by the minute. I was grateful to have David with me to help get him set up and to try to calm him down. He didn't even crack a smile when the nurse pointed out the shamrock sticker they'd put on his chemo bag for St. Patrick's Day.
Once his butterfly was in he quieted down and was more like himself but as soon as it was time to take off the bandage and take out the needle he got really upset, even angry. It was so unlike him which I always find really hard. He was sobbing, pushing me away and swatted my face a few times. Under normal circumstances he's the sweetest, most sensitive and gentle little boy. I know all kids have tantrums but in this particular circumstance, following the eighth round of chemotherapy, in the cancer wing of Sick Kids, I found it especially hard.
His mood and behaviour continued on to the point that David had to pick him up and carry him from one set of elevators to another and down to the parking garage. He buckled him in to his seat somehow and we set off for home. Two minutes into the drive, without warning, Benjamin shifted back to his usual happy, silly self, telling jokes, pointing out things he could see from the car.
My dad was staying with us for a few days helping us with some handyman work. When we got home Grandpa asked Benjamin how it had been at the hospital. Benjamin replied, "Good! But I had a MAJOR freak out." And that was it. Back to happy.
Mood swings are a well-known side effect of his medication and thankfully they seem to be hardest on David and I which I'll shoulder any day of the week if it means one less thing our sweet Benjamin has to contend with. But it is HARD.
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