Unlike round one, this second round of chemo would be administered by way of Benjamin's two-day-old port. As instructed by the nurse we spoke to following his surgery we placed the Emla patch, which is a square patch that sticks to the skin and has a numbing cream in the center, over his port before leaving the house. Because the Emla patch takes an hour to work and is good for up to four hours and since we were told that the total length of Benjamin's appointment would likely be between two and three hours, we figured the timing would work out well.
We completed our COVID screening as always at the hospital entrance and headed up to the oncology floor to check in. The wait for his initial exam was nearly an hour and half and while Benjamin was patient and never complained, he was getting restless. We were called into the pod where the chemo appointments begin with a series of measurements conducted by the same nurse every time, the one assigned to his case. Height, weight, oxygen level and blood pressure are the stats provided to the oncologist and the fellow before we move into an exam room to meet with them.
During this appointment we learned that Benjamin's blood pressure was high, a known side effect of the steroid medication he's been prescribed. We were told what symptoms to watch out for that could indicate something more serious, including any complaints of headaches, dizziness and changes to or loss of vision. In other words, scary stuff.
After a physical examination that included listening to his heart, an abdominal exam and applying pressure down his lower legs and ankles, we were told that he could receive his dose of chemo that day. Until that moment it hadn't even occurred to me that at any visit, if any of his stats were abnormal or if anything was off in his physical exam, that treatment could be delayed. It of course makes perfect sense, it just hadn't been a thought that had come to mind before and as such took me by surprise.
We were told we could head back to the waiting area and listen for Benjamin's name to be called over the loud speaker. The clock ticked ahead. One hour and then two. I headed up to the desk to ask if there was any chance I had missed Benjamin's name being called. The receptionist looked at her computer screen and assured me I hadn't. Half an hour later I was standing in front of her again. I was growing concerned that the numbing effects of Benjamin's Emla patch would wear off before he would be called in to receive treatment. I told her we only had twenty minutes left on the four hours and that his port had only be implanted two days earlier so I expected it would be tender. She quickly got on the phone with the IV room (where they administer the chemo) and minutes later we were called back.
There are three or four treatment areas in the IV room, each separated by curtains. We were directed to the one in the far corner. As soon as Benjamin was asked by the nurse to sit in the chair, he completely melted down. A second nurse arrived, and then the Child Life worker with a basket of toys used to occupy and distract kids before and during their treatment.
Recently, Benjamin has been going through a phase that includes episodes of extreme shyness, something that is totally new for him. It doesn't seem to matter if it's someone he knows very well or someone he's meeting for the first time and we're not sure if it's a result of his recent circumstances, his medications or just part of phase he's going through as a four year-old child. In any case, it seems to overwhelm him and if he's pushed, he can get worked up.
He started to cry, whimpering at first and then much harder, asking the nurses and the Child Life worker to leave him alone, repeating over and over that he didn't want to get his butterfly (the needle that's inserted into his port and used for his blood test and to administer the chemo). All of this behaviour is wildly unlike him and made it that much harder for me to see. But most of all, my heart broke for him. He was unraveling, and who could blame him?
One of the nurses suggested that I sit on the chair and have him sit in my lap. We managed to get through the process of cleaning the injection site even with the tears and the wiggles of anxious anticipation. Unfortunately at one point, Benjamin went to burry his head in my shoulder and his mask touched the injection site which meant the nurses would have to repeat the cleaning. He lost it all over again. I just sat there quietly comforting him, holding him close and stroking his hair.
At this point, the Child Life worker and one of the nurses disappeared while the other nurse hung back. She said that we would try moving to the the opposite side of the room as it has a bed and maybe it would be a smoother experience if he were lying down. Benjamin raised his voice to her asking her to leave him alone and then turning to my, sobbing that he wanted to go home. It took everything I had to keep the floodgates from opening and instead stay focused on being calm and soothing in moving him from one side of the room to the other.
Twelve minutes to go until his Emla patch would officially lose its numbing effect. We still had to get him across the room to the bed, in the bed, re-clean the injection site, do the blood draw and administer the chemo. I was pretty sure we were looking at fifteen to twenty minutes depending on whether at this point I could have any sort of calming effect on this poor, sweet boy of mine.
I finally got Benjamin into the bed and the nurses worked away quickly as I did my best to calm him. He was bawling uncontrollably at this point, repeatedly asking if the butterfly was in yet. As it was inserted he shrieked in pain. I was fairly sure the injection site was no longer numb, and combined with it being still very early on in the healing process, I think it hurt him as badly as it sounded. I would have given anything in that moment to trade places with him and take it all away. If II'm being honest, not just in that moment. I'd trade my health for his without a second thought any day.
For the duration of the blood draw and chemo session, as if on repeat, he asked to have the butterfly taken out, insisting over and over that it hurt a LOT. I wondered if we'd done the right thing consenting to port surgery, something that was meant to make Benjamin's chemo sessions painless and less traumatic, but there we were experiencing the exact opposite.
Thankfully the butterfly only had to be in for five or ten minutes. Benjamin's relief when he found out it would be coming out was short-lived as the next step was to remove the sticky bandage that's placed overtop to keep the butterfly in place during treatment. While the nurses gently use a special wipe to make the bandage removal as painless as possible, the bruising around his port post-surgery was dark and sore-looking. "My poor baby" I thought over and over and over as I held his head against mine and wiped his tears.
After what felt like an eternity the nurses told us we were free to go. Finally. Mere moments later Benjamin was back to his cheerful self, smiling and skipping down the hall to the elevators, loudly calling out all of the landmarks along the way, "The train painting!", "The heart paintings!", "The low oxygen lights!".
When the elevator doors opened on the ground level of the atrium, Benjamin excitedly talked about what treat he might choose from Starbucks. I couldn't tell you what his choice ended up being as I was still trying my best to keep it together until we could make it home. The drive from the hospital was one of those ones where you don't remember how you got from A to B. My mind and body simply clicked into auto-pilot mode and somehow here we were, home safe.
David, Mimi and Ella greeted us at the door. David asked Benjamin, "How was it, bud?" and to my surprise, Benjamin replied, "Good!" before running in to wash his hands and play with Ella. I was relieved he was so resilient and that something as simple as a treat from Starbucks was enough to seemingly erase that morning's trauma from his mind. Me, on the other hand, I excused myself to head upstairs to cry, ok to weep, in our bedroom before collecting myself and heading back downstairs to play mum for the rest of the day.
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