September 15, 2022
It was just after noon on a perfect sunny September day and I had just come upstairs from switching over the laundry in the basement. I glanced at my phone. Two missed calls from Benjamin's school in the couple of minutes I'd stepped away. As I was about to hit redial I got the third call and a concerned voice on the other end of the line told me that Benjamin had exhibited a number of signs he had a fever and when they took his temperature it was a blazing 39.4 degrees Celsius. I told them I'd be right there.
I rushed around packing the hospital bag. Yes, sadly we have a designated go bag for occasions such as this. Pajamas. Port t-shirt. Regular t-shirt. Full-zip sweatshirt (port access is key). Sweat pants. Cozy socks that double as slippers with grips on the bottom. Super Sidekick bunny. Amazon Fire. Amazon Fire charger. Phone charger. Noise cancelling headphones. Water bottle. Snacks. Spider-Man Bandaids. Emla patches.
As I packed I called the Cancer Clinic to let them know that we would be coming in and asked them to contact both Emerg and the oncology team. Being a weekday and within business hours this was the emergency protocol I was to follow. Next, I called David. No answer. Redial. No answer. Redial. No answer. So I texted him: "911 - Ben has a really high fever. Picking him up and going to SickKids." Finally I reached out to his mum to see if she could pick up Ella at the end of the school day and once again Mimi saved the day, saying yes without hesitation (though she may think twice next time I ask because when Ella saw her at pick up she waved her index finger at Mimi and said, "No, no, no Mimi. I want Mama.").
My heart was racing as I struggled to observe the 40 km/hr speed limit. As I pulled up Benjamin's teachers rushed out to meet me with his things and gave me a quick run-down of the past ten minutes since we'd last spoken on the phone. Benjamin came to the door, walking slowly and slumped over holding one of his teachers' hands. I picked him up, thanked the school staff members, carried him to the car and buckled him in. We drove about fifteen seconds before I pulled over as I remembered I hadn't put his Emla patch over his port to numb the area as I was fairly certain it would be accessed at the hospital. On the side of the road after I'd applied the patch to his chest I opened my Clock app and started the stopwatch. This was because the Emla patch has to be applied one hour before it started working and has the desired effect for up to four hours. At any given time, often several times, the nurses will ask how long it's been on and I've found this the easiest way to provide an accurate read without having to think: open app, look at time lapsed. Done.
I glanced in the back seat at our sweet boy at every stop light on the way to the hospital and reaching behind me to stroke his leg at every chance. I just wanted to hold him. As we pulled in to the underground parking garage below the hospital I still hadn't heard from David. I lifted Benjamin out of his car seat as he was really sleepy and completely out of it and I carried him over to the elevators where the hospital always had a couple of wheelchairs waiting. I lowered him into the seat and made sure he was as comfortable as possible before heading up to screening. We got our hospital-issued masks and headed for the doors to Emerg. My version of PTSD began to kick in as we walked through the doors and waiting in line to be triaged by the nurse. Once again I was alone in that line with my little guy, the weight of the unknown crushing my mama heart and a sense of panic I was desperately trying to keep below the surface.
The wait wasn't long and to my surprise, once he had been weighed at the nurse's station we were immediately shown into an exam room. It was a large room and one with windows. Funny how having access to sunny daylight in a hospital room can make a difference in terms of mood. I found I was more optimistic and had more energy to make the hospital experience as enjoyable as possible for Benjamin, something that takes more emotional energy than I could ever describe.
I was told there was a level one trauma situation underway and that in all likelihood the wait for care and for test results would be longer than usual as a result. While that did nothing to settle my nerves about Benjamin's case I completely understand the logic. I told myself that if I were the parent of the child requiring level one trauma care I would want the all of professional experts available focused on his care to give the best chance of survival.
When the nurse arrived to access his port Benjamin had been wearing his Emla patch for well over two hours, meaning the access point was most definitely numb. The thirty-second cleaning of the area with a small sponge on the end of the stick is always one of the worst parts of this process for Benjamin and today was no different. He squirmed and yelled for the nurse to stop and begged for a break. Unfortunately if they stop cleaning for a break they'd have to start the thirty seconds all over again. After the area had been sterilized and had dried the nurse inserted the butterfly needle into his port and to our surprise he giggled. In the nearly thirty times his port has been accessed I've never been witness to that reaction and judging by the look on the nurse's face he was also caught off guard.
His blood was drawn and sent for testing with the goal of identifying as well as ruling out the cause of Benjamin's fever. The nurse explained to me that while they'd be looking at all of his counts, in particular they'd be looking at his white blood cell and neutrophil levels as cancer patients like Benjamin, after contracting even a common cold, are at risk of something called neutropenia which, as I understand it, is a condition that inhibits the white blood cells from being able to fight off a bacterial infection.
Benjamin was given a dose of off-brand dose of acetaminophen as a result of the ongoing Tylenol shortage in Canada, to help manage the fever (as a result of his diagnosis he is unable to substitute Tylenol for Advil, Motrin or any other brand of ibuprofen). A second nurse kindly offered him an apple juice chaser, noting that the cherry taste isn't pleasant. As the nurses were tidying up and getting ready to leave the room they chatted amongst themselves. One said to the other that Benjamin didn't seem to be showing any signs of sepsis. Sepsis. The word hit me like a ton of bricks. At the time I'd only ever known of one such case and sadly that story ended with a worst case scenario. Once they left that brief exchange between nurses played over and over again in my head. I tried to put it out of my mind by cozying up with Benjamin in his pint-sized hospital bed and watching a show that was explaining the difference between crocodiles and alligators. I didn't know the difference so I zoned out and gave it my full attention.
Several hours later we saw the on-call oncology fellow who arrived to perform a complete exam. Thankfully the acetaminophen had had the desired effect and his temperature slowly began to come down though still hovered above what was considered a fever. She let us know that his blood counts were good and that they didn't suspect neutropenia which was good news. There was no further mention of sepsis, also good news. Before she left she told me that she was going to order a COVID test.
An hour or so later the nurse arrived to check Benjamin's vitals and to ask him if he preferred a brain tickle (nose swab) or spit test. Having never been offered the choice, he chose spit test without hesitation. She returned with the tiny cup and funnel and showed him what to do and what line his spit had to reach. He treated this task like it like it was a fun game as opposed to the fear I've seen in his eyes in the past when he catches the first glimpse of the nasal swab.
A while later we were visited by the Emerg doctor. I've learned that it's hospital protocol to have the Emerg doctor bless a patient's release so to speak as within the Emerg department the child is primarily within their care as opposed to within the care of Oncology. She performed her own exam and told us that she was going to leave to prepare his release papers.
As we waited we heard an announcement come over the intercom asking nurses to report to the trauma room. From where our room was located I could see where two hallways converged through a crack between the closed door and the door frame. It looked like a mass exodus with nurses in scrubs filing towards where I imagine the trauma room was located and while our situation is less than ideal I thanked our lucky stars that our child was calmly and sleepily having his fever slowly come down in the bed next to me.
It was over two and a half hours later that a nurse poked her head in the room and said that she thought we'd been discharged hours ago. I told her we were waiting on the signed discharge papers and a nurse to remove the butterfly needle with the tube that was connected to Benjamin's IV pole. She apologized and hurried off and a second nurse returned minutes later, providing another apology. She quickly removed his butterfly and handed me the papers, giving me a brief run-down of what to do if his fever persisted or if any new symptoms began before she was out the door.
At 11:40PM I texted David that we were on our way home. Once again I glanced in the rearview mirror at every red light to see if Benjamin was able to close his eyes. Eventually I looked back and saw him sleeping soundly. When we got home I carefully unbuckled him from his car seat, put the hospital backpack on and lifted him into my arms. As we walked up the front steps I could see David on the other side of the storm door, our sleepy nine week old golden retriever in his arms, waiting to welcome us home.
Benjamin asked for a snack and once he was seated at the kitchen table, food and water in front of him, telling David about the day's hospital adventures, I stood in the narrow hallway of our house between the kitchen and the front door and broke down. I collected myself as Benjamin finished up at the table and was grateful I had the dark of night to hide my crying eyes from him. I have nothing against showing him that it's ok to have big feelings and to cry, but not about this. He's perceptive, sensitive and empathetic far beyond his years and it would kill me to ever have him console me over his fight.
David and I helped him wash up, put on fresh pyjamas and crawl into bed. David laid with him until he fell asleep. As he did I washed the hospital off me in a long, silent, tear-filled shower while hoping with everything I had that by morning his fever would break and we could put the day's scary and stressful events in our rearview.