After round two I had a lot of anxiety in the week leading up to round three. As much as I was amazed and relieved that Benjamin had seemed to be able to move on quickly from being so upset in the hospital to being his happy self by the time we got home, I didn't want him to feel any negativity leading up to and during this next round of treatment.
A few days before round three I emailed his case nurse and also called the Cancer Clinic check-in desk. I explained that our round two experience had been quite a bit longer than I'd been told to expect and that Benjamin had grown quite anxious as we waited. I told them that by the time Benjamin was called in to receive his chemo I was fairly certain that the numbing cream from his Emla patch had lost its effect. I also mentioned that by then he was pretty upset and that had made things more difficult for both the nurses and myself. I asked if I had maybe gotten the appointment time wrong as we were the first ones in the waiting room but weren't seen for his vitals check or by his doctors for an hour and a half after our arrival. They explained there had been a mix up the week before and we agreed to adjust the appointment time by half an hour. This made me feel a bit better going in to round three.
That morning, instead of me driving Benjamin and I to the hospital, David insisted on playing chauffeur. Right off the bat Benjamin was excited for a family adventure to his appointment though he made sure to say that he'd miss Ella. Not only did this take the stress out of accounting for extra time to find parking and to walk from the lot but it meant that I could focus my efforts in the car on keeping on par with Benjamin's excitement level without also having to safely driving the car. While I'm always happy to mirror his energy as I think it helps us both to stay positive, if I'm honest, it's exhausting. For him, his energy is pure and unfiltered. For me, on treatment days I'm like a duck on a pond, calm and happy on the surface but beneath the water there's a lot going on.
David dropped us off right at the revolving door, a highlight of every visit, and gave us both huge bear hugs before Benjamin grabbed my hand yelling, "Come on, Mama!". We headed to the COVID screening desk, got our hospital issued masks and made our way to the yellow elevators in the atrium. Benjamin pushed the button with his elbow so as not to "catch any germs" and we guessed which one would open for us. I almost never win this game.
We checked in at the Cancer Clinic desk and sat down to wait. No sooner than I'd pulled Benjamin's tablet out of my bag and got a game going we were called in to have Benjamin's vitals and measurements recorded. From there we went straight into an exam room and were quickly visited by the doctor. He delivered good news: Benjamin's blood pressure had returned to the normal range this week. He performed his exam and told us that everything looked good and that we could proceed with the round three chemo treatment as planned. He also let us know that Benjamin's CT scan following the first phase of his treatment plan had been booked a few days after he was scheduled to receive round six. The purpose of this scan would be to see how well Benjamin's body was responding to treatment and the results would determine if we will be able to reduce his chemo treatments from once a week to once every three weeks. This appointment will be a huge milestone for us and the anticipation of it comes with a host of feelings:
Hopeful that the treatment has been effective and that the doctors are confident in graduating him from Induction to Continuation, a less intensive phase of treatment
Anxiety that if the treatment has been effective that we'll learn which of the four groups he'll be randomized to for the trial AND anxiety that if the treatment hasn't been effective that we'll continue weekly chemo and high dose steroids for another six weeks at minimum
Pride that this little person who's just four years old has gone through all this exhibiting courage, bravery and his signature Benjamin grin (of course not always - understandably there have been tears and tantrums along the way but that's also part of being only four)
Worry that the extreme shyness he's been exhibiting will make his re-introduction into school and any sort of (limited) social settings difficult
Fear that there's still a pandemic going on, that he's not of the age that can be vaccinated and that he's immunocompromised yet will (hopefully) be returning to school AND fear that he'll be under someone else's care whose attention will understandably be divided and that the onset of something serious like a fever will be missed
Grateful that we have an amazing POGO nurse (Pediatric Oncology Group of Ontario) assigned to our case who will help us to prepare his school faculty for his return, including what to monitor closely for, when to escalate, providing information about his port, etc.
Excited at the idea that this next phase could be the beginning of the end of this difficult chapter in our lives (fingers, toes and everything else crossed)
Fortunate that we've received the best medical care and have been so supported by an incredible network of family, friends and neighbours - we couldn't have done these first months without each and every one of you cheering us on
And honestly, every feeling in between (ask me tomorrow and I'll probably come up with ten more...)
We were sent back to the waiting area once we finished with Benjamin's doctors and waiting for the chemo to be mixed up. In going through this experience I've learned that that can be one of the reasons for a longer than expected chemo appointment. Chemo doesn't have a long shelf life and it typically expires a few hours from when the treatment is administered so it's not ready-to-go when the doctor gives the green light. It's specially mixed for each patient on that day. If the hospital is particularly busy that day or if they are short-staffed, the wait is longer.
To our surprise, "Benjamin to the IV room please, Benjamin to the IV room" blared over the loudspeaker fairly quickly from the time we took our seats in the waiting area. My anxiety started to build on the short walk down the hall after last week's experience. I was hoping with everything I had that this week would be better. That this little person who trusts me to care for him and keep him from harm wouldn't feel pain. That I could keep it together if it didn't go well so that he wouldn't feel any added fear or, to be honest, guilt that he'd upset me. He's wildly emotionally intuitive for his age and so sensitive that it's quite possible if I was visibly upset he'd apologize for making me feel sad and that was the last thing I wanted. None of this was his fault and he doesn't need to carry additional burdens.
To compensate for my anxiety I started asking him questions in an upbeat tone. Things like, "What game do you think you'll play when you're getting your medicine?", "Which car are you going to choose to race - Lightning McQueen? Mater? Cruz?" (he's a big Cars fan), "What kind of stickers do you think the nurse will have after you get your medicine?", etc.
When we got to the door I explained to the nurse that last week we'd learned that he was more comfortable lying down for his treatment than sitting in a chair, if the bed was available. It was! I started getting Benjamin set up. I took off his Emla patch (he prefers that I do it rather than the nurse). I lifted him onto the bed and helped him to get comfortable. I got out his noise canceling headphones and plugged them in to his tablet and turned up the volume slightly on his game. From occasionally using these at home I've seen that he seems to be able to block out his surroundings more easily when they're on. It was like magic. He seemed to instantly zone in on his game, ignoring what was going on around him including the nurse preparing everything she'd need to administer his treatment.
The nurse started to clean his port with the little sponge. Benjamin asked a couple of times if she was going to put the butterfly in yet. He seemed satisfied when we'd say "not yet" and go back to playing. When she was finished cleaning, the nurse looked at me and asked if she should do a countdown or just put the butterfly in. I told her just to do it unless he asked. He noticed her bringing the butterfly over and asked if it was time. I told him it was and he closed his eyes tight, bracing himself for the painful experience he'd had the week before. In a fearful voice he asked if it was in yet and when I told him it was he immediately relaxed, smiled and said with a giggle, in a voice that was way too loud thanks to his headphones, "THAT DIDN'T EVEN HURT!". I felt a wave of relief. Only then when I relaxed did I realize I'd been tensing my entire body and clenching my teeth.
Ten minutes later it was all over. Benjamin was choosing one of the "special" Cars and Mickey Mouse band-aids I'd brought to cover his port after the prick from the butterfly (the hospital only has generic band-aids) and the nurse was bringing over the Tupperware container of stickers for him. He found a Ninja Turtles one and was thrilled. He's recently started reading David's old Ninja Turtles chapter books and playing with his vintage action figures.
This time he practically skipped a happy skip out of the IV room and down the hallways to the elevators. He excitedly talked about a Starbucks treat but I told him a had something different in mind for today. He asked if we were going to the gift shop and I said no. He asked if we were going to the Shoppers Drug Mart and I said no. As we rounded the corner to our destination, he yelled, "ARE WE GETTING ROBOT ICE CREAM?!". I smiled at him under my mask and said that we were.
On the edge of the food court in the atrium is a little Yogen Früz stand. You place your order on a screen, choosing your ice cream flavour and toppings and then a robotic arm swings out, picks up the cup, holds it under the ice cream dispenser before swinging over to the toppings that spin around and down a long tube. Benjamin could barely contain his excitement. For me, it was the polite, "Thank you, Robot" he said as the glass lifted and the robotic arm passed him his treat.
David was waiting outside for us to drive us home. Benjamin was over-the-moon explaining how the robot had made his ice cream and how he planned to eat it in the car "BEFORE LUNCH!".
Once he was in his car seat, happily enjoying his well-deserved treat, David gave me a huge hug and whisper asked, "How was it?". I leaned in and said, "Today was a good day. A really, really good day." We drove home together, exchanging smiling glances as Benjamin excitedly chatted away to us from the back seat between scoops of ice cream.
Comments