Benjamin's first round of chemotherapy was scheduled for Thursday, January 20th. While his oncologist submitted an urgent request to get him on the board for surgery to have his port-a-cath (or port) implanted before then, Toronto was hit with a massive snowstorm. Surgeries that were more time-sensitive and carried greater urgency than ours were postponed and unfortunately that meant that Benjamin's first round of chemo would be administered by IV. I say "unfortunately" because the IV method, while effective, can be more traumatic, is more painful and comes with more risk - if it were to ever come loose, the chemo medicine could burn Benjamin's skin.
Two days before his appointment we were contacted by the oncologist. Benjamin qualified for a trial and he wanted to discuss it before Benjamin received his chemo treatment. Due to this very unique circumstance both David and I were given special permission to accompany Benjamin into the hospital which was a first.
This put me at ease in some ways, knowing David and I would have each other to lean on, in person. It also sent me into an anxious spin as I wondered how quickly we'd need to make our decision about the trial and just the sheer weight of having to make a decision that would most certainly impact our son's life.
Over the phone I was given a very brief overview of the trial. This was going to be the fourth iteration of this particular study. At the start of the third iteration the standard of care for patients like Benjamin was 6 months of IV chemotherapy. Half the patients in this study were given 6 months of IV chemotherapy and the other half received 12 months of the same treatment. The findings showed that those patients that had 6 months of chemo treatments had a ~40% chance of having the LCH return and/or having late effects like Diabetes Insipidus and neurological problems while those that had 12 months of the same treatment had a ~25-28% of reoccurrence and/or late effects. The standard of care following the third iteration is 12 months of IV chemotherapy which is what Benjamin would be receiving if we declined to participate in the fourth iteration.
This time, instead of just two variable groups there would be four. Benjamin would be randomly placed into one of the following groups with a 25% chance of landing in any one of them:
IV chemotherapy for one year (the control group and current standard of care)
IV chemotherapy + oral chemotherapy medication for one year
IV chemotherapy for two years
IV chemotherapy + oral chemotherapy medication for two years
As we walked into the hospital on Thursday morning I felt uneasy but also more supported than I had been in any previous visit. Having David there, literally holding my hand as opposed to figuratively made such a difference. We did our COVID screening, put our hospital-issued masks over the ones we'd worn in and made our way to the yellow elevators in the atrium. Benjamin pushed the button and excitedly explained to David how we each had to guess which elevator we thought would open for us. We rode up to the eighth floor, looking through the glass walls and listening to Benjamin talk a mile a minute about how things on the ground floor were getting smaller and smaller. The doors opened and we walked down the long hall, floor to ceiling glass on either side with views outside. Turning toward the Burton Wing, Benjamin pointed out each piece of art displayed in the hallways. On one particular wall is a row of 3 paintings of hearts. He told David his favourite was the pink one and wouldn't move on until David shared his favourite.
When we arrived at the check-in desk of the Sears Cancer Clinic, Benjamin and David took a seat in the waiting area while I checked us in. Shortly after we were called in by the oncologist. We gave Benjamin his tablet and noise cancelling headphones and listened to the doctor as he described the trial. We learned that this fourth iteration had been running since 2013 and Europe, the U.S. and Canada had all been participating and that Sick Kids had just received the green light to join. Benjamin would be the first patient at Sick Kids to be part of the trial if we were to say yes.
I naively thought we'd have time before having to make a decision but we learned that we'd have to decide before Benjamin could receive his first chemo treatment that morning. Risks, rewards, costs, benefits. They were all running through my head at lightning speed while simultaneously turning my stomach in knots. Finally the doctor said a few things that gave me some peace:
No matter our decision that day, the first six weeks of his treatment would be the same
We could pull out at any time
If we said no that day we couldn't change our minds later, but if we said yes we could most certainly change our minds
The trial would not be blind - we'd know which of the four groups he'd be randomly selected to join
We Face Timed my mother-in-law, a doctor, who asked questions we wouldn't have known to ask, such as how often the results were being reviewed, whether the review committee had had any concerns, etc.
Once all of our initial questions had been answered, the doctor left the room so that we could discuss amongst ourselves. We agreed to participate knowing we'd have six weeks to deep dive into the past studies, to learn more about the oral chemotherapy drug (which isn't new - this wasn't a drug trial - it was just new to us) and to formulate and ask questions.
From there, Benjamin had an exam, his vitals were taken the doctor gave us the ok for him to receive his first chemo treatment that day. We went back to the waiting area where we met with the pharmacist and her associate. Benjamin, having already been poked and prodded by three people, wasn't interested in having them join us for a chat. He wanted time to play games on his tablet with David. The pharmacist handed us his prescriptions so that David could take them down to the Shoppers Drug Mart in the hospital to be filled while I waited and played with Benjamin. She said she'd come back to talk to us after Benjamin's treatment.
Shortly after David left, Benjamin and I were called into the IV room. As he walked in, several of the nurses told him how much they liked his superhero cape. The attention made him shy, something that hasn't happened often in the past but seems to be happening more frequently over the past month or so.
They had him sit down in a chair. I had pictured one of those padded armchairs you see in the movies but this was just a regular chair, much like the ones you'd see in the waiting area of a doctor's office. I was happy I'd packed a pillow to place behind him to make him more comfortable. I handed him his tablet and asked him to put on his noise cancelling headphones. I've found they serve a dual purpose: the hospital staff isn't forced to listen to whatever game sound effects are going off or children's movie he's watching but more importantly in these types of situations, it gives him the ability to block out what's going on around him.
I let the nurses know that he tends to do well with the freezing spray they keep on-hand and use before putting in an IV needle. Once she was able to locate a vein, which took some time, she began spraying. Benjamin never even looked up from his tablet. The nurse looked at me with raised eyebrows, I shrugged and smiled. The noise-cancelling headphones were working their magic.
I asked the nurse how long the chemo treatment itself would run. I was shocked to hear it would only be about five minutes. She explained to me that because we were doing this first treatment by IV and not by port it would be done by gravity. Apparently it used to be done by pressure (a nurse would insert the chemo into the line by syringe) but at another hospital, I was assured not at Sick Kids, the IV needle had been wrongly inserted into the patient, the chemo was then administered by pressure and travelled to the spine resulting in a fatality. Not the story I wanted to hear as my baby boy was hooked up to an IV for his first round of chemo. Thankfully David returned then from dropping of Benjamin's prescriptions to the pharmacy.
A second nurse came over and while the first held the line high above the ground, the other sat down beside Benjamin and kept her eyes glued to the tube connected to his IV as she watched the chemo flow steadily into his vein. She explained to me that with the gravity method, if the IV was in the wrong spot that the medicine wouldn't flow, therefore greatly reducing risk.
Benjamin got through round one like the superhero that he is. No complaints, no tears (but either or both would have been understandable and perfectly ok). Five minutes after his session had started his IV was removed and we headed back out to the waiting room to meet with the pharmacist to get the information about the medications we'd be headed downstairs to pick up. She gave us weekly charts that detail when and how much of each medication to give. She ran through the long list of side effects of each one which included constipation, nausea, crankiness, increased appetite, puffiness of the face and tummy, weight gain, stretch marks and insomnia. My hand was cramping as I hadn't taken such detailed notes by hand since university.
Finally we were sufficiently mentally and emotionally exhausted and free to go. We walked back towards the elevators, past the heart paintings and saying which was our favourite, Benjamin running to make his cape fly in the breeze he created behind him while holding David's hand, he pushed the elevator button and we guessed which one would open for us, looked out the glass walls as everything on the ground floor got bigger as we went down. Rituals and traditions that evoke wonder and excitement in Benjamin. It's the one given, an element of comfort, one element of certainty when nothing else on this journey seems to be.
Speaking of rituals and traditions, next up was Starbucks. Benjamin and I waited in line while David headed down the hall to pick up the medications. I love listening to his loud, excited babble as he runs through all of the treats before choosing one. That day he chose an oat bar. Of all of the sweet treats...I guess there are some surprises in rituals and traditions.
It felt nice to drive away all together. We'd all experienced this milestone as a family (minus Ella who I'm sure had much more fun playing at home!). When we got home we set up the medications, we put the weekly calendar up on the fridge and anxiously waiting for Benjamin to exhibit any side effects. The only one we'd see following that first round was insomnia and luckily only on that Thursday night. While Benjamin was certainly restless and asked every five or ten minutes if it was morning yet for the whole night, he took it in a stride. As for us, we brewed an XL pot of coffee the next day.
All in all, it had been a good day.
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