We were off to the hospital the morning after receiving what felt like devastating news that we'd be repeating the first phase of treatment for a second time. Thankfully we had special permission so that both David and I could attend this appointment together. We'd be getting the full download of information from the oncologist and we were hopeful he'd be able to provide some context as well as answer the questions that the fellow had not been able to the day before.
The plan was to do things slightly out of order from what we'd grown used to. We started with Benjamin getting his butterfly put in and doing his blood draw as soon as we arrived. This was followed by his vitals and measurements check with his nurse in the orange pod. It was here that we got our first piece of good news of the day: the one-parent-per-patient COVID restriction had just been lifted. That meant that going forward David and I could attend all of Benjamin's appointments together.
The news brought me to tears. It hadn't crossed my mind that there might be a time where I wouldn't have to take Benjamin to all of his appointments on my own. I hadn't ever let myself consider what sort of relief it would be to have David's support live. After the months I've spent at Sick Kids with Benjamin, hearing all of the news from the doctors and having to relay it all to David, to have to be the one to tell him that our son has cancer, learning the medical language, figuring out how everything works and where everything is, all on my own, this felt like a huge shift.
Next we were assigned to an exam room where we waited for the oncologist and the fellow to arrive. With COVID protocol having been in place for so long there are never enough chairs in the rooms for these special exception two-parent visits. Benjamin sat on David's lap playing his game while I opened up my phone to Notes with my prepared list of questions and got out my pen and notebook.
In the exam rooms you can hear the faint approach of footsteps followed by seeing the shadows of feet under the crack of the door when someone, usually the doctor, stops in front of it. My heart always seems to pick up the pace when I notice the shadows. He always gives a light knock before slowly turning the knob and entering the room. He calmly greeted us and walked over to take his seat at the desk next to me, the fellow standing across the room next to the exam bed. Meanwhile David got Benjamin set up with his noise cancelling headphones.
The oncologist opened the conversation as he always does, asking how we're doing. I never know how to answer. He went on to say that while Benjamin's CT scan results showed a significant decrease of the cancer, they weren't "pristine". He re-iterated that we'd be repeating Induction a second time. He paused and then told us he was happy about that.
Given that David and I had received the news that we wouldn't be graduating to the next step in Benjamin's treatment the day before and had had quite the opposite of a happy reaction, we were shell-shocked. He went on to explain.
A second round of Induction will help to reduce reactivation of the cancer by 24%. Without this additional round we'd be facing a 52% chance of the LCH coming back but with it, that percentage is reduced by nearly half to 28%. He went on to explain that if we managed to avoid reactivation(s) of his cancer that the likelihood of late onset complications such as Diabetes Insipidus, neurological complications, etc. would also be reduced.
We learned that the cancer had decreased by approximately 70% between December 30th when his first CT scan was performed and the one he had on March 1st following the completion of his fist round of Induction. We had an opportunity to view the two scans side by side to see the difference in the bone damage which the oncologist described as "quite extensive" in reference to the first CT.
We'd never seen the first scan and to be honest I was relieved. It was shocking and extremely upsetting to see exactly what was going on below the surface of our sweet guy just ten weeks earlier. If that image hadn't been coupled with the image showing the significant decrease, maintaining hope and a positive attitude would have been a much tougher battle.
In other good news, the oncologist explained that the decrease in the mass tells us that the LCH cells are responding to the treatment. To us it means we're progressing in the right direction. We have hope that another round of Induction just might get us to the "pristine" CT scan results that we're wishing for.
And the wins just kept on coming. Benjamin will be able to return to school three days a week following March break. Though both his chemo and his steroids compromise his immune system, he's on a reduced number of days of steroids than he was before. Admittedly the government's lifting of the mask mandate immediately following March break has us quite anxious as we know of many families that will be travelling and visiting. That said, we were relieved to receive communication from Benjamin's school that based on what the President and CEO of Sick Kids has said about revisiting "the use of masks in schools about two weeks after students return from March break because public health an then assess trend lines in COVID-19 cases" they will be taking a more gradual approach to lifting the mask mandate.
This feels a lot more comfortable to us. We're so grateful to be in a school that truly cares so much that they consider both the families who are ready to move away from masks as well as families like ours with an immunocompromised child. Because of the gradual approach, our little guy, the one that desperately wants to return to any sense of normalcy, the one who has had to forego so much, will have the opportunity to return to his friends, his teachers and to learning as safely as possible.
Overall we received lots of good news, encouragement and so many reasons to remain positive and hopeful. The context and the benefits outlined to us by Benjamin's oncologist made such a monumental difference in the way we received the news that we'd be holding for a second round of Induction instead of moving forward to the Maintenance phase.
After our meeting with the oncologist it was back to the waiting room. Benjamin bounded over to the gaming screens excitedly and very loudly telling David what sorts of games they could play. They chose the Playstation console, a first for Benjamin. Going forward very few things will rival playing a game featuring Avengers Lego characters with his dad (his hero and his idol - full credit to David that when Benjamin grows up he wants to be a dad...in addition to a firefighter and Santa Claus).
A while later we heard, "Benjamin to the IV room, Benjamin to the IV room" over the loud speaker. He groaned until he remembered his butterfly needle was already in his body and all they had to do now was attach the vile of chemo and start to administer the medication.
David stood along the wall by the window. I know this was his way of saying he knew I had this and let me do all the things I'd learned over the past weeks that have worked to keep Benjamin happy and distracted. I put on his noise cancelling headphones and turned up the volume on his table. I tucked Sidekick Bunny under his arm. I opened the zippers on his Captain America port t-shirt. I stood at the head of the bed, my cheek against his and attentively watched the screen as he said, far louder than necessary thanks to the noise cancelling headphones, "Mama! Watch this! Mama! Look at this!" He said the words over and over causing David and the nurse to laugh.
Seven minutes later we were out of there and on our way to Starbucks for a treat and to pick up Benjamin's new prescriptions at the drug store. The prescriptions took a while to be filled so David took Benjamin down to the car to eat while I waited. After months of solo parenting at the hospital, even having that as an option, for one of us to do this while the other did that, felt like a huge luxury.
By the time I met them, not only was Benjamin settled in the car with his treat but David had also investigated and purchased the parking pass our POGO nurse told us we qualified for which reduces the cost from $25/day to $10/day. Finally we were on our way home.
We were breathing a little easier than we had been the day before. Context. What an incredible difference it made for us in this case. The difference between yesterday's total breakdown as we felt like we were facing a setback, versus today, feeling confident that we taking the right approach for Benjamin's longterm health. Context. In this situation it made all the difference to our world.
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