The days leading up to Benjamin's first chemo appointment of the Maintenance arm of his treatment were eventful to say the least. The Thursday before was when we found out that Benjamin's cancer wasn't necessarily inactive, that the dermatology team would need to examine him and potentially do a biopsy to rule out skin LCH and that a regrouping of his complete medical team was required before they could determine if he would graduate on to maintenance or not. By the end of the day Thursday we learned that there would be no resolution as to whether Benjamin's cancer was metabolically active or not as it depended which doctor you asked, that it was very unlikely that the LCH was affecting his skin and that he would be graduating to maintenance.
I was depending on Friday to be a day to process everything that had happened the day before, however on Friday Ella developed a fever of 102℉ and we of course kept her home from school. Saturday morning appeared brighter at first glance. Ella's fever had broken and the weather was sunny and spring-like. Before we even headed downstairs to breakfast David developed severe chest pains, to the point that any movement took his breath away. We called Mimi and she arrived shortly after to take care of Benjamin and Ella while I took David to the Emergency Room. After two EKGs, two blood tests, chest x-rays and an exam he was diagnosed with Pericarditis which simply put is inflammation of the sac around the heart that can result from a viral infection. Six or seven hours after our arrival to the ER we were sent on our way with a prescription for a heavy dose of ibuprofen to be taken three times daily for two weeks. By Sunday morning, two pills later, David was feeling less pain.
Unfortunately Sunday morning is when we noticed red spots around Ella's mouth. She sometimes gets them after eating but they're typically gone within ten or fifteen minutes but not this time. A few hours after they appeared they were still there and we noticed that she wasn't interested in a snack or having a drink. While David held her, I looked inside her mouth at the back of her throat and noticed two or three sores. Her symptoms were exactly as Benjamin's had been when he was about her age when he came down with Hand, Foot and Mouth Disease. At that point we knew she'd be home from school for at least a few more days to make sure she was feeling like herself and was no longer contagious.
Later that same day David developed severe signs of a gastro infection, or possibly a bad reaction to the prescription medication he'd started the day before. He retreated to our basement, where we have a full bathroom and a bed, for the day and slept there that night to keep him separated from the rest of us, especially Benjamin who is immunocompromised. Meanwhile, on the main floor and upstairs I had all of the windows wide open and did my best to keep as much distance between Benjamin and Ella so that she wouldn't pass along her HFM to him.
On Monday Benjamin went off to school as planned, I kept Ella home with me and David had a virtual doctor's appointment to determine whether his symptoms were viral or a result of his meds and get advice as to what his next steps should be. Throughout the day Ella began to return to her 'whiskey in a teacup' self which felt promising.
That night David and I agreed that even though his condition had improved a bit he couldn't and shouldn't come to Sick Kids with Benjamin and I the next day. If his symptoms were the result of something viral we didn't want to potentially expose any patients at the hospital to whatever he had.
In terms of childcare, what normally would have consisted of walking Ella to school while we took Benjamin to the hospital changed to Mimi having to come into our virus-ridden household to care for her the whole time we were gone. Mimi had to cancel her shift at the hospital (she's a doctor that currently assists in surgery), David continued to recover in the basement and I took Benjamin to Sick Kids for his first Maintenance appointment on my own. Though I had taken him to many, many appointments solo in the past I had gotten used to David and I taking him together since the single caregiver rule had been lifted in recent weeks.
I didn't sleep much Monday night. I never do the night before Benjamin has chemo but thankfully I'm the only one. As I've said many times, I'll shoulder all of the worry and anxiety if it means that Benjamin doesn't have to. He's doing more than enough having to fight this battle.
In the morning David was feeling much better and Ella seemed back to feeling like her healthy self. To be on the safe side we chose to keep her home one last day so Mimi arrived bright and early to care for her so that David could work while Benjamin and I headed to the hospital. On our way to the car we ran into one of our neighbours who has the sweetest dog that Benjamin adores. As he was patting him he told the dog's owner in his signature chipper tone all about how we were going to the hospital because it was a chemo day and how now he only had to go every twenty-one days instead of every seven days. The way he talks about his cancer and his treatment so positively, so confidently melts my heart and breaks it at the same time. On the one hand I'm so proud of how well he understands what's going on in his little body and what he needs to do to get better but on the other it kills me that he has to know anything about cancer and cancer treatment at the age of four.
After parking in the underground parking garage beneath the hospital we masked up and I made sure Benjamin's cape was securely fastened around his neck so that Benjamin the Brave could take on this next phase of treatment. We headed up the parking garage elevator to the lobby for screening and then up the atrium elevators to the Cancer Clinic. I checked us in and realized then that I'd forgotten my phone in the car. My Notes app is where I keep all of my questions for the doctors and nurses, in addition to occasionally needing to dial David in to important conversations with the medical team. Being that we'd just been then a few days ago where we'd had big questions and big conversations, I figured I could ask any remaining questions from memory and that I wouldn't need to call home.
Our first Maintenance appointment was run in a different order than the previous twelve Induction appointments. Shortly after arriving, instead of being called in to the Orange Pod for vitals and measurements we started by going to the IV room for Benjamin's butterfly to be put in and his blood drawn. For the first time since his second round of chemo our little champ got his butterfly and had his blood test in a seated position as opposed to doing it lying down. While there was the typical pre-insertion freak out, he recovered quickly and as soon as we were told to head back to the waiting room he was running and smiling, eager to start playing the LEGO Marvel game at the Playstation console.
I have never been a gamer and my experience is limited to Duck Hunt, the original Nintendo Super Mario game and Mario Cart with the occasional Wii tennis game thrown in. Benjamin was patient and took the time to explain to me which buttons controlled which actions and when to press what. This was typically something he and David did together to pass the time at the hospital but as silly as it may sound, it felt really good to be included in something he enjoyed so much.
Shortly into our game we were called to the Orange Pod where we were greeted by Benjamin's nurse. After recording his vitals, measurements and reviewing his medication with me she disappeared saying she had something for him. When she returned she gave him a still-in-the-plastic 1992 Marvel comic featuring Captain America. She explained that her husband had a side hustle selling comics and that she'd brought this one especially for him. He was over the moon saying proudly over and over, "This is my very first comic!".
In the exam room we were seen by one of the other three LCH oncologists at Sick Kids. I asked if she'd be our doctor going forward and she explained that she wouldn't but that we'd always see one of the three of them during our time in the Maintenance phase. She was extremely thorough in her exam which I really appreciated, asked good questions and answered all of mine. When she was finished we headed back to the waiting area and it was back to playing the LEGO Marvel game.
When his name was called over the intercom to come to the IV room, Benjamin was disappointed at having to stop playing but he didn't tense up the way I'd noticed he would the past few appointments. I wondered if this was because he'd gotten his butterfly in right off the bat and knew all they'd do now is attach his chemo drip into the tubing.
Once again he was fine with a chair and didn't ask for the bed. He sat on my lap while he received his chemo, calmly playing on his tablet. As we were sitting, the pharmacist arrived with a new series of weekly medication schedules that we keep on our fridge, religiously checking off each dose to ensure we never double-dose or miss one.
When it was time for his butterfly to be removed he fussed and tensed up but his nurse was amazing, distracting him with questions about his game and explaining what she was going to do before she did it. For the first time in a long time he allowed the nurse to use the special wipes in the purple packages that remove the stick from the bandage that holds his butterfly in place making the removal painless.
Though the process we'll be following for Maintenance takes a bit longer as there are more steps (IV room, Orange Pod, Exam, IV room as opposed to how it was done previously, Orange Pod, Exam, IV room), Benjamin seemed calmer, less anxious. I'm hopeful that this will continue with him getting the butterfly in right after we arrive at the Cancer Clinic. As I explained it to him, more steps in the process means more opportunities to play LEGO Marvel.
Before leaving the hospital we stopped off at the gift shop. I told him his mission was to find something unicorn-themed for his cousin's upcoming birthday. He chose a plastic bendy toy that I told him would make the perfect present topper. As a reward for kicking off Maintenance with such bravery I told him he could choose a book for himself. He chose one called 'Does it Fart?' which is a book about animals that explains why they fart or don't. At least we're learning about different digestive systems in an entertaining way!
All in all round thirteen of chemo, the first round of the Maintenance phase, went better than I could have expected, especially considering I didn't have the in-person support from David I'd come to appreciate and rely on.
Once home, it was safe to say that Ella was back to feeling 100%. Her five days home to ensure she wouldn't be contagious anymore were coming to an end and both she and Benjamin would be off to school together in the morning. David was also feeling much better and was back to eating a drinking fairly normally without any repercussions.
Wednesday morning, after dropping the kids off at school, David headed out for a full cardio work-up, something that had been arranged by the hospital before he'd been discharged. Once it was completed he was told that he'd receive a call at 9AM on Friday from the cardiologist with the results. More waiting on important test results. I worked hard and re-focused my attention to the fact that our kids were both happily back at school full-time and that David was no longer experiencing any chest pains or gastro infection symptoms.
Around 9:30AM Friday morning, after drop-off, I was sipping my coffee in the living room when I heard the 'THUMP, THUMP, THUMP' of feet pounding up the basement stairs. David breathlessly gave me the news that the cardiologist had said that he was in perfect health. He didn't see any signs of trouble and that the results didn't show any indication of Pericarditis. It was of course the news we'd been hoping to hear, especially going into the weekend with the Sporting Life 10k in support of Campfire Circle coming up on Sunday. Our Benjamin the Brave team had been fundraising for weeks and David was planning to run, something he was looking forward to doing to honour Benjamin's fight. The fact that the cardiologist gave hime the green light to run as planned was just icing on the cake of the clean bill of health.
I'm just thankful that week is behind us and am hopeful that the universe cuts us a break, at least for a little while.
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