I debated whether or not to write about our ongoing bout with COVID as it felt less about Benjamin's journey and more about our experience as a family. But the more I thought about it, the more I wanted him to be able to read this one day, to be able to see just how lucky we all are to be so loved and well supported and to be reminded of how strong, resilient and adaptable he has been amidst massive change and disruption.
The weekend following my birthday started off with an amazing surprise overnight getaway to Niagara-on-the-Lake that David had thoughtfully arranged for me, along with my best friend. They had both planned everything with so much consideration to make sure that I would feel safe and comfortable and for twenty-four hours I could almost forget that the pandemic is still very much raging on.
Nearly twelve hours to to minute after I returned home, relaxed and refreshed, Ella spiked a high fever. After a dose of Tylenol and some breakfast she was asking to go outside to play which is very much how her healthy self would behave. A few hours later she seemed warm again but the colour in her usual rosy cheeks had drained and she looked pale. Her energy level plummeted and she got snuggly which was very out of character for this busy little firecracker. We gave her a rapid antigen test and it quickly turned up the dreaded second line indicating that she'd tested positive.
I've heard of a number of families throughout the pandemic who have isolated within their own home but not from one another, resigning to the fact that they'd all get it eventually so it may as well be all at once and all together. That simply wasn't an option for our family. Benjamin's cancer treatment consists of medication that suppresses his immune system which means that he doesn't have the same ability to be able to fight infection as a healthy child. From what I know about kids getting COVID, many develop a fever. For Benjamin a fever for any reason is a trip to the Emergency Room, and that's the best case scenario. It was important to us to protect him as best we could from that point onward even though we knew that a positive test for him may not be far off as he'd spent a large amount of unmasked time being very close to Ella.
David and I snapped into decision-making mode. We were both up to date on the maximum number of vaccinations we could possibly have but David had had COVID back in late December. While research tends to show that added protection may only last for up to three months we figured David may be ever-so-slightly more immune to contracting the virus for a second time than I would be for a first. It was settled: David would care for Benjamin and I for Ella.
David, Benjamin and I all put our masks on and while David held Ella on the couch on the main floor I got Benjamin settled in his bedroom so that I could begin getting the house quarantine-ready. My standard of clean had been compared to that of Monica from Friends, making me the obvious choice to do so.
I began by opening every window in the house, disinfecting all surfaces including countertops, doorknobs, drawer pulls, appliance handles, cupboard doors, vacuuming and washing the floors, cleaning the bathrooms top-to-bottom, putting on the dishwasher with whatever was in there and anything that had recently been hand-washed and left on the counter to dry, putting on the laundry with anything I could find that had been worn and slept on or slept with in the last few days. I used a hand pump to inflate the toddler air mattress that Benjamin would sleep on in the basement and made it up with special sheets, blankets, stuffies and a few of his favourite books. I wiped down and set up his nightlight noise machine, an owl he named Hootie, to make sure his bedtime routine would be as familiar and comforting as it could be. I brought down the child-sized table and chairs the kids use for reading, colouring and occasionally snacking, and set it up with snacks, napkins and grown-up utensils as Ella wouldn't have used any of these. I laid out his medication and the medication tracking sheet we use to make sure we never miss a dose or double up.
When I was finished, I headed back upstairs to tell Benjamin that Ella wasn't feeling well but that there was good news: for the next 5 days there was going to be a boys-only sleepover party in the basement. This went over better than I ever could have hoped. He excitedly yelled down to David the plan as I'd just explained it to him.
I walked him down to the basement and as soon as we reached the bottom of the stairs I could see his eyes darting around, taking it all in. His toothbrush in a cup in the bathroom along with his toothpaste. A grown-up towel for him to use. His special inflatable sleepover bed with all of the comforts of his bedroom and more. The bed where Daddy would be sleeping, right next to his. "Hootie's even here!" he yelled up to David. When he finally slowed down he looked over at me and said, "I love it, Mama, I LOVE it!". I was happy to be wearing a mask so as to not alarm him with the redness and crinkling of my face as I felt the tickle in my nose that happens just before the tears begin to fall. I gave him a hug and went upstairs to take Ella from David so that he could shower, change clothes, put on a fresh mask and head down to the basement to join Benjamin.
Phase I of our plan was in place so it was on to determining how we would keep up this arrangement for the next five days. David's job is demanding and being confined to our basement with Benjamin for the full work-week wouldn't be good for their mental health. After talking it over with Mimi, who is very much an honorary member of our household and who happens to live less than ten minutes away, we decided that David and Benjamin would sleep in our basement but would go to her house every morning and return in the evenings, after dinner and only once Ella had gone to sleep for the night.
Next on the to-do list was notifying the kids' school and each of the departments at Sick Kids that we'd be visiting for appointments in the next week. Even if Benjamin and the parent that accompanies him to his appointments is testing negative for COVID, as a close contact, there are special protocols the hospital has in place. By calling each department in advance they will be able to have an escort at check-in to walk us to the isolation room they've prepared and the doctors and nurses will know to be ready in full PPE before entering our room.
The first appointment of the week was with the staff dermatologist. Though she'd consulted with a resident over the phone after the resident had examined Benjamin she wanted to see him live to determine if there was anything about the rough skin on his cheeks that indicated it was LCH.
Because I was caring for Ella, David took Benjamin to Sick Kids and got to see first-hand the COVID protocols as Benjamin and I had experienced them back in December during the process whereby he was first diagnosed. It was tough for me to be sidelined from the appointment. I do much better when I can be there live, to be there for Benjamin in whatever capacity he needs, to hear what the doctors say first-hand, to ask my questions and clarify the answers if I don't fully understand. I've also found that particularly when it comes to Benjamin's medical care, consistency is so important.
Thankfully that staff dermatologist was able to definitively conclude that Benjamin's skin condition was not LCH and confirmed that the diagnosis she'd suspected several weeks ago was accurate. It was Keratosis Pilaris (KP), a condition that affects nearly 50% of the population and is not harmful in any way.
As the week went on, David and I had our own unique challenges. David's focus was pulled away from work on a few occasions and he occasionally had a guest appearance from Benjamin on his video conference calls. On a regular week night, David always makes a concerted effort to be present with our kids for dinner and bath time and then most often returns to work for several hours. This was made more difficult being that Benjamin was sleeping in his "office".
For me the difficulty was being trapped at home with a sick child. We feel very lucky that both of our kids are very happy most of the time, so when either one is sick, the discomfort they feel that they display through whining, crying and sleeplessness is amplified even more. Compounded with having no one but a fussy toddler to talk to day-in and day-out, as most friends and family work during the day, I was feeling especially alone. I suppose they don't call it 'isolation' for nothing.
Thankfully Benjamin was none the wiser and was having the time of his life at Mimi's house. There he had unlimited snacks, three kinds of ice cream to choose from for dessert, countless opportunities to help with the cooking, baking and gardening and lots of playtime with Daddy's vintage Ninja Turtles action figures. Not only that, but as an added bonus my incredible aunt, uncle and cousins, whom he adores, happen to live across the street from Mimi.
On Day four of five of isolation (day 0 + 4), I had to get out of the house and decided to put Ella in the stroller to take her for a walk. I chose our timing and our route carefully, ensuring we could give anyone we encountered a minimum of six feet of distance. I also had the stroller's rain shield for extra protection for anyone that may pass us.
While we were walking I received an email from Benjamin's nurse. As I read down I felt my eyes get wider, my pace slow and my heart sink. Because Benjamin is a patient of Sick Kids we're required to follow their isolation protocols as opposed to the ones put in place by Public Health. Instead of five days, we were to observe ten. Double the length of healthy families. It felt like we'd been running a marathon and with the finish line in sight, being told to run a second one.
I called David and asked him if he'd seen the email yet. He said no. I advised him to go somewhere in his mum's house where he could yell, "F***!" after reading it because he'd likely have the urge. As predicted, that was the first thing he said after learning about the ten day isolation period.
Once again, we went into planning mode. The kids wouldn't be able to return to school when we'd originally thought. Benjamin would have his second round of Maintenance chemo, fourteenth round overall, and Ella wouldn't be back in class yet. It was another busy work week ahead for David. I was beginning to lose my mind in isolation.
After running our plan by Benjamin's nurse and getting her blessing we decided that Benjamin, who continued to show no symptoms, would sleep over at Mimi's on both Saturday and Sunday and that he would be able to have masked outdoor play with my aunt, uncle and cousins to make sure that Mimi got some down time. David would stay home during the day on Saturday to give me a bit of a break before he transitioned to caring for Ella. I would take a PCR test on Saturday make absolutely sure that I wasn't positive, even though I was completely asymptomatic and continued to test negative with our at-home rapid antigens. As of Sunday evening, Benjamin would come home and from then on he would be in my care until our isolation was over on Thursday. The switch was in large part so that I could take him to his chemo appointment on Tuesday. My PCR on Saturday came back negative so it looked like the plan was a go.
On Monday morning before Benjamin was to come home I was going to go for a masked walk with a girlfriend. To be safe we both took rapid tests and while hers came back negative I got a positive result. In a panic I booked an emergency PCR, drove to the test site and waited the torturous two hours for the results. Negative. I took a second rapid test as we thought I'd maybe gotten a false positive and the second one came back negative. Relief.
Mimi called us later that day to say that they were having so much fun that Benjamin asked to stay over one more night. With all of the stress over the conflicting test results we agreed and decided that I'd pick him up first thing in the morning to head to Sick Kids for chemo.
On Tuesday morning before I left the house I took a rapid test and it came back positive. I took a second one and it came back positive. At this point I'd had two negative PCR test results and three positive rapid test results. Cue massive confusion. From everything we'd heard and read PCR results were the most accurate but what could be accounting for the three separate positive rapid test results?
We didn't want to take any chances, especially as Benjamin had been safely distanced from me while he'd be staying at Mimi's. We decided that David would take a rapid test and when it came back negative he hit the road to pick up Benjamin and take him to chemo.
Once there he spoke to the nurse, to the oncologist and an infectious disease doctor was brought into the conversation to advise us on how to best proceed. Many scenarios were batted around before we landed on a plan. Benjamin would stay at Mimi's for zero + ten days (so, eleven days) from when I first tested positive with a rapid test (Monday). David would care for Ella until both kids could go back to school on Thursday, which was only possible because Benjamin hadn't been home at all during the time I'd started to test positive and Ella had just had and gotten over COVID. I would be confined to our bedroom for zero + five days (six days) for the duration of the isolation period required by Public Health, provided I was symptom-free by day five. At that point I would be allowed to re-enter the world provided I didn't come into contact with Benjamin or the zero + ten days would begin all over again.
For anyone who knows me, I'm a planner and Excel is my tool of choice. This is a simplified version of our twenty days of isolation from May 15th until June 4th:
As I write it's been fourteen long days since the four of us have lived together as we normally would. Fourteen days with six to go before we can welcome Benjamin home (assuming David remains healthy). Safe to say this will have been the longest twenty days of my life and there is a long list of things that I've been mourning as I've been sitting here, alone with my thoughts, in isolation:
I wasn't there for Benjamin's fourteenth round of chemo, the first round in fourteen that I've missed
I wasn't there to comfort him at night when he couldn't sleep after his treatment
I miss him running into our room in the morning, pulling up the blinds and inviting me to watch the sunrise with him
I miss the pitter-patter of the quick steps of his little feet walking to my side of the bed in the middle of the night when he needs a snuggle to help him fall back to sleep
I miss his excited chatter at the table at meal time
I miss his nightly requests to plllleeeeeaaaaaasssssssseeeee play with Ella before she goes to bed
I miss walking them both to school in the morning and picking them up at the end of the day
I'm not the one who gets to comfort hime when he has a hard time going in to school in the mornings; he's had so many start-stops this year that it's been tough to get into the routine
I miss his signature Benjamin hugs, the ones that wrap around you so tightly you can barely breathe but are so genuine and full of love that it's more than worth it
I will be missing being the one to send him off on his very first field trip (though I'm allowed to be out in the world, just not close to him so I may try to take a photo or two from across the street ;)
I can't control the situation, only how I respond to it so while I've mourned and I've missed, I'm shifting my focus to all that we have to be grateful for:
Benjamin's easygoing nature and adaptability
Mimi's generosity and willingness to open her home to our family to keep them safe
My aunt, uncle and cousins' constant offers to relieve Mimi and do so safely and in ways that makes Benjamin feel as though he's won the lottery just by getting to spend time with them (the photo above is from a walk to the nearby creek where they took him to look for treasures i.e. rocks to bring back to Mimi)
Benjamin and David remain in good health
The peace of mind of knowing that Benjamin is comfortable, happy and being lovingly cared for, not to mention being fed better than he ever has been in his life as Mimi is a fabulous cook
The seemingly endless love and support we've been shown by friends and family
The constant willingness of Benjamin and Ella's school to accommodate our needs and the loving sensitivity they demonstrate daily towards our babes
This hasn't been an easy time for our family but, as a book on Benjamin's shelf tells us, could be worse. We have a lot to be thankful for and for that we're truly fortunate. But, I've taken the time to feel all of the emotions, the good, the bad and the ugly, and I'm coming back around to the upside. There is light at the end of this now six-day long tunnel and you better believe I have a few special things planned to celebrate our family reunion this coming Friday.
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