This week like so many others my children go back to in person school. Abby for the first time since March 2020 when the pandemic hit and she went into online learning and next month would mark two years away for Ollie as we basically pulled him out when his intensive testing to get to diagnosis began in October 2019. I'm trying to remember what it felt like to send them both off into the world with no significant fear. I had no idea how our entire life was going to change in mere weeks. The only indicator that anything was wrong was a small bump on his neck that we still thought was a little infection. Maybe that's why I'm so scared now - because I know how it can all change in a moment.
We've debated long and hard what to do about schooling this fall. On the one hand we know that the kids want to go back and need socialization and "normalcy" for their mental health. On the other hand Ollie is still technically immuno-compromised. Even though he's been strong enough to stop his anti-viral medication and have all of the non-live vaccines to-date, he remains at some level of risk for COVID-19, Measles, Mumps, Rubella and Chicken Pox. The oncologist felt that all but COVID were manageable/minimal risks given childhood vaccines are mandatory for kids to attend public school (unless they have a medical exemption like Ollie currently does for the MMR and Varicella vaccines) and we don't often see outbreaks.
Three years ago there was a measles outbreak in the schools causing Ottawa Public Health to crack down and start requiring that parents report their children's vaccinations or be suspended from school. Last year when we got back from transplant there was a chicken pox outbreak at CHEO (nearly gave me a heart attack). Nevertheless the oncologist assured me that for anything other than COVID if Ollie is exposed and we get him to hospital quickly there are treatments we can give him to keep him safe. The same cannot be said about COVID-19. She said, send them back, but watch the numbers and if they rise or there's any at his school, pull them out.
I know this is also a happy moment for them - a milestone - but I've lost a lot of sleep, ran every scenario through my head dozens of times and cried so many tears of frustration and fear. Part of this is the fear of him coming into contact with one of these illnesses. The other part is the fear of returning to "regular" life and somehow the cancer comes back and we're back to battling. You see, it's easier to keep wearing the armour than to take it off, get used to living without it and possibly have to put the heaviness of it all back on again. I think this might be how medical workers battling COVID-19 are feeling right now, too during this fourth wave.
I've also been with him almost every single day (minus the 3 days I had to take Abby to Toronto for her stem cell donation medical assessment and Mario stayed in hospital in Ottawa with him) of the past two years. I've been his mother, his coach, his caregiver, his playmate. I am the keeper of all Oliver medical history (his doctors generally ask me to explain history or point them to the right time in his massive medical chart) and I am the coordinator of his whole life. Keeping him alive and my family intact has literally been my whole life these past two years. I am on the precipice of big changes in my life and my future as his begins again. Also a milestone and cause for joy, but PTSD remains and I now stress more about making plans for the future. Oh the irony of a former strategic planner being afraid to plan! This is all way harder than leaving Abby or Ollie for their first day of daycare or school!
I have zero qualms about leaving them at their schools with the amazing teams there. Ollie's (and Abby's former) school had no cases of COVID last year. A testament to the community and staff's efforts to keep our kids safe. Also, staff and families at his school have helped enormously to get Ollie well and support us these past two years. The principal and her staff are arguably the kindest and most committed team of educators around. We honestly have a dream team around Ollie this year including incredible English, French and Phys ED teachers, and an incrediblly patient and committed EA (who messaged me last year when Ollie went blind and told me she'd get started on learning Braille in hopes of helping him when he got back!) who we know thanks to our 9 years at St. George. Every one of them and so many others at the school sent food to our home to nurture our family, participated in prayer circles, loved and cared for Abby and followed us online when Ollie was sick.
We also have an amazing vision itinerant teacher (who was the first person to reach out to me about getting Ollie into the vision program in June 2020). Also on our vision itinerant team are excellent Orientation and Mobility and Daily Living Skills teachers who will each work with Ollie once a week to help him to continue to learn how to navigate his world blind. Finally, we are blessed to have an occupational therapist, a physiotherapist, a child psychologist and our dependable POGO Interlink Nurse Graham from CHEO also on the team. All of this is mainly because of the blind/low vision program, but also because of his cancer. We are so grateful for the supports available.
Honestly what more could I ask for?! And I asked for a lot and got it all and then some! So you can see he/we will be well supported and I know how invested they are in helping him thrive and stay safe this year. More tears from me, but these ones are of gratitude.
On the Abby side her wonderful resource teacher at her new school who tried to help from afar last year had her in for a tour of the school last week, told her what class she was in and how things would work. We also got to see our dear friend Eleri who teaches there and assured me she was there for Abby, too if she needed anything. This set my tender heart more at ease. More amazing educators and nurturing women to help my kid. Thank God for the village.
I have had to bring my cancer kid into 4 different hospitals' emergency rooms, for clinic visits, for chemo admissions and radiation treatments over the past two years. Every single time it was hard. Gut wrenching often. On most days I was super anxious and had to put on my emotional armour just to walk through the door. If I had had to walk or drive through protestors who could further endanger my child's life, I may have killed someone. And I am not a violent person, but you have read about me going mama bear to save him. I'd do literally anything to protect my family and especially my son who has endured too much pain and sacrifice during his battle with cancer and recovery from stem cell transplant.
This is not okay behaviour, Canada. Peaceful protest is one thing. Willfully blocking people battling death from their lifesaving treatments, shouting at them and spitting at them (especially during COVID, but really anytime since their infection fighting neutrophils are low during treatment) is NEVER okay! I am past the point of trying to give people like this any benefit of the doubt about their intentions or freedoms. This is mob mentality pure and simple and does not belong here (or anywhere really)! Please be human beings not monsters like this!!!
Last week I stood beside Ollie at City Hall during the Candlelighters Childhood Cancer Programs flag raising to mark September as Childhood Cancer Awareness Month. I stood among cancer families who have had unimaginable things happen to them while they battled their child's cancer for YEARS. I was teary as each child there who is a survivor or sibling of a child with cancer took their turn cranking the flag up. I was completely choked up when Ollie was the last to raise the flag with our patient mayor's help. It felt like planting the victory flag after a hard battle won. Just like war. Innocents. Kids who should be able to just be kids and not be aware of childhood cancer and suffering at all. Do they or others like them deserve to face angry mobs to survive?!
As always, Jesus was right. The little children will lead us if we let them. They learn hate and mistrust from adults. It's not natural for them. They are pure of heart. They are accepting of differences and more tolerant than we are. They are always willing to help. This fall, let's all be like our brave children who just want to be well and go back to school. Ollie just wants to be with his friends and learn. He and so many others like him who have fought critical illnesses know too much about the world's agony and ugliness already. They survived it all and still want to rejoin the world with positivity and happiness.
If everyone does their part to keep each other safe, we can all get back to what we loved about our pre-pandemic lives. We can remember what makes life worth living.
Send me (and Mario and Abby) your strength and prayers to help our courageous boy re-enter life without further anxiety and fear. We've had enough. Be like my brave Ollie and find the joy even during times of uncertainty. Wishing everyone a safe back to school (if yours haven't gone back already) and fall.
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