Ollie was so excited about going back that he woke up at 5:30 am the first day! As I snuggled in his bed with him hoping he'd go back to sleep for at least an hour, he talked to me softly. "Mom?", he said sweetly. "You don't have to worry about me today or be sad that I'm going. I'm so happy that it can't be anything but a great day!" My brave boy reassuring me because he knew how hard that day was going to be for me. Don't get me wrong - I was overjoyed that he was well enough to go back to school, but as with every milestone that we hit on the path to total wellness, it was overwhelming and reminded me of how much we've had to overcome to get to this moment that at times we were uncertain would ever be possible.
I took him and he was vibrating with excitement. No nervousness or fear at all. As we waited for his educational assistant to meet us we saw many friends who joyfully greeted us, most knowing how momentous this day was for us. They had followed our journey and nurtured us through it with frequent food and gift drop-offs, kind messages of support, financial donations and so many prayers sent our way. I held it together until Ollie and Mrs. Taylor disappeared into the school, then turned around and tears began pouring down my cheeks almost blinding me as I stumbled back down the path to my car.
Through my tears I saw my friend Angie who is the office manager at school and goes to church with us. We've worked on fundraisers together and over the past two years she's had her own personal challenges, but she was always so supportive of us, even personally delivering things to the house for Ollie from school. She walked towards me with her arms wide open and enveloped me in the best hug as I sobbed. We were both wearing masks and we both felt that this was far more needed in the moment than the COVID caution we usually observe. It was the best hug and I was grateful for the empathy and compassion in it as I let go of so much pent up fear and uncertainty.
I don't even care that everyone watched as I had my break down. I deserve that after everything we've been through and endured. They all understood that and stood nearby in support. Many came up to me after to offer words of support and love. How blessed we are to have such an incredible village around us helping us to raise our child! He's doing great and has settled in nicely with few bumps along the way.
On the first day of school he had a moment of feeling left out as friends went ahead and played like they normally would inadvertently leaving him behind. Fortunately his kind E.A. helped him to problem solve and they went to find someone he could play with. We reminded Ollie that he'd been sick a long time and was now blind and the kids didn't know yet what he COULD do, so he'd need to educate and show them! Since then they play road hockey with his audible hockey ball, basketball with his jingling basketball and soccer with his beeping soccer ball. I've bought every adapted piece of sports equipment there is and they're worth every penny! His friends have been amazing at learning how to accommodate him by calling out who they're passing to so he gets audio cues to follow the ball, too. His teachers tell me how much they're all learning from him about accommodation and inclusivity and how well that will serve them all as they grow up.
During rainy day recesses his friends take turns playing chess with Ollie on his tactile chess set and he delights in teaching them the new moves he's learning. He has a weekly chess lesson from a local young man who quickly rose to the challenge of teaching a blind kid and has gotten excited researching ways to make it easier for Ollie to learn and play.
Abby didn't start school until two days later and found the transition in the first days a bit overwhelming after 18 months of not having in person daily interactions with those outside of our family. She, too, has gotten more comfortable and happier as time has passed.
Sending them both back was the right decision despite the risks. We are grateful to both schools and all staff who have helped to make our re-entry a positive one. So far both have been safe, although Ollie did get his first cold post transplant after the first two weeks of school. We kept him home and watched him closely for COVID symptoms. He only had a sore throat and runny nose, so fortunately not COVID symptoms without accompanying fever and cough. I also kind of obsessively checked that he could taste and smell regularly and went in when he was sleeping to check that he had no fever or laboured breathing. We knew that there had been a few cases of colds in his class and that those kids had negative COVID tests, so I just kept breathing deep and reminding myself that if nothing else we've learned to triage symptoms through cancer and not jump to the worst conclusions every time. When the worst you can imagine has already happened to you, you tend to have heightened awareness of when things are normal and when they're not.
So we booked the first COVID test we could for a few days later just in case, but the day before his test he was bouncing back and feeling better just 4 days in. By day 5 he was back in school and I was thanking God and Abby once again for his new immune system that has now been tested and proven to work well. Naturally from the stress, I got his cold within a few days, too. It's the first illness I've had in the 2 years since his diagnosis. My therapist says that's a good sign that I've let my body relax to the point where I allow myself to get sick. That it means that at least subconsciously my body and brain know that he's no longer in the same danger and that even if I get sick it'll be okay now. I guess I have taken the armour off or at least part of it.
I have been trying to strike a balance between spending time on processing my feelings about everything and getting things important to me done these past few weeks. Each day I spend some time walking Hope, thinking and praying, organizing medical appointments for myself and Ollie and trying to knock a few things off of my lengthy to-do list. After two years, there are so many things we've not had the energy to do around the house and I hope to take care of some of them before I go back to work.
Ollie has CT and MRI scans coming up tomorrow and blood tests in mid-October. These are pre-occupying my mind at present and causing my sleep to be erratic over the past few days. He shows no symptoms, but it's been too long since his last scans and scanxiety is real and hard when you're battling PTSD. This is part of the new "plan" for Ollie that his oncologist and I have puzzled out together because there is no roadmap for relapsed Anaplastic Large Cell Lymphoma. But we are trying to remedy that, too.
To that end I was asked by Ollie's Toronto oncologist to participate in a meeting last week with a Stanford University researcher and an American oncologist who is an expert in ALCL and head of the Children's Oncology Group (COG) ALCL Committee. We discussed outreach to ALCL parents to encourage them to participate in an ALCL relapse study. It's early days and will be a longer term project, but I am proud to have been consulted and cannot help but feel that it is a good step towards collecting information that could help to standardize relapse treatments in future. I am grateful to my ALCL parent friends around the world who are also raising awareness so that together we may make a difference for other ALCL families and spare them some of the fear of not knowing how to treat this in future. This makes me feel like all of the agony that we have endured may at least result in better outcomes for kids like Ollie in future. I am grateful to play a small part in positive change.
Ollie had a consult with the retina specialist at The Ottawa Hospital a couple of weeks ago. Turns out the retina specialist is married to Ollie's incredibly kind and brilliant radiologist so he already knew all about Ollie and our story. After examining Ollie he told us that he can see that blood has pooled behind each of his eyes. On the left side likely because of the retina detachment and on the right likely due to a small tear. He still has slight peripheral vision in that eye, although the blood is making it more difficult to see anything. The blood will need to be removed through a surgery. In addition there are new abnormal blood vessels growing (Neovascularization) that need to be stopped through a laser surgery.
He felt that even if we'd caught the retina detachment earlier he'd still have a very low chance of recovering any vision in his left eye given the extensive damage and with the passage of time due to COVID backlogs, there is no chance of re-attaching and seeing anything now. The pressure in his left eye is twice as high as it should be, so we need to reduce that and have been given eye drops that he takes twice a day for this.
Essentially we need to keep his eyes healthy so that he can keep them both. That's the real goal now and if we can clean up/repair the right eye to keep any peripheral vision/light that he has, that's our hope. He also intends to consult with his glaucoma specialist colleague as he feels we may want to consider using some of their techniques to help Ollie. The next step is that he has an ultrasound on his eyes in October 15th followed by a follow-up with the retina specialist. At this point they'll have a clearer picture and actual recommendations to move forward.
To be honest I was disappointed that it wasn't better news. Although I have accepted Ollie's blindness and didn't honestly expect any significant improvements in his vision, I had hoped re-attachment was the way we'd go to preserve the eyes. Ollie had a different viewpoint about the appointment, though. He said it was a good appointment and when I asked why he said, "They didn't say there was nothing they could do, Mom. Doing something and keeping my eyes is way better than them saying there's nothing they could do!" As always my brave, wise beyond his years boy surprises me with his hope and positivity. And if he can be okay with it, so can I.
On the philanthropic front, Ollie participated in his school's annual Terry Fox Run/Walk recently. He told us he was walking for all of the friends that he had at CHEO who were still battling cancer. Most of his school friends and a few at other schools were walking for Ollie. I got the most heartwarming photos from parents we know of their kids wearing their Walk stickers which say, "I'm running/walking for:" and where they'd written "Ollie". So thanks to the incredible Terry Fox, my boy is continuing his legacy by inspiring others to keep raising money for cancer research. Giving and kindness are cycles we are so glad to be part of.
I was also pleased to do a testimonial for the Department of Immigration, Refugees and Citizenship Canada last week for the Government of Canada Charitable Workplace Campaign (GCWCC). My friend Allison, with whom I used to work at Treasury Board asked me if I might speak at their event and highlight some of the many charitable organizations that have helped us. I was glad to have the opportunity to encourage others to give to so many worthy organizations and to do my part to remind public servants why we give - because it was our family this time, but could happen to anyone. You never expect to need the support of your community in this way, but are so grateful to have it when you need it. My testimonial seems to have been well received, although the Deputy Minister and Assistant Deputy Minister noted how emotional they found it and I can understand that as I am totally honest and open about it. By the end of doing these I typically feel like I have an emotional hangover. Why do it then, you might ask? Because someone needs to and because it is part of my healing process to get it all out and to try to create a legacy of good coming out of it all. And I'm tired of the stigma that we must hide away our feelings of sadness and anxiety. Why is it okay for so many to display anger openly these days over their disagreement with COVID restrictions and mandates, but still not okay for the rest of us to share genuine human emotion that may actually evoke the empathy that we so desperately need in the world right now?! And I always try to share my honest feelings including the incredible gratitude and wonder that we've felt over our son's survival and the kindness we have been shown constantly. I'll keep doing it as long as I keep getting asked and feel it may make a positive difference in the world.
We were thrilled to hear that Pfizer had submitted data to Health Canada this week as a precursor to their request for authorization of the COVID-19 vaccine for children ages 5-11. Ollie asks me daily if there's any news. He's waiting impatiently to get his vaccines as he knows it will be a game changer for us and finally allow us to live as normal a life as possible without the constant fear that he will get COVID and be seriously ill or worse. He desperately wants to be able to have regular playdates and attend birthday parties like a normal kid. To go out in public without us trying to keep him away from other people. To be able to hug people (still with masks on for a while no doubt) without fear. I want that for all of us, too. We're hopeful that before Christmas he'll have at least two doses and that maybe we can even see family and our closest friends then. We owe them all the biggest hugs after doing so much to help us save Ollie these past two years.
So wish us luck and send us your prayers for clear scans this week and good blood tests later this month. We'll update you when we can. In the meantime, have a happy Thanksgiving, but please be safe if you are seeing family and keep your gatherings smaller than normal to reduce the risk of COVID numbers increasing drastically after the holiday.
