Photo description: Abby and Ollie stand under a marquee sign pointing up at the Gladstone Theatre that reads, "Happy 1st Birthday Post Stem Cell Transplant Ollie! Happy Hero Day Abby!"
On July 20, 2021, we celebrated Ollie's re-birthday/ one year anniversary of stem cell transplant and Abby's Hero Day (part 2 as we celebrated the one year anniversary of her actual stem cell donation back in March as part 1 given the relapse that Ollie had in between her donation and actually getting the transplant in 2020).
It was a long anticipated day by Ollie and I and one that Mario and Abby preferred to mark more quietly. It seems as we go forward, Mario and Abby want to get back to "normal" (whatever that is - especially in the era of COVID-19), while Ollie and I are so irrevocably altered by it all that we can no longer just go back to who we were before. Perhaps this is because it's Ollie and I who were the every day participants in cancer treatment and stem cell transplant and neither of us got to live in our regular daily life over the past two years. Whereas Mario and Abby still went to work and school (albeit online since March 2020) and carried on with their usual day to day activities most days. Obviously both have been affected by everything, but given Abby is very much like her daddy in some ways, both appear to be stoic, yet have big emotions brewing just beneath the surface.
Abby did let me rent the marquee at the Gladstone Theatre (a great way to mark the special occasion and to help out a local theatre company that has struggled like most during COVID) and agreed to pose for a photo with Ollie to help us promote our blood donation clinic that week, but felt that was enough for her.
Earlier that week Ollie had his last monthly check up and bloodwork at the CHEO Medical Day Unit (MDU) post transplant clinic. The doctor confirmed that all is well, he could stop taking the anti-viral he's been on for a year and is cleared to go back to school if COVID numbers stay low. He still cannot have the vaccines for chicken pox or measles, mumps and rubella (MMR) because they are live vaccines and he cannot have live vaccines while he remains on the Lorlatinib ALK-Inhibitor drug. So he has a medical exemption for those until he finishes his drug and if he should be exposed to any of these, there is a treatment plan if we act fast enough. Honestly it's all stressful, but many cancer kids faced same pre-COVID. And he desperately wants to go back to school and be normal.
I asked about the protocol for fever going forward and we're now done having to immediately go to hospital for fever! So normal parenting of a kid with run of the mill day to day illness now. It's mind blowing that one day we need to go to ER for any fever or sign of even a cold and and the next we don't. Of course there's also COVID to worry about and there is heightened risk for stem cell transplant recipients, so I was clearly still uncertain. Dr. Abbott reminded me that the team is still there for us and if we have any concerns we can call or email anytime. From this point forward he'll have checkups and bloodwork every 3 months, but does have certain other appointments in between.
As a celebration Ollie asked me if we could do something like go to Toys R Us. I think he meant for curbside pickup, but given it was a Monday afternoon and not likely to be busy, I took him inside to pick his own special prizes for this milestone. This was his first time in a retail store in 20 months and he was almost vibrating with the thrill of it. Funny because pre-cancer he hated shopping with me. He touched nothing before I wiped it down and we stayed far away from the free other shoppers just in case, but it was enough normal for him.
Ollie didn't want to do anything different during the day, but had hoped to have some family friends over for cake on the deck. Unfortunately rainy weather put a damper on those plans, so we celebrated with just us four the night of the anniversary with Ollie's Pizzas from Gabriel Pizza and cupcakes and later in the week had cake with some friends, too. Naturally he got the latest Beyblades Stadium set as a re-birthday present!
The actual day itself was quite emotional for me. It's taken me these last few weeks to unpack all that I have been feeling recently, hence the delay in writing this piece which I started, but needed to leave because I didn't know what to write to explain it. The fear and the relief that I felt on that day last year was not altogether different than what I felt on the same day this year. More relief and less fear this year, but always the underlying worry of what might be next for our incredible boy to face.
I did a pre-recorded interview with Alan Neal from CBC Radio's All in a Day and Jan Grant from Canadian Blood Services (who has been amazingly supportive of our donor clinic and with whom I have a lot in common). Even doing the interview was more emotional for me than usual. As it happens we'd booked the donor clinic months ago, but suddenly the need for blood and blood products has risen dramatically as non-emergency surgeries and such have been re-started post lockdowns. So it was timely to be doing this and I found myself remembering being in the phone with the transplant doctors in March 2020 as COVID began and them telling me they weren't sure that there would even be enough blood available if Ollie needed it. To which I replied that he was the same blood type as I was and they could just hook me up and give every drop of my blood to my son to save him. The things you remember sometimes are unbelievable.
I had booked to donate blood that day at 5 pm with a friend, which is why I had to pre-record the interview. The interview aired as I was driving to make my donation and so many people in the clinic told me they heard it on the way over, too and it made them feel great to be donating at that time for people like Ollie. As it turned out a handful of my friends who had joined our team were there at the same time donating. I was super touched by their generosity and so thrilled to see Marie- France, Connie, Jenn and Jamie there!
Photo description: Ollie wears a Canadian Blood Services hat and sunglasses while holding a Canadian Blood Services/Hockey Gives Blood mini hockey stick and puck on his one year anniversary of his stem cell transplant.
The staff at Canadian Blood Services were wonderful and sent me home with a big bag of treats and Canadian Blood Services merchandise for Ollie and Abby.
Since then I've had messages from a bunch of folks saying they donated in Ollie and Abby's honour recently and a few of them were even first time donors! My friend Jenn made her first allowable donation 5 years post breast cancer for Ollie! These were all high points of the emotional roller coaster over the past few weeks. I have the best people in my life!
My emotions were also yo-yo-ing a lot over the past few weeks as I attended the online funeral of an old friend's husband two days before our rampant anniversary. My dear friend had been one of the first to reach out to me when we shared the news that Ollie had been diagnosed. I've known her since high school and she, her husband and myself were all in Ottawa for university. Her husband was battling cancer and had been for a few years by the time Ollie started his journey. She had a lot of advice to survive it all and throughout the past two years we've been in touch to update each other on significant developments. She'd told me at the beginning of the month that he was palliative. They have two children close in age to Abby. That triggered my sorrow.
It's not that I'm close to her husband - I actually haven't seen him since university. It's how cancer robs a family. How every member suffers and is deprived of their joy for so long. How those kids had to watch their dad deteriorate and lose him. How my dear friend lost her partner (first emotionally/mentally due to the stress of it all and then physically, too) and spent almost 5 years of her life trying to save her family.
Photo description: Ollie smiles and gives a thumbs up white sitting at the table. A vanilla cupcake with sprinkles and a lit candle sits in front of him to celebrate his transplant anniversary.
Then the week after Ollie's anniversary, I heard from a friend who used to take care of my grandma when she lived at a retirement home. She told me she was looking at photos of that time and found some of Grandma that she thought I'd like. Through the course of our chat, it came out that she was going through the old photos for the mother of her former colleague and our mutual friend who had passed away suddenly of cancer in February.
This woman was among the kindest people I knew. We became good friends over the years since she took care of my Grandma. She was at my Grandma's funeral and hugged me so tight and told me so many beautiful stories about her and how much she loved her. When she found out that Ollie was sick she sent me beautiful messages of encouragement and told me she knew my Grandma was in heaven lobbying God to let me keep my boy and how proud she'd be of me for the mother I was through such difficulty. She sent a superhero package with gifts to my kids last year just before transplant.
I hadn't heard from her since late fall, but hadn't thought anything about it because many people who had been following us online grew quieter as things became more stable for us over the past year. I was honestly gutted to hear that she'd been diagnosed on Christmas Eve with ovarian cancer and passed away 7 weeks later. Few people knew she was ill. When I heard the news all these months later I was devastated. I was sorrowful and angry while begging God to help me to understand why innocent and kind people must suffer this way. Why do families have to go through this?!
Photo description: Ollie sits at the table with Mario after blowing out candles on his cake to celebrate his one year anniversary of transplant.
I'm doing better now, but I wasn't alright for a couple of weeks. My therapist says that anger is a normal part of the healing process after the trauma of cancer and my usual positivity and proactive nature will keep coming back, but it's important to feel these big feelings.
Anger is my least favourite emotion and makes me feel out of control. I hate that feeling and yet a good part of the last two years I have felt that way...tightly wound with my sanity ready to snap at any point without warning. I've talked a lot recently to other cancer moms and know this is all "normal" for us, but still hard for each and every one of us nearly every day.
Photo description: Ollie sits at the table in front of a Braille version of the game Scrabble and feels a Braille Scrabble tile for the first time.
There have been good days and high points interspersed among my bad days. The interview I did for Healthing.ca finally got posted. This was timely as it promotes donation of all blood products and these are desperately needed right now as surgeries and procedures resume after lockdowns.
We also saw the endocrinologist and Ollie's bone density and hypothyroidism issues are improving (slowly). We have scans again in about 6 months. In the meantime he stays on the hypothyroidism med, doesn't need the osteoporosis injections and cannot use trampolines or go horseback riding.
Photo description: Dawn, Ollie and Mario sit in a darkened movie theatre wearing masks while Ollie holds a huge bag of popcorn.
Another highlight was taking Ollie to the movies. Ollie was having cabin fever and begged me to see if we could safely go to the movies. We haven't been in two years since just before he got sick.
I checked out COVID protocols and was happy to see I could book seats and everything around them would be blocked off automatically. Also figured Sunday night for a kids movie (the new Boss Baby sequel movie) wasn't likely to be a big draw.
I discovered that most new movies now have audio description (marked as DS or Descriptive Service in movie ads) thanks to a lawsuit in the US where blind people sued the studios forcing them all to start providing audio description that narrates the details and context a blind person needs to understand what's happening on screen. Not only do studios have to provide audio description tracks, but theatres over the past six years have been equipped to have blind patrons use a special headphone and transmitter to provide the audio description in every theatre for free.
Photo description: Dawn holds a small black transmitter and headphones in her hand that read, "Fidelio". This enables bind and low vision people to use the descriptive audio service in movie theatres.
We went to the 7 pm movie with Ollie. There were three families sitting rows apart in the entire theatre. We bought a gigantic popcorn (we did once order movie popcorn to our condo in Toronto as a treat during transplant there!). We kicked back in the recliner seats. The movie started. The boys were enraptured.
I sat in the dark and silently cried for the first 5 minutes at the blissful normalcy (despite masks) of it and with the joy of knowing that there is a technology that will allow my blind son some enjoyment of a normal activity.
My heart was full and I enjoyed that silly overpriced movie more than any other I've ever watched. Grateful. Thank you science and innovation.
Photo description: Ollie stands in the grass at the dog park while commanding Buddy Dogs Hope (foreground) and June (background).
One afternoon we had a great meet-up with fellow CNIB Buddy Dog duo Connor and June at the Country Canines Playpark.The boys enjoyed the hour in a private dog run to keep them safe from COVID and to enable their dogs to run freely and have fun safely. I am always impressed by the CNIB Buddy Dog program and the fact that although these dogs didn't make it into the guide dog program, they are so well-behaved and responsive to commands even given by kids!
Ollie was in his school's playground about a week ago getting re-familiarized with everything now that he's blind and hasn't been there in almost two years due to cancer, stem cell transplant and COVID-19.
He walked every inch of the yard with his white cane to remember every tree, bench, basketball poll, soccer goalpost, door to the school and playground. At times it was frustrating for him to be back in a place he once felt so comfortable in and now needs to re-learn.
Lots of patience from his vision loss consultant and many mama hugs later he got it done and even took a swing on the monkey bars. He was delighted to see he'd grown so much in two years that he could even reach up and grab them from ground level!
So ultimately despite the sadness and anger, most of our days were filled with happiness and excitement. My cup really is always at least half full.
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