Stability is often underrated. Most of us crave the excitement of newness in our lives even if we don't always like the pace of change (whether too slow or too fast). Throughout the roller coaster of cancer during COVID-19, though, we've learned too well that stability is the greatest place to live. I know everyone is tired of the monotony of staying home for stability right now, but to us stability was a distant dream a year ago, and today is a blessed reality. Perspective is everything.
[Photo description: A smiling Ollie looks into the fire table as Mario shakes Jiffy Pop popcorn over the fire after dark]
[Photo description: A smiling Ollie sits on the red sofa in his play room while holding a street sign that reads, "Skateboarding Drive"]
[Photo description: Ollie relaxes on the sofa with his feet on the ottoman with his hands on Hope the dog on one side and Chewbacca the cat on the other]
[Photo description: Ollie fell asleep in the car with his head resting on Hope who is also sleeping]
[Photo description: Ollie and Hope sit in the playroom in front of the tablet waiting for the CNIB Guide Dog Program Graduation to begin]
[Photo description: Front page of the Ottawa Citizen print edition of Thursday, April 29, 2021 featuring Ollie and Hope and the headline, "HOPE IS WITH OLLIE"]
[Photo description: Hope sits beside Ollie while wearing a CNIB Pup Crawl Bib with "Ollie and Hope : 8306535" written on it]
[Photo description: Screen capture of web page for Team Ollie's Hope showing a photo of Hope and Ollie and $1,518 raised with a $1,000 goal.]
[Photo description: On Facebook Dawn shares CHEO's promotion of Ollie's CHEO telethon piece including a video with a thumbnail photo of Ollie and Abby watching a tablet together]
[Photo description: Screen capture of Ollie's CHEO telethon web page]
[Photo description: Abby laughing in front of her house while discovering signage that reads, "Happy 13th B-day Abby!" and balloons]
[Photo description: Abby smiling in the car after getting her braces on]
[Photo description: Mario and Ollie run through a blow up splash pad sprinkler in the backyard during the recent heat wave]
[Photo description: Dawn, Ollie and Mario enjoy a picnic at the Central Experimental Farm]
Medically Ollie is still in remission (340 days today since they declared remission last June and +314 days post transplant), but we'll never be sure if that's because of the stem cell transplant or his continued use of the ALK inhibitor drug Lorlatinib or both. At the moment he remains on the drug and the plan is to keep him on it for another year until he's two years post transplant in July 2022. There are two other children on it that we're following closely (in the UK and in the US) as they are each like us - essentially guessing when to take their children off of the drug to see if after the drug and transplant they will remain cancer free. Because the drug has never been tested on children, there is no data to rely on and because it has just been approved in the US as a front line treatment for lung cancer, but not ALCL, there's no adult data that is helpful either.
The one side effect that they all have is significant weight gain. In the big scheme of things for us this is okay for now because he is alive and otherwise doing well. When he was at his sickest he didn't eat anything (except being connected to IV fluids with sugar and potassium) for 17 days and was skin and bones. After that fear I'll take plump and otherwise happy and healthy any day. At some point, though, they'll all have to stop taking the drug and hope and pray that it and transplant were enough to "cure" them. Kind of glad we're not there yet. I never imagined I'd want to keep my kid on an untested drug for this long. Your whole mindset shifts when you're dealing with potentially life or death decisions.
The hypothyroidism that Ollie was experiencing a few months ago seems to have been corrected with the Eltroxin drug that they put him on. He has bone density scans and a meeting with the endocrinologist in July, so we'll see how long they expect him to remain on this drug. At least he's gotten past most of the fatigue, outbursts, and increased weight gain with low appetite, so we're on the right track.
We've spent a lot of time over the past two months contributing to other awareness and fundraising efforts to help others like we've been helped. With your help over the past year, between the Ollie's Pizza from Gabriel Pizza benefiting Candlelighters Ottawa, and fundraisers we've done or contributed to for CHEO, CNIB, and Make A Wish of Eastern Ontario, we've raised more than $17,000 to help families with medical challenges like ours! I'm blown away by this and we still have more to do...
At the end of April 2021, Ollie and Hope graduated in the CNIB's Guide Dog Program Graduation Ceremony alongside all Guide Dog and Buddy Dog pairs from across the country. It was lovely and he was so proud to be part of it! Ollie did an interview with the Ottawa Citizen about his Hope the day before and to our great surprise it ended up on the cover of the Ottawa Citizen on April 29 and page 2 of the Ottawa Sun! Everyone at CHEO teased him about how famous he and Hope are now! 😆
A few weeks ago Ollie and Abby's story was featured on the Global News' The New Reality show about COVID-19 and cancer. Ours was thankfully a positive piece despite COVID causing us to have to use Abby's half match stem cells last summer instead of the three perfect matches on the international stem cell registry. Unfortunately, so many adults with cancer have not been getting the treatments they need during COVID-19. It's important that people continue to seek medical attention for anything serious despite COVID-19. We can tell you from experience that the hospitals are being diligent about safety. We have literally lived in two hospitals and when outpatient visited two hospitals daily throughout COVID without exposure. And that is with a kid with NO immune system for a big part of this period.
CHEO tells us that while they normally see about 75 kids diagnosed with cancer annually, their numbers are way up at over 100 kids diagnosed in the past year. They don't have data to explain why, but I think it's likely because most of us are spending way more time with our kids during the pandemic and perhaps we're now more aware of their health or lack thereof than ever before. This at least is a positive by product of COVID as it potentially means kids being diagnosed earlier with a greater chance at beating cancer.
Ollie and Hope also participated in the CNIB Pup Crawl to raise money to help others like him to get a Guide Dog or Buddy Dog. Our original goal was $500, as we know that we've asked a lot of people for fundraising help over the past months. Within 12 hours we had already met and exceeded that goal so we increased it. In the end we passed that goal, too and were shocked and grateful when so many generous people donated helping to raise $1,518!
So now we're raising money for CHEO through the sharing of Ollie's story on the CHEO Telethon from May 24- June 6, 2021. I love how they've also highlighted the very special role that Abby played in his story. We're honoured to be representing all oncology families this year and to be profiled with 5 other families with various medical needs served daily by the incredible team at CHEO.
I have always made donations to others' CHEO fundraising campaigns in the past. I can vividly remember hearing the telethon broadcast on the radio when Mario and I were newly dating 16 years ago and having to turn it off because the stories made my heart hurt and my eyes leak and I wanted to give them ALL of my money (not that I had much then either). I recall being horrified at all that those courageous families had to endure with their poor innocent children. And now it's our family who's endured it and survived it.
Honestly Ollie is here today because of the tireless efforts of everyone at CHEO. We are so fortunate that we had such excellent care right in our own city and we'll continue to need them throughout Ollie's childhood as he's monitored regularly to ensure there are no further relapses and to treat the long-term effects of his cancer like his blindness (we're seeing opthamalogy again next week), his bone density issues (he has scans and an appointment in endocrinology in July) and anything else that might come up over the next 9 years of his childhood. Although he is doing well, cancer treatment doesn't really end with remission and kids like Ollie will continue to need the resources at CHEO. And with all of the generosity that there is in this city, we still need more to meet all of the needs of the kids that CHEO serves annually.
To this end, we are also thankful to W.O. Stinson and Son Ltd. who are matching donations up to $10,000! Please give generously if you can and share with anyone who has followed Ollie's journey over the past 19 months. The telethon will also be broadcast on CTV Ottawa from 1-7 pm on Sunday, June 6th and we'll be doing a live follow-up interview following the broadcast of Ollie's story (likely between 6 pm and 7 pm). We've heard from a few of you that you've already seen the promo video or part of Ollie's story on CTV Ottawa news over the past week and made a donation, so thanks to all!
Abby's also had an eventful few weeks, having had a birthday where she officially became a teenager, getting her braces on and having her first and very coveted COVID-19 vaccine scheduled for early June.
Mario and I are both doing well. As you read above, I've been pretty busy managing Ollie's philanthropic and awareness raising activities as well as his schooling and regular medical scheduling. Mario has also been busy with work and in evenings and weekends being Ollie's "playmate" and always working away trying to squeeze in activities from our perpetual to do list around the house.
Often we just accept that some things won't get done as we take the time to enjoy the second chance we've been given at continuing Ollie's childhood. Because in the end nothing else matters like living does.
Hoping you and your loved ones are safe and okay and taking deep breaths to get through this home stretch. I recently learned that a childhood/high school friend Melissa got COVID and was in the hospital on a vent for a while. She's doing better, but she's the same age as I am and it sure hits home that this is serious and can affect any of us. Praying that her recovery continues and sending strength to her family. The lockdown has felt difficult for all, but there are worse things to survive and this is exactly why we've had to endure lockdown. Everyone has had to sacrifice. Trust me - you can overcome things that are way harder than you can ever imagine surviving. As things open up wherever you are, please be safe and moderate in rejoining the world. Sending you all strength for whatever comes next.
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