Photo description: Ollie wears sunglasses and stands with his cane in front of the sign for the Cancer Survivor's Park in Ottawa.
In early May 2020 we came back to Ottawa from Toronto feeling deflated and stressed after missing the first opportunity to get him a lifesaving stem cell transplant when he relapsed a second time in his central nervous system. We spent 8 anxious weeks doing 13 sessions of brain and spine radiation, taking the new drug called Lorlatinib (that they obtained under compassionate grounds and was untested in children) and waiting to see if it worked. On June 24, 2020, we got the news that his scans were clear and he was officially back in remission!!! Last week he was officially one year in remission!!! So he did it again...proved that he could defy the odds and do 365 days of survival after we were told there were "few options left" to treat him after his second relapse. Sometimes I wonder if there's any challenge he hasn't overcome yet!
Remission in this week last year started a new series of anxious weeks getting ready, going back to Toronto and finally getting his stem cell transplant with his sister Abby's incredible stem cells on July 20, 2020.
Photo description: Ollie stands with his cane in front of the Cancer Survivor's art installation in Cancer Survivor's Park in Ottawa. He stands in front of a tunnel of frames as behind statues of patents holding the issues of a child between them after emerging from the cancer journey.
One year in remission sadly isn't enough to say he's cured. I'm not sure we will ever be able to say that as even science doesn't really know who will walk away and never have cancer again and who may get it again. But, it's clear he's a survivor and we're hopeful he'll remain so. He and I made a visit to the Cancer Survivor's Park in Ottawa near the Ottawa Regional Cancer Foundation and took some photos so he'd have his rightful place there. As I shared in an earlier blog, we drive by this park every time we go/ have gone to CHEO and The Ottawa Hospital and many times during treatment it reminded me that people survive the unbelievable torture and agony of cancer and end up survivors.
Not surprisingly his survival makes us want to help others to survive their darkest hours and help their children, too. So we were thrilled to share Ollie's story for the 2021 CHEO Telethon, which raised a record-setting $10.9 million dollars!!!
Photo description: A brown paper bag reads "Ollie +Abby" with CHEO stickers on it.
When Ollie went into CHEO for his regular monthly bloodwork and checkup the day after the Telethon, the staff treated him like a celebrity after seeing his story. He felt pretty proud to be part of it and this helps to boost his confidence.
He also had an opthamology consult at CHEO two weeks ago at my request. The last time he had one was just after getting back from transplant last September and recently he's complained of things seeming darker again, causing him more fear and reducing his confidence. Naturally that stresses me out more as I worry something is happening in his brain (the fear always immediately goes to a relapse) and he becomes more needy, making my day to day activities with him harder. I'd also noticed a free weeks before that the blue in his right eye appeared to be bleeding out of the circle and into the white of his eye. Thankfully our oncologist always takes me seriously, so when I asked for the consult, she and her team immediately arranged it.
Dr. O'Connor is the Opthamalogist at CHEO who has seen Ollie for the 17 months since he became blind. He told me this was the best look at Ollie's optic nerves that he's gotten since he went blind. He confirmed that in Ollie's right eye there is the extensive damage they've assumed based on the previous inflammation in that eye and on the scans. He was impressed by how much peripheral vision Ollie actually had in that eye considering that he could see that the optic nerve was almost chewed away at by the lymphoma. He said unbelievably there is still some minor inflammation and bruising in that eye (that's what the blue in his white was!), so it's still possible that he may recover a bit more light/vision in that eye. He told me noticing the bruising was a really good catch that most would never notice. I told him it's now my job to notice every little thing about my son.
He then told me he'd reviewed Ollie's case notes before seeing him. He asked me if anyone at Sick Kids had ever mentioned that Ollie's left retina was detached as he hadn't seen it in the case notes and he hadn't noted it himself last fall. I told him I was certain I would have remembered that! So he said, this would explain the sudden darkness for him and congratulated me in following my instincts to ask for a consult. He's referred us to a retina specialist as we'd like to reattach the retina to avoid pressure issues, for the chance that he may recover a bit if that vision and just in case science and medicine make it possible for his optic nerves to be repaired one day. As I told the doctor, 60 years ago a stem cell transplant wasn't possible, they're currently using stem cells in the US to regenerate damaged retinas and he's still very young so has a lifetime of medical progress ahead to hope for. Retina reattachment is a relatively quick and easy procedure done through laser eye surgery now. We'll keep you posted on this.
In other news, Mario and I are now double vaccinated and Abby has her first and is awaiting her eligibility for her second. The vaccine still isn't approved for kids under 12 and it will have to specifically be okay for immuno-compromised kids like Ollie before he can get it. We remain hopeful that news will come soon.
Another beautiful thing that happened to us recently was that my dear friend Vanessa Kelly arrived at my door with a gift of her latest book for me. Vanessa is a USA Today Best-selling Author of historical romances. I have long been a closeted fan of historical romances and when I met Vanessa at my church a few years ago, got to know her and found out what she did for a living, I immediately began devouring her books as my guilty pleasure. Since Ollie got sick she's so kindly brought me advanced copies of all of her new books! So I was excited at this one arriving just as school was out and I'd have a bit more time to read. When she left and I opened the package there was a card for Abby and I with the book that said she hoped we didn't mind that she'd dedicated her latest book to us!
Photo description: Cover of the novel, "The Highlander's Irish Bride" with a photo of a shirtless man in a red kilt embracing a woman in a pink dress. Novel by USA Today Best-selling Author Vanessa Kelly.
So I quickly opened the book to the dedication page and wept as I read her dedication and personal message (see photo below). I was also thrilled to be in the incredible company of our dear friend Maria who does have THE most loving heart around and has been the most generous friend before and throughout Ollie's cancer. She was the one who arranged the meal train and had everyone feed us for the months we were in Ottawa, arranged prayer circles, came to hospital and fed us there, played Beyblades in hospital with Ollie, fed me and sat with me in the pediatric ICU when Ollie first relapsed and Mario and Abby had strep and couldn't come to hospital, etc.
To say that Abby and I were touched by Vanessa's love and public admiration through this dedication is an understatement. Vanessa has also been a constant source of positivity and prayer during Ollie's cancer treatment and stem cell transplant and I am blessed by her friendship. I don't know how I got so lucky to have such fantastic people in my life, but I am grateful to God daily for all who have loved and continue to love us.
If any are interested, her new book will be available to buy on July 27th through Amazon and other book retailers. Warning though - they're addictive so make sure you start it in a weekend when you have lots of time to read! 😉
The kids finished off an inspiring year of martial arts with Kids Kicking Cancer with their Yellow Belt Grading Ceremony. Imagine that my blind cancer- and stem-cell transplant surviving son who was in a wheelchair and hardly able to walk to the bathroom last September earned his yellow belt this year! I am 100% convinced that Kids Kicking Cancer contributed so much to getting him to wellness, strength and a hugely improved range of movement over the past 8 months. It's also built his confidence as he gave several talks to senior federal government and corporate leaders on how to overcome challenges and use power breathing to calm your fears and anxiety during these difficult times.
Photo description: Abby and Ollie show off their new yellow belts from Kids Kicking Cancer.
At Kids Kicking Cancer they tell their powerful martial artists that their mission is to teach the world. He and Abby HAVE been teaching the world how to face adversity with bravery and determination these past two years. Abby agreed to do the martial arts classes simply to help Ollie, but she ended up getting so much more out of it than she expected and was pretty proud of her yellow belt (even if as she pointed out she was the oldest in the class). I couldn't be prouder of either of them or more grateful to Sensei Lyne and Sensei Cody as well as Jill, Julie and all who have worked so hard to bring the gift of martial arts to kids fighting cancer and their siblings in Canada.
Ollie and Abby ended online school last week. It was not an easy year between cancer/stem cell transplant recovery and the pandemic, but they hung in there and both made some astounding progress considering everything they had to deal with at the same time. One of Abby's teachers really got our situation this year as her son needed a kidney transplant, so she was part of a kidney transplant chain (she was not a match for her son, so donated for another child for whom she was a match and someone who was a match for her son and had a child for whom they were not a match donated to hers). Thankfully both her and her son are also doing well. What a year for everyone!
Ollie's vision itinerant teacher Mrs. Shepherd was retiring at end of this year and no doubt Ollie was one of the most challenging and yet impressive students she's ever had. She says he learned Braille faster than most students she's taught over her long career and I am one of only two parents she's ever known to learn Braille with their child. She was a gift to us with her expertise and determination to get Ollie into advanced (called grade 2/contracted) Braille and back on track for school next fall with his regular class (assuming it is safe enough for him). Ollie was genuinely sad to hear that she would be retiring and wouldn't be his teacher again next year, but we know he'll be in great hands with his next teacher given the great transition Mrs. Shepherd did.
In addition to his remission anniversary and end of the school year, it was also Ollie's 9th birthday last week. Since we knew it would be another fairly quiet one with only a small family party and we promised to have a real party for 9.5 or whenever it's safe to, Ollie got an extra special present in lieu of a party.
After much discussion about his desire to ride a bike again (and he meant alone, not tandem) and deliberation about the merits of a three wheel bike vs. tandem bike vs. other options, we finally agreed to buying him a pedal go kart. Since it's hard/more dangerous for blind/low vision people to ride a bike independently, he agreed this would be a great and exciting alternative. We take it out to the Central Experimental Farm near our house and he's had a complete blast on it, being so much more confident than we expected. We do have to give him a bit of verbal feedback if he's getting close to an obstruction or hill, etc., but otherwise it's all him and you can tell he feels free and like a completely normal kid when he rides it.
Photo description: An ad for the Great Make-A-Wish Campout that reads, "I've accepted Oliver's Campout challenge...Now I'm challenging you!" With photos of Ollie from his Wish Day and Abby camping last year for the event.
In honour of Ollie's birthday, and of our dear friend Hillary McKibbin's birthday, (which is the same day as Ollie's!) the two kids were Co-Wish Ambassadors for the Great Make-A-Wish Campout last weekend. Although it rained most of the weekend, we had some fun and raised some money to Wish It Forward for other kids with critical illnesses. Thanks to all for your generous donations for our many causes. We're taking a break from financial donations for a bit now...
...so now all we want is your BLOOD! 😄 In honour of Ollie's upcoming re-birthday (1 year anniversary of his stem cell transplant) and his sister's Hero Day (when he got her lifesaving stem cells) on July 20th, we're doing a blood donation clinic from July 19th to 24th. When Ollie was sick he got every blood product there is multiple times including blood, plasma, IViG and stem cells and each one saved his life every time. In gratitude we want to help to save more loved ones like Ollie with blood donations.
We're hoping to get 100 donations. You can join our campaign from anywhere in the country and new donors are welcome. It's safe even during pandemic. I have donated every 84 days as I am allowed since Ollie got home from transplant last September. It takes less than an hour and you could meet a friend there to chat and catch up during your collection as I have!
To join our campaign, simply:
1. Register or sign in if you're already a donor and have an account.
2. Select "Partners" from the menu.
3. Search "Donate for Ollie & Abby".
4. Book an appointment to donate between July 19th to 24th.
If you prefer you can also call 1-888-2- DONATE and ask to be added to the "Donate to Ollie & Abby" campaign that week.
If you can't donate, please share this with others who might. If your loved one is ever critically ill or in an accident, you want to know that blood will be there to save their life. I have sent silent prayers of thanks to the kind donor each and every time my son has been saved by a blood product. What an incredible country we live in that you can count on free lifesaving blood!
After this campaign we're going to take a little break from giving back to recharge. I sometimes forget that we went right from cancer to stem cell transplant to school and "regular life" so rapidly last fall with no time to process or rest. We plan to do that and only that for August to ready for the next transition back to in-person school in the fall if it's safe enough for Ollie.
Wishing you all a beautiful beginning to summer. Don't forget to find the joy in life every day no matter what your challenges may be. It's there if you look for it and helps you to survive even the worst things you can imagine.
Ollie looks so great--so strong and vital! He and Abby are just da bomb, I tell ya. Two great kids, and Mom and Dad are pretty awesome, too! Thank you for your very kind shout-out for my book, and it was a true honor to dedicate it to you, Abby, and Maria. I bless the day I met you truly splendid ladies at the Strawberry Social. You are both a gift to everyone who knows you! xoxo
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