Stability and Philanthropy

[Photo description: Hope, Ollie and Mario walk along a gravel road during a beautiful sunset at the Central Experimental Farm]

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]

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. 

[Photo description: A smiling Ollie sits on the red sofa in his play room while holding a street sign that reads, "Skateboarding Drive"]

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.

[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]

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.

[Photo description: Ollie fell asleep in the car with his head resting on Hope who is also sleeping]

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...

[Photo description: Ollie and Hope sit in the playroom in front of the tablet waiting for the CNIB Guide Dog Program Graduation to begin]

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! 😆

[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"]

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.

[Photo description: Hope sits beside Ollie while wearing a CNIB Pup Crawl Bib with "Ollie and Hope : 8306535" written on it]

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!

[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.]

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.

[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]

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.

[Photo description: Screen capture of Ollie's CHEO telethon web page]

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!

[Photo description: Abby laughing in front of her house while discovering signage that reads, "Happy 13th B-day Abby!" and balloons]

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. 

[Photo description: Abby smiling in the car after getting her braces on]

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. 

[Photo description: Mario and Ollie run through a blow up splash pad sprinkler in the backyard during the recent heat wave]

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.

[Photo description: Dawn, Ollie and Mario enjoy a picnic at the Central Experimental Farm]

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.

Appreciation, Vaccination and Integration

[Photo description: Ollie and Hope asleep in his bed while he hugs her.]

Throughout Ollie's cancer treatment, stem cell transplant and recovery period we have been loved and supported by so many. I've said this many times over the past year and a half and I never stop being overwhelmed by how many kindness have been sent our way. By the selfless acts and the humility with which people simply tried to do the right thing to help our family in whatever way they could when we were in need and to help us to keep Ollie as safe as possible throughout this period.

[Photo description: CHEO's signage last fall notifying visitors that it was flu season and of measures they'd put in place to keep patients safe.]

People took special care to prepare meals safely and only when they and their own families were well. I received several messages over his treatment from friends who were signed up to send meals that said someone in their family had a cold (pre-COVID) and they didn't want to risk passing it on to us so they either sent us an e-gift card to buy a meal for our family instead or brought it by later when they were all well again. 

[Photo description: A foil wrapped dish of Chicken Broccoli and Rice Casserole from one of Ollie's former kindergarten teachers with the message, "You've got this Ollie. Love Ms. Charron" with heating instructions.]

Some families who were helping us with nurturing and chauffeuring Abby checked in when they had illness at home to warn us that we'd have to reschedule or even went the extra mile and called another of our friends who were well to arrange to take Abby when they couldn't. The school would call us when there was an outbreak of anything they thought we should be aware of in case we wanted to keep Abby home for a few days to avoid potential exposure.

There were many gifts dropped off lovingly and carefully with notes or messages texted to us explaining how they had taken extra precautions to sanitize them for us before dropping off. Respectful drop offs happened regularly where they gave us space for safety even before COVID struck and we all needed to. I remember being in church in fall of 2019 and a mama I knew who had heard our diagnosis news came to me and hugged me apologetically. She said she knew she really shouldn't be putting me at risk by hugging me, but told me she knew this was likely the last hug we'd be able to have as treatment got under way because she was a cancer survivor (I hadn't known!) and knew what we'd need to do to keep him safe, too. 

[Photo description: Ollie in his hospital bed at CHEO just after COVID-19 began in Ottawa in March 2020. Dearest friends (family to us) Uncle Vic and Mackenzie play Beyblades with him while wearing masks to protect him (and this is long before masks were recommended).]

So many of our closest friends and family got flu shots over the past two flu seasons for OLLIE. Because they knew we might need their help and they couldn't risk passing a flu on to us when Ollie had low neutrophils from chemo and post transplant. Many of them wouldn't normally get a flu shot, but got it for us. They told us they knew they needed to be ready to help us and couldn't be anywhere near us if they got sick.

These are the most beautiful gestures of people caring for each other. Of people selflessly putting the needs of an immuno-compromised child before their own. Of realizing that they had the power to make things a little easier and a little less scary for us as we fought to save our child's life and began to fear all of the invisible bacteria and viruses that could potentially kill someone with a low functioning or non-existent immune system. These generous souls researched and educated themselves on how to help us. And it wasn't just people we knew. Many were friends of friends and some even perfect strangers in our neighborhood and our city who heard our story and were moved to help in some way.

[Photo description: Friend Alexa's Instagram post sharing that she had donated blood in BC in Ollie's honour.]

So many friends and family from afar have donated blood and tagged us in posts saying they were doing it for Ollie. Several incredible humanitarian friends got swabbed and are now on the international stem cell registry because they were moved by Ollie and Abby to try to help other families like ours who need matches to save their own children. And many many more have sent financial donations to us and to every single fundraiser we've supported for the various organizations that have helped us to survive it all.

Why am I reiterating so much of this now? Because the truth is we're always ALL OF US in this together and we're all connected whether or not we want to be or even realize it. This is true not just during cancer, nor just during COVID, but always. COVID has just made more people realize it and yet there are still some who continue to live their lives like they should do whatever they want, whenever they want, without concern for how it impacts others.

[Photo description: Dawn, Ollie and Mario wait at CHEO for caregiver COVID-19 vaccines.]

Last weekend Mario and I got our first Pfizer COVID-19 vaccinations at CHEO as part of the province's Phase 2 where caregivers of stem cell transplant recipients (they're vaccinating every recipient and/or their caregivers within 3 years of transplant) were finally eligible to get vaccinated. It was an emotional day and Ollie was with us to mark it, wishing he could get the vaccine too (he will as soon as it is approved for immuno-compromised children). As most parents would, we got it first and foremost to protect our little survivor. 

[Photo description: Dawn is given her first dose of Pfizer COVID-19 vaccine at CHEO during their caregivers' clinic.]

But the truth is that we would have done it for anyone else's child, too. Just as Mario was a Big Brother and I was a Big Sister for Big Brothers Big Sisters Ottawa to help other people's children. When we first volunteered we didn't know the children or families we'd be helping by volunteering to be mentors. We spent our time and money to help these children become strong and independent adults and I'll tell you it was totally worth it. I know that our not so Littles (both have families of their own now) and both of their moms read this blog. Any person who's volunteered to help someone else would attest to the fact that they felt that they got much more out of doing something good for others than they gave.  

[Photo description: Mario is given his first dose of Pfizer COVID-19 vaccine at CHEO during their caregivers' clinic.]

Getting back to the vaccine, I've watched this week as the AstraZeneca vaccine (that so many were fearful of due to reports of blood clots) was opened up to our peeps in the 40+ crowd and rejoiced in how friends and family have embraced this and went out in droves to find and get the jab wherever they could! Record numbers of fearless, altruistic people who just want us all to do the right thing and take care of each other and end this nightmare finally. Again, I got so many messages from so many of you sharing that you got it, knowing that each one makes my anxiety lessen a bit and increases my hope that Ollie and all of us can safely rejoin the world again soon. We love that so many of you think of us, but know that you are all worth protecting and so are your loved ones, too, so please keep getting vaccinated everyone! 

[Photo description: Ollie high fives Mario after getting the first dose of the Pfizer COVID-19 vaccine at CHEO during their caregivers' clinic.]

Before I sign off, I want to share a powerful and a shockingly familiar story with you. It's about a smiley, kind, smart, determined 13-year old boy named Mateo. I tell you this story and share his photos with permission from his amazing mama who shared them lovingly with me. 

In the summer of 2016 Mateo became very ill and doctors couldn't figure out what it was, so he was admitted to CHEO for a month and a half while they did countless tests to get a diagnosis. By October he had started to grow lumps on the side of his neck and a biopsy finally revealed that he had Anaplastic Large Cell Lymphoma. He also had Hemophagocytic Lymphohystiocytosis (HLH) which is a severe inflammatory syndrome and complicated his ALCL treatment significantly, making him higher risk. The ALCL had also spread to his spleen and lungs by the time he was diagnosed. 

[Photo description: Mateo before being diagnosed with Anaplastic Large Cell Lymphoma.]

Dr. Abbott (Ollie's doctor) was his oncologist and I'm told he adored her (as do we). He began with the standard ALCL treatment that involved 6 rounds of chemo and his disease shrunk on his scans after the first treatments. Suddenly during his treatment he relapsed with lymphoma in his brain and spine. He went blind in one eye. They gave him stronger chemo treatments to try to get him into remission, which made him very weak and sick. The doctors tried desperately to find clinical trials that he might qualify for, but his condition was quickly deteriorating and the timing to get into a trial was more than they had. He also had radiation, but it wasn't enough. They had been told that if he could get into remission he could get a stem cell transplant at Sick Kids Hospital because miraculously his brother was a perfect match. Sadly even the hard core chemo and radiation couldn't get him into remission. The boys begged for a chance at transplant and with no other options left, Sick Kids agreed, but it was very high risk. They both got baptised just before they went to Toronto for transplant. 

Mateo got his brother's beautiful and perfectly matched stem cells, but he was too sick. A week after his transplant he fell into a coma and wasn't expected to live more than a few hours, but ever the determined fighter, he hung on so they transferred him home to Ottawa where he passed five days later in June 2017. His family and friends have missed him every single day of the four years that he's been gone.

[Photo description: Mateo during treatment for Anaplastic Large Cell Lymphoma.]

I believe in the depths of my soul that Mateo and his unbelievably brave family taught our oncology team what they needed to know to save our Ollie. That Dr. Abbott knew how to treat his first relapse and to request the miracle drug Lorlatinib from Pfizer (developed and clinical trials done since Mateo passed) under compassionate grounds after Ollie relapsed the first time because she knew we'd likely need a plan C and had to be ready with it quickly. Thanks to this it was there and ready to access when we needed it and it saved his life.  Mateo helped to save my son. 

His mama and I are forever connected because of our sons. She wanted me to use her son's name proudly and tell this story because it keeps his memory alive and validates for us that every life is important and we're all connected in ways we cannot even imagine. That the sacrifices that we make daily help others and even when we are suffering, others will learn and gain from it. I can never repay her family for their sacrifice, but I will always speak of Mateo as the true hero that he was. 

[Photo description: Mateo at the beginning of cancer treatment at CHEO opens his shirt to reveal a Superman shirt underneath.]

So every one of you out there working through your own fear on the frontlines to keep us all safe, contributing to research, accepting risk for the greater good, taking care of each other, wearing masks, washing hands, staying home during lockdown and getting your COVID-19 vaccine is a helper and a hero in their own way. No one sets out to be a hero, but by doing the right thing they become one.

[Photo description: A clipart character connects dots on the floor with a pen.]

You have literally no idea right now how what is happening to you today impacts others around you and those that follow in your footsteps. Just like Mateo and his family had no idea that although they'd lose him to ALCL, he'd one day help to save Ollie and inspire us to keep helping others after us. I'm so glad that I learned about Mateo and was able to connect the dots between his sacrifice and my son's survival. Connect the dots and draw the  lines between you and others. Be brave and giving like Mateo. It may just save someone else's life down the road.

Hypothyroidism in the Springtime

[Photo description: Abby and Dawn sit on large rocks while Ollie and his CNIB Buddy Dog Hope stand beside them in the late afternoon in a field at the Central Experimental Farm in Ottawa]

It's been a busy month and we're grateful that spring (formerly March) break is finally here to give us a bit of a breather. I say a bit because there always seems to be something else going on and last week and this week it's been doing our interview and footage to tell Ollie's story for CHEO's upcoming annual telethon. It's a simple way we can help to give back because the best way we know to repay people for saving our son's life is to help them with resources to make their lives easier and to save others, too. 

We were also thrilled to participate in the recent annual third-party fundraiser, Snow Angels for CHEO and exceed not only our campaign goal, but the total fundraiser made beyond its goal, raising over $8,000 for CHEO's Oncology/Hematology unit. We are grateful to all who help us to give back to CHEO.

[Photo description: Ollie stands near the kitchen sink where he has been having an online lesson on 3-D shapes and their volume, while his vision itinerant teacher Mrs. Shepherd watches over from the tablet on the windowsill]

Ollie has been relatively well and with the transition to spring, has had a couple of tired weeks. He has been having some significant emotional outbursts lately due to frustration and anger, although he couldn't seem to put his finger on why. He's also been having bad dreams again and not had much appetite.

I honestly think his body and his brain subconsciously remember the trauma we all underwent last year at this time. He had a major melt down in April 8th. When I got thinking about why that might be after him saying he didn't know, I realized that last year on that day we were in Toronto preparing for stem cell transplant and were told he was relapsing again and the transplant was on hold. I don't believe in coincidences, so I honestly feel that he felt the trauma even if he couldn't name it. Usually I am same and have to check the calendar and sometimes this blog to see what was happening last year at this time that might explain my anxiety or general feeling of sadness. 

[Photo description: Ollie rests his head against CNIB Buddy Dog Hope's head as the two sit on his red sofa in his new clubhouse  waiting for the CNIB Spring Into Braille virtual event to begin. Ollie's team won the competition.]

On Monday Ollie saw the social worker at CHEO in addition to his regular bloodwork and check-up in hopes that talking to someone outside the family will help him to validate his feelings. It's awfully hard to support your children's mental health when yours isn't so stable. We are so grateful for the mental health services at CHEO and the help that they give our children.

[Photo description: Ollie sits on the floor of his clubhouse, peeking out from around two blow up NERF battle barriers while wearing safety glasses and pinching his NERF gun toward the camera. CNIB Buddy Dog Hope sleeps on her bed to the left of the frame while the NERF battle went on with mommy and daddy.]

I was sitting in the hall at CHEO's Medical Day Unit (Hematology/Oncology clinic) and wrote part of this while Ollie talked to Sherley and it felt surreal. So many hours spent there writing about our life over the past year and a half. People kept walking by and getting excited to see us such as other cancer- and stem cell transplant survivors and their parents as well as so many oncology staff who took amazing care of us all.

It's always so strange to me that a place you never want to go back to because of so much trauma is also so comforting and feels like coming home somehow. Maybe it's simply because we all have bonded through shared experience and our gratitude for the people who got us through it is so immense and gratitude feels good.

We got a call from Ollie's oncologist yesterday. As soon as I heard her voice only two days after seeing her and not expecting a follow up, my heart leapt into my throat for a moment. Thankfully she understood and immediately after I said hello she said, "Everything's okay."' Breathe. She called to let us know that the last two monthly blood tests showed that Ollie has hypothyroidism (a slow thyroid) and he needs to take hormones to fix that for at least a couple of months. It completely explains the fatigue, mood swings, lack of appetite and his significant weight gain lately. It is a relief to know that this is easily corrected. It's so hard to know if any of these types of things are psychological or physical. 

[Photo description: Ollie sits in a dental chair with his stuffie Llama Llama Blue Pajamas at CHEO's Dental Clinic while the dental hygienist prepares to clean his teeth. Ollie was getting a post-chemo/post-radiation/post-stem cell transplant x-rays and check up.]

We were there last week to visit CHEO's Dental Clinic, too. It's a seemingly little known fact that chemo can severely damage your teeth and in children even stop adult teeth from growing in at all. It's been a constant stressor as we fought him daily to brush his teeth, even on the days when he felt so sick. Thankfully after we got through the torture of x-rays (the plastic cut into his gums so mom had to put a lead vest on and hold the piece just so to enable the x-ray to finally get done...I am starting to feel that I am as radiated as he is, so thank goodness I'm past having more babies) and they cleaned and checked his teeth the doctor confirmed that everything looked great. Aside from them sealing two teeth to prevent future issues, he had no cavities or concerns. One long-term side effect we don't have to worry about!

[Photo description: Ollie sits on an exam bed wearing a ball cap and face mask with two thumbs up while Lisa Garland, nurse and owner of TiredSole Complete Foot Care stands behind him wearing a mask and giving a peace sign.]

A couple of weeks ago I took Ollie to see Lisa Garland, nurse and owner-operator of TiredSole so that she could laser the persistent plantar's warts on his feet. Lisa had reached out to me during Ollie's treatment to offer support. She is the incredible mama of two cancer survivors who were treated at CHEO. She treats a lot of post-cancer patients who often have issues like warts because of their compromised immune systems. She was awesome at calming Ollie's fears and his first treatment was quick and painless. We go back in next week for another treatment, but things are already looking better as he's no longer complaining of pain when he puts his shoes on and walks the dog. 

I've met so many amazing people like Lisa since this all started. I am constantly grateful for the many cancer families who have taken us under their wing and helped us to navigate every step of the cancer and post-cancer world. 

[Photo description: Ollie sits at the dining room table with his back to the camera while facing Mario who is standing behind a plastic deer head with cups in its antlers. The game is called, "Deer Pong". 😆]

Ollie is missing friends a lot right now. We know all kids are missing friends with lockdown, but remember that Ollie has not truly played with friends in over a year and a half now. We know we're almost in the end zone and just have to hold onto the ball for a bit longer to win the game, but man do those last yards feel like the longest sometimes! 

[Photo description: Ollie lies on his back on the sofa with his, eyes closed while leaning on CNIB Buddy Dog Hope.]

Thankfully he has Hope and she has quickly become his best friend. She is companion, playmate, physical trainer, unofficial therapist (he whispers feelings to her constantly) and a reason to get up everyday for him, even if he doesn't always feel like it.

 Today he participated in two online calls with the CNIB. One with coordinator of the Buddy Dog Program, Miriam, who helped us work with Hope a bit to overcome her body sensitivity issues and dislike of her Buddy Dog vest. And the other with Hope's Puppy Raiser and CNIB Marketing Communications Director, Catherine as well as Miriam and a bunch of other Buddy Dog duos. It's awesome that Ollie and Hope are one of only 14 of these dynamic duos in Canada. They were being trained today to do media interviews about the program if asked. Stay tuned for more info in a couple of weeks when the CNIB Guide Dog Program has its graduation and Ollie and Hope graduate officially! 

[Photo description: Mario, Abby and Dawn smile on a walk at the farm while squinting at the sun, while Ollie makes a funny face with his tongue out.]

We take Hope for long walks to the Experimental Farm almost every day and for a little while practice letting her off leash and getting her to follow 

 commands. She's really starting to see Ollie as her leader and listening well to him. 

[Photo description: Ollie walks Hope on her extendable leash while holding on to Mario's arm at the farm at dusk.]

Ollie has also been getting outside more thanks to Hope and spring. Easter weekend he got back on his skateboard for the first time in almost 2 years since testing and diagnosis. Balance is super difficult when you're blind, so as usual, Ollie showed us that nothing is going to stop him from doing what he loves. 

[Photo description: Ollie is on his skateboard, wearing a helmet and wrist guards while holding a victorious hand in the air to celebrate his first time back on the skateboard in almost 2 years since cancer arrived.]

He was pretty good before cancer and a regular at the indoor skate park near us called The Yard. He has literally loved skateboarding since he was barely old enough to carry one. It's one of the reasons to get well that he listed last year at this time when he had relapsed for the second time. It's so gratifying to see him getting back to things he loves. He was just 2 years old when he started and I admit it scared me somewhat, just as it scares me now that he's blind. But then and now he wore all of the safety gear and we let him do it in a safe and controlled way to help him to do it with harming himself as he learns (and re-learns). I remind myself that even though he can't see, he's still the same energetic, eager little boy who wants to try things and push his own limits. He's always been that way and still doing it.

[Photo description: Ollie at just 2 years old on a small skateboard inside the living room on foam mats while wearing protective helmet and pads.]

Most of the time Ollie is content to do tamer things like swing in the hammock with mama...

[Photo description: Dawn and Ollie take a selfie while lying in the hammock on the deck and enjoying unseasonably warm weather.]

Or start this year's vegetable garden from seed...

[Photo description: Ollie sits at a table in the deck and feels the packets of vegetable and flower seeds while preparing to plant them in seed pods.]

[Photo description: Ollie sits on the deck in the sunshine and pushes  vegetable seeds into growing pods.]

 

[Photo description: Ollie's green thumb is obvious in his seeds which began to grow in his mini greenhouse within a few days. Here seeds have started to sprout.]

[Photo description: In May 2020 Ollie was undergoing radiation after relapsing a second time in his brain  and was eager to plant a vegetable garden when he was home from Toronto.]

Last year he begged me to let him plant one despite his neutrophils being low and our concern about bacteria in the soil, but we braved it with gardening gloves. His garden grew really well then, too, but we never got to taste any of the veggies as we were already back in Toronto for stem cell transplant by the time they grew. I've assured him we'll be here to harvest and eat everything this year.

[Photo description: Ollie gets his second doses of two childhood vaccines and his Hepatitis B shot at CHEO while holding Llama Llama Blue Pajamas earlier this week.]

In other news over the past few days:

- My long term disability (LTD) claim was finally approved (a year after my work sick leave ended and 6 months after I actually applied) by the insurance company

- We just got scheduled for our COVID vaccines as caregivers to a stem cell transplant recipient (Phase 2 provincial vaccine priority). We can't wait for Saturday!

All in all, despite the seemingly never-ending lockdowns and missing people, a pretty good start to spring. Hope yours is shaping up well (in spite of pandemic), too.

Sister S-HERO Day (Part 1)

In my wildest dreams a year ago I did not imagine what we'd survive to get to today. 

Last year in March we were all reeling from Ollie relapsing in his brain and going blind a few weeks earlier, getting into remission, being told that he'd need a stem cell transplant, finding out we had three perfect matches on the registry only to be told that because of COVID-19 just arriving we'd need to use Abby's half match stem cells instead and moving to and settling in Toronto to ready for stem cell transplant. And all while navigating the unknown of a pandemic.

This day last year was one of the most emotional of my entire life. It's right up there with my wedding day and Abby and Ollie's births in terms of most memorable and beautiful. For on this day, March 31st, 2020, our then 11-year old donated lifesaving stem cells to her 7-year old brother after enduring 5 days of painful G-CSF injections to make that possible for him.

If you've been following along, you'll recall that we were first supposed to use one of the three perfect matches on the international stem cell registry. Unfortunately COVID-19 hit Canada just as we were readying to get Ollie to transplant and because of issues related to flights, timing, and COVID unknowns, we were told that even though Abby was only a half match, she was still the best choice. 

At the time we didn't know much about partial matches or their effectiveness except that only 25% of all families had at least a partial related match. As his sibling, Abby only had a 50% chance of even being a half match for him. Last year her being a half match did not seem like our best chance at long term survival for Ollie, but as Abby told us then, her stem cells are overachievers. 😆 Since the beginning of the pandemic the medical world has learned a lot more about how to do successful haploidentical or half match transplants.

So many times over the past year as things were so hard on Ollie's journey to wellness I have tried to remember the strangely beautiful by-products of cancer. Abby's S-Hero day was one of the best. I think back to those 6 hours at Sick Kids Hospital in the Dialysis Unit where I watched her maturely and selflessly allow every drop of blood in her body to go in and out of her while cycling through the dialysis machine that collected her stem cells for her brother. Stem cells that would give him her DNA...the one thing that differentiates her from everyone else on the planet and that she'll now forever have to share with him. 

I know she was scared...I was terrified for her. Not so much of her donating - which she did with incredible grace - but of her donating and despite her desire and sacrifice to save him, it not working for him. That prevailing fear has stayed with me for 365 days through:

-  the anguish of his second and so unexpected (by optimistic us anyways) relapse just 8 days before he was supposed to get her cells on April 8, 2020, 

- the uncertainty of radiation and a new untested drug called Lorlatinib (which proved to be a miraculous combination), 

- his actual stem cell transplant last summer, and 

- his 254 days of recovery since. 

I feared his transplant not working not just because it meant we'd be battling cancer again, but also because I feared Abby having to live with the agony of not being able to save him after all she'd sacrificed. I worried about losing my son AND potentially losing my daughter to mental health issues if her stem cells didn't work. Thank goodness God and science were with us and Ollie has remained well with NED (cancer speak for No Evidence of Disease).

Since her stem cell donation, Abby and I have become public advocates of stem cell swabbing and donating, doing many interviews and writing articles whenever the opportunity presents itself. We know of at least a few young people who have gotten their swab kits from Canadian Blood Services and are now on the registry because they were inspired by Abby and Ollie. This is where I also want to remind anyone reading that if they're on the registry (or knows anyone who is), don't forget to ensure that Canadian Blood Services has up to date contact information to reach you if you are a match for someone! Today more than half of all potential donors can't even be reached! Also, swabbing clinics can't be held due to COVID and there have been 70% less people joining the registry over the past year. We NEED healthy people between 17 and 35 to click the link above to help us save more Ollies. Not everyone has  Abby in their family or a match on the registry right now and we don't ever want to hear about a Canadian dying because they couldn't get a match. Not on our watch. Right now we need Canadians to help other Canadians as they're focusing on using Canadian donors until COVID is over and there aren't enough on the list. 

We've also heard from other families who found this blog when searching for stem cell transplant info who have told us how grateful they are that we have shared this journey and how it helped to assuage their own fears about their children's stem cell transplants. To-date we know three of these families have gone through their own successful transplants and their children remain well. These things make the public sharing of our private emotions, challenges and fears worth it. My grandma (who understood cancer too well having helped my grandpa to fight it three times during their 41 year marriage before he passed) always said if you can help someone, you should. I know she'd be proud of how we've handled it all, held on to hope and our belief in God's goodness and tried to pay it forward to help others.

Today we're all well physically and getting better mentally slowly. The transplant and Abby's donation have changed all of us in ways that are sometimes hard to explain. Mostly in the way that we are connected to each other as a family. Like our bond is ironclad and unbreakable now. Like somehow because of the transplant we share the same heart. 

Abby's changed so much in the last year and it's hard to tell what's attributable to cancer, stem cell transplant, pandemic and just normal growing up. I'm sometimes hard on my girl in terms of expectations because I know better than anyone what she truly is capable of and what kindness she has within her. The other day she was feeling down about online learning and her social life (or lack thereof due to COVID) and said what had she really accomplished this year? I looked at her incredulously and told her, "What have you NOT accomplished this year? Donating stem cells to save your brothers life, becoming a nationally recognized advocate and writer for stem cell donation and empathy during a global pandemic, got your first paying job at 12 as a writer, were a good friend, sister and daughter and still got decent grades while doing online learning to keep your brother safe...you're right...what have you  been doing wasting your life like that?" 😂

I will never forget the overwhelming love and gratitude that I felt for her on this day last year. It sustained me in the weeks after as so many unexpected and hard things happened before he finally got her beautiful cells on July 20, 2020. S-HERO always.

* Note: Abby gets two S-Hero days - Part 1 now because this is the anniversary of her actual donation and Part 2 in July on Ollie's Re-birthday as that is the day that she completed her S-Hero mission. More to come!