"Hyper"-charged Back to School and Childhood Cancer Awareness Month

[Photo Description: Ollie lies on a hospital gurney hugging CNIB Buddy Dog Hope in CHEO's Medical Day Unit (MDU) during his August bloodwork and checkup.]

It has been a busy 2 months since I last updated the blog in mid-August! I figured I'd better write an update as I am starting to get private messages from followers wondering if we're okay.

I expected to update before now, but a few minor developments (I'll elaborate later in this post) have kept me busier than expected and we had hoped to have had scans by now and be able to confirm if he was still in remission. Unfortunately we all got colds the past couple of weeks (many many COVID tests taken to be certain that is all it was for each of us in our turn) and had to postpone Ollie's original scan date last week until October 19th, so we don't have any news on that front yet and while we are at it will ask you to include Ollie in your prayers for the next week for clear scans again.

[Photo Description: Ollie proudly wears his white Kids Kicking Cancer Canada gi and new yellow orange belt in the living room while standing on an exercise mat with Hope at his feet after his virtual belt grading.]

Backtracking a bit, the end of August was busy with getting ready for back to school. Ollie was proud to get his yellow orange belt through Kids Kicking Cancer Canada! 

[Photo Description: Ollie, students and Senseis do pushups while wearing their gis and masks at an in-person class of Kids Kicking Cancer Canada - Ottawa Chapter, while CNIB Buddy Dog Hope lies beside Ollie's mat wedding her yellow CNIB vest.]

All summer Ollie has been attending Kids Kicking Cancer Canada in person at the Maplesoft Jones Centre/Ottawa Regional Cancer Foundation's facility. CNIB Buddy Dog Hope has gone with him and even helped to calm others in the class, so she's invited to all classes that Ollie wants to bring her to now! 

[Photo Description: Ollie sits beside Hope and Child Life Specialist Manon on a gurney in CHEO's Medical Day Unit (MDU) with one arm around Hope, while nurse Kerri gives Ollie the first dose of his last four live childhood re-vaccinations.]

Ollie also got his first dose of the re-vaccinations for the live vaccines (Measles, Mumps, Rubella and Varicella) at the end of August. Only one more set of these on October 31st and he will be fully re-vaccinated! That's 30 doses of childhood vaccines plus 3 COVID vaccines in the past 18 months! He was also told by his team that he could bring his Hope with him for this and any appointment at CHEO where she could be a support to him. As usual Hope was amazingly well-behaved and calmed Ollie like few others can. 

[Photo Description: Abby wears her backpack and stands on the front porch with feet apart and arms crossed on her high school orientation day. The sharing of this photo was authorised by Abby.]

September has been consumed by back to school and starting all of the lessons and activities again! Abby started high school at her special arts school and is settling in nicely. She is becoming more independent and responsible and has an active teenage social life these days, too. We're trying to give her as normal a first high school year as possible given how abnormal the last three years have been for her and all that she's sacrificed to keep her brother well.

[Photo Description: Ollie stands on the front porch smiling and giving two thumbs up, holding his mobility cane with his backpack at his feet on his fussy day of grade 5!]

Ollie started back to school in grade 5! He now wears a size 10.5 men's shoe already and is among the tallest in his grade 5/6 class already. This is evidence that his thyroid growth hormone has been working well (until recently, but we'll get to that a bit later). Kids who have had cancer often either have early onset puberty or do not enter it at all without the help of hormone therapy. His endocrinology team has said that as he's starting to move into puberty, they do not intend to slow it down since the growth is where they want him to be, even if a bit faster than he otherwise would experience it.

[Photo Description: Ollie sits at the dining room table reading his French homework in Braille.]

He's back with his amazing Vision Itinerant teacher Dawne and has a sweet new Educational Assistant (EA), as his awesome EA from last year did an accelerated pilot program this summer to become a teacher this fall. She will be missed, but we are grateful for all that she did for Ollie and know how lucky her new students are to have her. His English and French teachers this year are the incredible teachers that Abby had for grade 6 when Ollie was diagnosed. He also has a couple of subjects with the incredible and kind teachers who were his first visitors in hospital during round one of chemo. His gym teacher was Abby's, too, is his same as last year and was and is so committed to adapting sports for him. He came home telling me about capture the flag and how she had the kids on the other team all wear beeper boxes so that they couldn't sneak up on him and steal his flags because he can't see them. I remain so incredibly thankful for his entire educational support team and all that they do for our boy.

[Photo Description: Ollie stands in the schoolyard  on the first day of grade 5, holding his mobility cane and giving a thumbs up with his vision itinerant teacher, Dawne beside him. Photo shared with permission from Dawne.]

We'll focus a lot on the French Immersion side of the shop this year. Ollie remains behind in this subject area having missed two years of instruction thanks to his treatments and a lack of French instruction in his year in virtual school. Also, apparently blind and low vision kids typically don't do French Immersion (50% of the day in French) - they either do core French (1 period out of 4 in French per day) or are exempted from French altogether in their Independent Education Plan (IEP). 

[Photo Description: Ollie stands outside of the school on Terry Fox Run Day wearing his Fight Like A Kid sweatshirt with the Gold Childhood Cancer Awareness ribbon made by Littlepressco. He holds his mobility cane under his arm and a Terry Fox Run sticker in his hands that reads, "I'm not a quitter. I'm running for...Griffin, Lily and CHEO friends still fighting."]

Ollie was given the option to go down to core French, but was insistent he could do it, so I'm working with his amazing French, Resource and Vision Itinerant teachers to modify the curriculum to set him up for success until he is fully up to grade level in French. It is more challenging for a blind kid to learn French Braille, but he is determined and smart. Last year he fully caught up in two missed years in all other subjects as well as jumped 2 grade levels in Braille, too. All because we accommodated, supported and believed in him. So now we'll do the same in French. And he'll show everyone (as he always does) what resilience and perseverance can do. Ollie inspires me daily to do more than people expect I can.

[Photo Description: Ollie and Dawn pose in front of a Make-A-Wish Eastern Ontario banner at a recent Golf Tournament. Photo courtesy of Sharon Forbes, Make-A-Wish Eastern Ontario.]

That's part of why I do so much advocacy and fundraising for organizations that are important to us. To that end, September was Childhood Cancer Awareness Month, and a busy one it was! 

We started out filling in for another oncology family who was supposed to speak at a golf tournament being held for Make-A-Wish Eastern Ontario, but was admitted to hospital unexpectedly days before. Often cancer families are in this situation and we ourselves have experienced this in the past, too. Ollie and I drew the raffle tickets and spoke about Ollie's story and what his wish meant to him. Ollie caused a flurry of sales when he told the attendees that there were 200 tickets to be sold and they'd only bought half of that and another kid like him might not get their wish if they didn't buy more! 😆 He was honestly so charismatic and inspiring that the entire tournament was in love with him. 

[Photo Description:  A masked Ollie holds a CHEO Teddy Bear in the nursery in the CHEO Dream of a Lifetime Home for 2022 during the official media launch.]

The next week we got a last minute call from the CHEO Foundation asking if we'd fill in for the oncology family that was going to help launch the CHEO Dream of a Lifetime Home Lottery for them. Sadly this family had also been unexpectedly admitted to hospital with illness. Mario and Abby had school and work obligations, so Ollie and I represented. You can see the launch and our interview here. He was a bit tired and shy about the official launch part, but did amazing at the one on one interviews. You can read another account of the launch event with Ollie's interview here. Finally, I did an interview with Sam Laprade on her CFRA An Hour to Give session on the CHEO Dream Home. You can listen to my interview starting at the 33:58 mark.

[Photo Description: Ollie sits in the driver's seat of a golf cart decorated with gold balloons with Sensei Lyne sitting beside him and Dawn standing beside her at the 2nd Annual Kids Kicking Cancer Canada Ottawa Golf Tournament. Photo courtesy of Sensei Reesa.]

Finally, we were glad to be asked to be Ambassadors for the 2nd Annual Kids Kicking Cancer Canada's Ottawa Golf Tournament (no filling in for others this time). This time we got to spend the day in the beautiful fall weather, cruising around in a golf cart delivering food to volunteers, talking to golfers in the tournament and later delivered a testimonial as to the difference that the program has made in Ollie's life. 

[Photo Description: Dawn makes her eleventh blood donation wearing a mask at Canadian Blood Services in October 2022. Her milestone 10th was in July 2022.] 

In addition to all of this, I'm working  full-time, am on various committees and councils for pediatric cancer and blindness and continue to work on several cancer-related studies. It's a lot, but I feel so grateful to be well enough myself to do these things and to pay forward the incredible blessings that we've been given. As we move into the winter some of these commitments will be completed, lightening my load somewhat. 

[Photo Description: Ollie and Dawn are masked and sit on the sofa in the living room of the CHEO Dream of a Lifetime Lottery Home.]

One of my biggest mental loads still is, and likely always will be monitoring Ollie's health. To illustrate how important this remains, even though he is more than two years post transplant we had a little medical issue over the past 6 weeks, too. 

[Photo Description: Ollie has blood taken at CHEO for his thyroid tests in September 2022.]

In the first weeks back to school we started to see little changes in Ollie: 

- Being short-tempered; 

- Waking in the night each night (he hasn't done that regularly in about a year);

- Waking up at 5 am daily after waking in the night and not sleeping his usual 10 hours per night (getting about 7-8 hours per night maximum); 

- Falling asleep in French class in the afternoons and it being really hard to wake him;

- Sleeping 2-3 hours at midday on weekends (normally he insists on staying awake even when he's tired);

- Complete lack of appetite and is having to almost force food down his throat;

- He continued to lose significant weight (he'd lost 9 pounds in the month after stopping his miracle cancer inhibitor drug Lorlatinib, which was expected given other people had after stopping) rapidly;

- Unexplained constipation and diarrhea again when we'd finally gotten bowel movements settled over the past 6 months after 18 months of instability after transplant; 

- Nervousness and anxiety (he'd started getting stressed again about scratching, dropping or breaking things and ask us constantly if he had. He used to do this whenever he was really anxious, but we've worked on it with the child psychologist and in August and early September when he'd gone off of the Lorlatinib it had disappeared entirely, then suddenly came back 6 weeks later);

- Heat intolerance when he'd have his plantar warts lasered, even though he'd done the treatments for a year and never complained that it ever hurt; and

- Night sweats.

[Photo Description: A masked Ollie checks his Braille on the Perkins Brailler in the Braille Room at school. A small black lab stuffie wearing a CNIB vest sits beside him on the table. Photo courtesy of Dawne Smith-Appell] 

It was the meltdowns and falling asleep during the day that made little bells go off on my head in the third week of September. This was just after his school team started wondering if he really was unhappy in French Immersion and suggested we might need to take him out. I started thinking about when we'd seen these symptoms before. At first it was scary because many of them are also symptoms of cancer. But I breathed deep and thought harder and remembered that after transplant when we'd gotten home and started seeing outbursts, fatigue and many of the same symptoms, it was his thyroid causing issues. Then I started thinking about what could make his thyroid meds stop working properly and I remembered that when he'd gained a lot of weight on Lorlatinib after transplant, they'd needed to bump his synthetic thyroid hormone med up because they told me it had to be calibrated to his weight. He'd lost 18 pounds in 2 months, so I realized he was likely experiencing hyperthyroidism instead of the hypothyroidism that he started taking the med for. Essentially I was certain he was taking too much thyroid medication because of his weight loss and this hadn't been flagged as a concern by his team at our last checkup at CHEO in August, even though they'd commented on the rapid weight loss. 

I verified in his MyChart online that they hadn't measured his thyroid levels by checking his TSH and T4 levels in his bloodwork since April. So I sent messages to the endocrinology team and his oncology team to explain and request a blood test. When the nurse practitioner in endocrinology called me back, she confirmed that it sounded like his thyroid was now overactive and ordered the blood test. She also said we would check his cortisol levels at the same time to be sure they were okay. Our team in CHEO's Medical Day Unit was kind enough to squeeze us in on the Friday morning for the test to keep things easier for Ollie to have it in an environment he knew well versus going to the lab directly. Monday I got the results in MyChart before I got a call from the Endocrinologist. Cortisol levels were fine.  But he did have high T4, low TSH. Hyperthyroidism. The Endocrinologist called about an hour later to confirm it, to commend me for seeing it and asking for the blood test, and to tell me she'd send a new prescription to the pharmacy for us that he should start the next day. She said that it would take 4-6 weeks for things to level out on the new meds and if we were coming in for routine bloodwork at the end of October anyways, we'd also check his levels again to see if the levels were normal or we needed to adjust the dose again.

[Photo Description: Ollie wears a helmet and is being silly while riding his Berg peddle go kart at the Central Experimental Farm with both hands in the air.]

So I was able to go back to his team at school and confirm that it was his thyroid, not bad behaviour or boredom. And Ollie insisted he was going to continue in French Immersion even if we have to work harder this year to make up for the two missed years when he was sick. He says if he could catch up on everything else last year after two years away, he can catch up on French this year, even with thyroid issues. 

[Photo Description: Ollie and friends from his Beep Kickball with the Miracle League of Ottawa.The kids are outfield in the last game of the season that was kids against blindfolded parents. Of course the kids won!]

Despite these challenges this fall, my boy has also participated in the Terry Fox Run and made the Cross country running team. He didn't go to the meet, though, as it ended up being the same day as a special event day for the Blind Low Vision program and he attended that event instead, where I'm told he was a real leader and helped the little kids a lot! He's also finished his Beep Kickball season and returned to his skateboarding lessons at The Yard with instructor Jordan. He's even inspired another little friend with vision loss to start taking lessons just before him on Tuesdays with Jordan! 

[Photo Description: Ollie porches on the edge and gets ready to drop in on the bowl at skateboarding lessons at the The Yard. Instructor Jordan holds his hands for balance.]

Mario and I both continue to work from home, with him going into the office the odd weekend day to do server work for a few hours as needed. We are grateful for the flexibility that our employers allow us to work around Ollie's school drop off and pick up schedules, as well as his medical appointments. Having to figure out a one-to-one daycare situation for him as well this year would have been a huge challenge. There have already been a number of days where there has been a shortage of Educational Assistants at Ollie's school and two afternoons that I've had to keep him home for lack of support already. These are the same educational workers that the Ford government and the Education Minister Stephen Lecce are refusing to negotiate fairly with. The same ones that my son and special needs kids like him need to get an equitable education. 

So our work flexibility may be even more necessary in the weeks to come if the mediation fails and educational workers strike. We had so hoped that this year could be completely normal, but between educational worker issues, difficulty getting COVID vaccines that should have been available months ago and more COVID spread, and flu season happening earlier than normal, it looks like we're destined to have another year of disruptions. Still grateful to have these problems than those that we've been dealing with the past 3-years, but wouldn't it be nice not to have to keep adapting?!

[Photo Description: Mario describes a small pumpkin to Ollie and holds it so that Ollie can feel it at the pumpkin patch at Miller Farms.]

So as we cruise into this week, which marks our three year anniversary of landing at CHEO in pursuit of diagnosis, and our twice annual MRI and CT scans to see if he's still cancer free, we once again thank you for continuing to follow our little story. Shockingly we are nearing 400,000 views of this blog around the world in the almost 3 years I have been writing it! Once again, I humbly ask for your ongoing positivity and prayers for clear scans this week. We'll share a short blog post as soon as we have results.

In the meantime, be kind to each other and yourselves, and please don't take any of your blessings for granted. See below for Ollie's recent Thankful Friday inspiration in his class from the day they also did the Terry Fox Run at school. Let us all see the world as Ollie does despite all of the suffering he's endured in his young life.

[Photo Description: Ollie's brailled message for Thankful Friday contribution on Terry Fox Run Day. It reads, " I am grateful for life. I am grateful for friends. Everyday, I am grateful for those who survived." Photo courtesy of Leanne Endicott]

Transplant Anniversary Highs and Lows

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.

 Photo description: A masked Ollie pushes the cart at Toys R Us with new Beyblade sets. 

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.

Photo description: Dawn sits in a lounge chair connected to a machine while she donates blood at Canadian Blood Services on July 20, 2020 in honour of Ollie one year anniversary of his stem cell transplant and Abby's Hero Day.

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!

Photo description: Ollie eats a piece of his #OlliesPizza from Gabriel Pizza to celebrate his transplant anniversary.

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!

Photo description: Abby sits on the sofa with legs folded wearing a backwards ball cap and sitting beside Chewbacca the cat and CNIB Buddy Dog Hope.

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!

Photo description: A masked Ollie stands on a raised platform reaching for the monkey bars in front of him in his school's playground.

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.

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.

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.