The Official End of Treatment

[Photo Description: A masked Ollie and Dawn pose on the first floor of CHEO under a street sign that reads, "Memory Lane".]

Yesterday was our last of three years post stem cell transplant regular oncology checkups and bloodwork at CHEO. How naive was I when I thought we'd be done with cancer in 8 months of treatment maximum?! 😆 It's been almost 4 years since we started at CHEO!

On October 22, 2019 we started our medical journey at CHEO when we arrived for our first tests, so today we took a little trip down memory lane. 

[Photo Description: Ollie, Micah, Isaiah and Theo sit in the lab waiting room talking and watching tablets.]

We started at the lab where we bumped into friends Paula and her boys Isaiah, Micah, and Theo who were also waiting for bloodwork. They were one of the many amazing families who helped during our battle. How fitting that we had a reminder of the army that helped us over the past 4 years.

Also fitting that while in the unusually long line waiting at the lab, CHEO's fearless leader, Alex Munter came along, said hi and set about trying to find out why the line up was not moving faster and updating us soon after. A simple example of the leadership at CHEO that has kept things moving for us even during the difficulties of the pandemic. In February 2020 Alex came to Ollie's hospital room after the story about his missing stuffed llama went viral. At that time Alex told Ollie if he needed anything to let him know. Needless to say, Ollie and I have taken him seriously and never been shy to ask for the things we think can make things easier for families like ours. In turn Alex has always considered every request or suggestion and done what he could to help. So in keeping with his action-oriented approach, he followed up tonight by email, asking our opinion on some other possibilities to make the lab easier and more efficient for families. How lucky are we to be able to influence even better care for CHEO families?!

[Photo Description: Ollie wears his CHEO shirt, shorts and a mask and poses in front of a mural of children playing in a tree with the word CHEO in a cloud above. Ollie is giving two thumbs up and holds his cane in the crook of his arm.]

After Alex left and we waited with our friends for a while, I did have to go into the lab reception area and advocate to be accelerated so that Ollie's bloodwork would make it into the courier by 2 pm to head to Germany for his final inclusion in Dr. Woessman's Anaplastic Large Cell Lymphoma relapse research and be tested one last time to determine if there is any Minimal Disseminated Disease (MDD). It has been negative (or clear) every single time we've done it the past few years. This has given me significant comfort in concert with his scans, even though the test is not yet widely used for lymphomas. 

They did accelerate us to make the courier and Ollie was a complete champ. We did it so quickly that we forgot to ask for the freezing spray that numbs his arm before the poke and he didn't even make a peep and only mentioned it after we were done, saying his arm was a little sore. From a boy at least 3 of us had to hold down 4 years ago as he kicked and screamed during pokes even with freezing spray, to this calm and capable of handling anything boy. What a transformation.

[Photo Description: A photo of posters in English and French found on the reception desk in the CHEO Medical Day Unit promoting the Patient and Family Advisory Council (PFAC) and Campfire Circle Family Picnic for oncology families. This is one of the many initiatives that the Oncology PFAC that I am a member of has organized to connect with and make cancer care easier for new families.]

On to oncology where we had a final checkup and they told me this was really it...that there would be a check in once a year, but no scanning unless there were symptoms and they were a phone call or an email away, but didn't need to see us again unless we really needed them. I admit I got teary and a little fear gripped my heart all of a sudden. I've felt somewhat this way each time we reached a new milestone where we'd reduce the frequency of visits, but this was really the last one. They consider him to be well and completely stable and no longer in need of them. After my panic and tears I used my best Kids Kicking Cancer Canada power breathing to help the panic pass. We gave big (masked) hugs to our post transplant clinic Nurse Julie who has taken amazing care of us the past two years, and helped me through more moments of panic than I could count simply by responding quickly and getting us access to whatever we needed to keep him well. She is one of the most responsive health care practitioners I've ever met and she has been such a blessing to us.

[Photo Description: Ollie eats a sub at the Oasis Cafe at CHEO]

From there we had one more of the likely hundreds of subs that we've eaten at the cafe. For whatever reason the food even tasted better today than it usually does.

[Photo Description: Ollie lies on the table and is connected to 13 wires for his routine EKG in cardiology.]

On to cardiology for EKG and Echocardiogram  and I laughed out loud remembering them trying to get Ollie's hospital bed down that corridor after relapsing in his brain. I did not imagine then ever being able to laugh about anything that happened to us during that awful time. Time and doing the emotional work really does heal wounds (as my therapist reminds me).

[Photo Description: Ollie lies on the table for his Echocardiogram as the technician's gloved hand can be seen using the probe during his test.]

Next we popped up to 4 North to say welcome back from mat leave and goodbye to our angel on earth, Dr. Abbott. Our other oncologist angel, Dr. Brianna Empringham is also on mat leave right now. After a short visit, big hugs with Dr. Abbot for Ollie and I. She marveled at how tall and lean Ollie was since she last saw him a year ago (he's lost 22 pounds since stopping the Lorlatinib a year ago and built a lot of muscle playing all of the sports he plays, plus he's still in the 97th percentile for height for his age). She told me I was a great hugger. I could hug her forever and never let go after all she's done for our family. LOL Grateful to have also seen a bunch of our incredible nurses, our favourite pharmacist and one of our child life specialists, too.  

We were too busy hugging our team in MDU and 4 North  to take pics! And as they all reminded us, we'll see them in October at the SIOP international oncology conference that CHEO is hosting and Ollie and I are speaking at on patient-centred care. I teased Dr. Abbott that they asked us because I was clearly not afraid to ask for what we needed. Dr. Abbott told me that I always asked in the nicest and most respectful, yet assertive way, and she thought I should be teaching a class to all little girls so that they'd all get what they needed as they grew up. As an outspoken person who has often been concerned that she is seen as too loud or brash, I was flattered that she saw me that way. She's done everything I asked and more for 4 years. Not once did she ever say no to any of my ideas or make me feel like I wasn't an equal partner in Ollie's care team. She always left us in good hands when she couldn't be with us and doesn't take any credit for her leadership in helping him to survive. She could ask virtually anything of me and I'd do it for her in a heartbeat, no questions asked. She thanked us for the visit, wished Ollie a good start to his school year next week and promised she'd see us in October at SIOP.

Next was the requisite visit to the gift shop. And for once my brave boy left empty handed because he already had all of the Lego sets that he wanted and couldn't rationalize me spending $8 on the world's tiniest harmonica that he'd admired. So he picked a CHEO shirt for daddy to match the one he himself already had and left happily. He's maturing so nicely and better understanding that while it's nice to have things, what matters most is having the best people in your life. 

We had one final stop before we could leave. Ollie indulged me and went along with going back to the CHEO playground we'd stumbled upon on our very first day at CHEO during testing before diagnosis on October 22, 2019. 

The playground is located behind the main building of CHEO, near the Children's Treatment Centre and Roger Neilson House. 

[Photo Description: A split photo. In the left is a photo of 7-year old Ollie hanging down headfirst and making a crazy face from the top of the playground slide at CHEO on his first day at CHEO for testing on October 22, 2019. The second image is of Ollie standing in front of the same slide with two thumbs up and holding his mobility cane on his last official day of oncology and post transplant treatment, August 28, 2023.] 

On that day almost 4 years ago we had zero idea of how much our lives were about to change nor how important CHEO and everyone who worked there would become to us. The 7-year old kid on the left of the photo above (who was not evidently sick or short of energy when diagnosed with stage 3 cancer) was ready to dive headfirst down the slide like the crazy brave kid he always was and used this bravery every one of the last 1,406 days since we started at CHEO. The courageous kid was more subdued this visit and opted to just pose in front of the playground instead of playing on it. A sign of his newfound maturity as he becomes a tween and is slowly moving away from what is left of his complicated childhood.

[Photo Description: A split photo. On the top is a selfie of Ollie and Dawn smiling while sitting on the wooden swing in the Little Garden on October 22, 2019. On the bottom is a photo a passerby took of Ollie and Dawn posing in the same garden beside the Celebration Bell on August 28, 2023.]

Finally, we reached our ultimate destination in CHEO's Little Garden located in the little forested area behind the playground. 

The bell was first rung by Hillary McKibbin to mark her remission of her Aplastic Anemia. Due to the threat of COVID and her being severely immuno-compromised, her family needed a bell that she could ring outside safely, so her incredible mama Kelly McKibbin built one and later donated it to CHEO so that ALL families could celebrate and mark milestones. 

[Photo Description: Ollie holds the string of the Celebration Bell in the CHEO Little Garden, readying to ring it to mark his last official day of oncology and post transplant treatment.]

I met Hillary's mom Kelly online just a few months before Ollie was diagnosed. I'd seen Hillary's story and plea for stem cell donors in the news and her story called out to me and touched me in ways I didn't understand then. I felt called to follow her journey and connect in empathy with her brave mama. Kelly and I had corresponded from time to time for months via Twitter private messages as I sent her encouragement and marveled at their bravery in telling their story so honestly and publicly. When Ollie was diagnosed, Kelly was actually among the first people that I told and we were both shocked that we were suddenly living such similar lives. I believe it was divine intervention that brought us together and we supported each other throughout the pandemic as we both put everything we were into getting our children well, keeping them safe, and encouraging others to donate blood products for kids like ours. 

[Photo Description: A photo of one of the gold plaques with black writing on the purple post of the bell that reads, "Celebration Bell: This community bell is for all families to enjoy. Ring it to commemorate a milestone, a recovery, or an achievement that brings you joy." The text is also translated into French and the CHEO Foundation logo is on the bottom.]

When we found the bell I read every word aloud to Ollie and got choked up as I read these words to him. Today we celebrated the milestone of being done our final of three years of regular oncology checkups, officially being off treatment, fully recovering from his cancer and stem cell transplant, and this was certainly an achievement that brought us joy. And we were marking the occasion on Hillary's bell. I couldn't imagine a more perfect way to end our last official day at CHEO.

We finally made good on our promise to our friend Hillary that we'd one day find her bell and ring it, too. So here we both are ringing the Celebration Bell. We rang the heck out of that bell (but don't worry it's still perfect and ready for many many more celebrations for other families!)!

[Photo Description: The commemorative plaque on the post of the bell that thanks all who contributed to the bell's creation.]

Now realistically, cancer survivors don't ever get to be done with their medical journey. While Ollie is officially done in oncology, he continues to be seen twice a year by endocrinology and his bone specialist for his hypothyroidism and osteopenia. He'll still visit opthamology and his retina specialist at least annually. As big things happen in his life and he transitions through different growth stages where he may be triggered by all that he's survived, we'll still see the social workers or child psychologists when needed. He has a pulmonary function test in September to ensure his lungs are still healthy. Still a lot, but so much less than our normal of the past 4 years. 

And I'm still on the Oncology Patient and Family Advisory Council (PFAC), a Family Leader for the CHEO Research Institute, and a member of the CHEO Inclusion, Diversity, Equity, and Accessibility (IDEA) Committee, so I'll still be part of the active CHEO family. And I'm still a Co-Lead of the Education and Training Matrix for the Canadian Pediatric Cancer Consortium, so am committed to continuing to help make things easier for families at all pediatric cancer centres across the country.

Ollie was randomly emotional yesterday, too. Maybe in part because he felt mine, but there were lots of extra hugs from him and requested by him throughout the day. One day he'll truly understand how his army wouldn't give up on him and saved his life multiple times. He is one of their many successes and miracles.

I feel sad AND happy, AND fearful AND hopeful about reaching this milestone and the ending of a huge part of our lives. We remain so grateful every day for the unbelievable people at CHEO who have helped us to survive so much. They truly treat the whole family and make you feel part of theirs. 

I think the Buddhist Proverb below sums up pretty well how I feel right now. Stay tuned to hear more as we get started on our next new beginning.

[Photo Description: A quote that reads, "In each loss there is a gain, as in every gain there is a loss, and with each ending comes a new beginning. - Buddhist Proverb"]

"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]

1000 Days

[Photo Description: Ollie wears a mask and walks with Hope while using his mobility cane in the boardwalk at CNIB Lake Joe.]

It's hard to believe that the summer is more than half over already! We've packed a lot of living in the past 6  weeks and over the next couple will turn our thoughts to getting ready for school. But for now, we continue to try to squeeze every ounce of joy and goodness out that we can as we understand so well how everything can change in a moment and sadly we have several little friends in relapse or preparing for transplant this summer. 

We kicked off our summer with a CNIB Lake Joe Holiday Week with the whole family. We had such a blast last summer that we all wanted to go again this summer (even the reluctant teen went along with the plan and had a great time). It also gave us the opportunity to re-orient Ollie with the camp and let him practice doing things for himself with our guidance to prepare him for the second week there when he stayed alone for the youth camp. We're grateful for the continuing requirement to be vaccinated for COVID and that everyone coming to CNIB must be tested for COVID to ensure no one is unknowingly bringing it to the kids. The nurses on-site are also there to monitor and assist if needed during the week. We also continue to mask indoors and minimize our potential exposure anywhere we go in public, although as a general rule we don't wear outside anymore unless we are in prolonged close proximity with others.

[Photo Description:  Cathy, Dawn, Ollie, Abby and Mario sit on a bench under a tree at CNIB Lake Joe while Hope sits at Cathy and Dawn's feet. All are wearing masks.]

On the first day we were there we were allowed to have a very special visitor. It turned out that Hope's CNIB volunteer puppy raiser was staying nearby in Muskoka with family and when I invited her to meet, she didn't hesitate to come! For 15 months we'd built a friendship online, but never met as she lives in Halifax! She was as lively and sweet in person as by phone and messages and while she was uncertain if Hope would remember her, it was clear as Hope gleefully licked her face and pranced around her that she did. I was struck again by the incredible generosity and selflessness of people like her who voluntarily raise and love a pup that they know they'll have to give up after a year to help someone with sight loss. We had a short, but lovely visit with Cathy and her brother in law who had kindly driven her to the camp and it cemented our ongoing love for her and the incredible gift that she has given Ollie.

[Photo Description: Ollie and Hope on the stand up paddle board on Lake Joseph while Mario walks beside them for support.]

The rest of the week didn't disappoint, either. Ollie did all of the usuals - kayaking, stand up paddle boarding, swimming, tubing, water sliding, archery, and even mini golf this year on their new course! 

[Photo Description: Ollie, Dawn and Hope on the boardwalk in front of the lake at CNIB Lake Joe.]

Ollie was particularly thrilled when he was able to entice Hope onto the paddle board with a treat and she settled right down and rode around with him! 

[Photo Description: Mario stands behind Ollie and helps him to aim and position his bow and arrow towards the target at CNIB Lake Joe.]

The week was of course more populated than last year, but still not that big and all participants had to be vaccinated and have negative COVID tests to attend. 

[Photo Description: Julia and Guide Dog Abby, Mario, Hope and Ollie,  Nurse Sue, Aman and Guide Dog Robin pose near the waterfront at CNIB Lake Joe.]

As usual we met some amazing new people and reconnected with friends made last year who were there this year, too! It helped enormously to know that Nurse Sue, RN and two student nurses from University of Toronto were on site if needed and really allowed us to be comfortable with Ollie staying for the second week on his own.

[Photo Description: Liam and Ollie pale in a double kayak at Lake Joe while a lifeguard and Mario walk in the water nearby.]

We met a lovely family from St. Thomas (very close to Chatham-Kent where I am from originally) and ate our meals with them. The matriarch, Susan had begun to lose her sight 5 years ago and her family are incredibly supportive including her husband and daughter. Her grandson who was close in age to Ollie, comes each year with them and is very comfortable around blind and low vision people. He and Ollie were fast friends and did everything together that week. Susan was so patient and shared with Ollie quite a few tips about accessibility features on the iPhone.

[Photo Description: Ollie and Abby making sand castles on the beach at Lake Joe. Ollie is wearing his new full f face mask and snorkel combo.]

Abby also met a girl her age with sight loss from New Brunswick. It was a good opportunity for her to be reminded that sight loss can happen to anyone, doesn't change that people are people, and for her to be able to relate to it better. I think it's sometimes hard for her to separate Ollie's day-to-day blindness from the cancer as it's a constant reminder of the trauma for her. Spending time with Hailey made her mindful of all of the daily challenges that her brother still has to overcome to live normally.

The camp ended on Saturday morning and we drove the 15 minutes to our rented cottage. Ollie spent two days with us there before we dropped him off at camp again on the Monday and the rest of us stayed at the cottage until picking him up the following Saturday. I can't post too many photos as the teen won't allow it, but we had an amazing week at Healey Lake Lodge & Market.

[Photo Description: Mario, Ollie, Abby and Dawn eat lunch on the deck at Healey Lake Lodge and Market.]

Staying nearby saved us the 5 hour drive there and back again or putting him on a shuttle bus without us. Honestly as stable as he is, we were not ready to leave him so far away without us, as the omni-present fear remains after almost losing him several times during treatment. So being 15 minutes away gave us comfort that we could be there in moments if needed and allowed us to have some dedicated time relaxing with Abby.

[Photo Description: Mario and Ollie in the water near the floating swim mat at Healey Lake Lodge. Both are wearing lifejackets and Ollie is wearing his new mask and snorkel combo.]

Ollie spent most of his time at the cottage in the water. With a sandy beach, shallow water and an exciting new mask/snorkels combo he was thrilled. 

[Photo Description: Ollie and Mario ride the golf cart near the docks at Healey Lake Lodge.] 

He also got to drive the golf cart as the the kind owners knew he was blind, but wanted him to have fun with daddy's help. The video I took of it features Ollie laughing hysterically and yelling "Woohoo!" as he drove down the lane.

[Photo Description: Mario and Ollie under a tent at dusk at the ice hockey table.]

He also spent a lot of time playing table ice hockey (he now wants one for his clubhouse!). Like air hockey, but the table actually has an ice surface, score board, etc. 

The owners Nadia and Fred were incredibly personable and kind and asked me how Ollie went blind. Poor Fred looked like I punched him in the gut when I told them that Ollie had cancer and the lymphoma damaged his optic nerves and took his sight. I reassured them that he was doing great today thanks to a stem cell transplant with Abby's cells and they both marveled at how happy and positive both of them appeared after everything they'd been through. Mario and Abby hate to talk to people about this stuff because they always feel like they have to comfort others after their reactions. I am totally honest and agree with people that yes, it was the hardest thing we've ever done, but also rejoice in telling them how great he and all of us are today. I don't want to make anyone feel bad with our story, but I've also learned the importance of people learning how to look those who have been through trauma in the eyes and acknowledge their pain. I do it for others who have had tragedy in their lives and particularly now that we've been through so much I understand how critical it is to let people feel empathy. It's what our world needs more of right now and it often seems that many are incapable of it in this ongoing pandemic. 

[Photo Description: Dawn takes a selfie during a campfire with Abby and Mario, while Abby eats a s'more.]

Abby enjoyed being an only child for a week! 😜 She laughs and dances more in the last few months than we've seen in 3 years and this was even more obvious at the cottage where she was carefree and happy. I'd worried that she'd be bored to tears with just us, but she spent some time online with friends and quite a bit of time in and on the water with us during the week.

[Photo description: Mario fishes off of the dock on Healey Lake.]

Mario had his favourite kind of vacation where nothing was scheduled and everything was spontaneous. He fished a lot.

[Photo Description: Dawn takes a selfie of her and Mario in kayaks on Healey Lake.]

Because Abby is a teen now and still wanted a bit of her own space we were able to get out on the water without her quite a bit to kayak and canoe. It was really the first time we've spent out alone since Ollie got sick. Literally the last time we really had time away from them was the weekend before Ollie was diagnosed in November 2019 when we went to a concert for Mario's birthday. 

[Photo Description: Abby, Hope and Mario have their backs to the camera as they walk into the Rosseau Market.]

We also poked around the local towns and attractions a few of the days we were at the cottage. 

[Photo Description: Ollie wears sunglasses and holds his mobility cane while leaning down and giving two thumbs up. Mason sits in the boardwalk and hugs Hope to him between them.]

Ollie had a good week at camp without us, although he did call us almost every day with the help of others with cell phones. It made me laugh when one day he called to ask me to text his friend the links to his book and his pizza so that he could prove to everyone how famous he was! 😜

[Photo Description: Ezra, Ollie, Mason and Hope pose in the dining hall at CNIB Lake Joe. Mason hugs Hope. All are part of the CNIB Buddy Dog Program and were at camp the same week together for Youth Week.]

I went early on the last day so that he could introduce his new friends to his Hope. As usual she enchanted everyone and all of the kids were excited to meet her.

[Photo Description: Mario, Dawn, Ollie and Abby crouch close together while Ollie gets ready to bow out the two candles on his cake to celebrate the second anniversary of his stem cell transplant/Abby's Hero Day. Ollie is sticking his tongue out while everyone else beans with happiness.]

When we got home from our first two weeks from CNIB Lake Joe, it was time to celebrate Ollie's second re-birthday/Abby's Hero Day! We were grateful to share it with our good friends the Navas who had invited us to a celebration with them. It still shocks me that it's already been two years and he's so well.

[Photo Description: Dawn poses in front of a Canadian Blood Services banner while holding a sign that notes that this is her tenth donation for those like Ollie.]

I also marked the anniversary that week with my tenth blood donation through Canadian Blood Services with my trusty blood buddy M-F donating with me again! 

[Photo Description: Dawn takes a selfie after getting her fourth COVID  vaccine at the #Jabapalooza vaccine clinic held in the street in the Glebe neighborhood in Ottawa.]

I was grateful that the province finally opened up boosters for adults as it had been more than 7 months since my last. I went as soon as I could to get my fourth. This protects me and everyone around me from serious illness. Now hoping they open them up for kids before the next inevitable wave this fall when they're all back in school. 

[Photo Description: Ollie sits on a gurney at CHEO in the Medical Day Unit while getting bloodwork done for his 3 month checkup.]

Ollie had his three month checkup last month. His bloodwork was stable as usual except that a few of his liver levels have been a bit higher the last couple of times. So with this in mind and given the plan was always to take Ollie off of his miracle cancer inhibitor drug, Lorlatinib after two years post transplant, his oncology team felt we were ready to do so. This will finally tell us whether the transplant and extra insurance of this drug have truly been enough to keep his cancer away. Plus it allows us to give him the final four live vaccines (measles, mumps, rubella and varicella) that he couldn't get while still on the drug. He'll go for his first dose of these at the end of August. 

We're watching carefully for any signs of relapse and I'm breathing deep and praying often that he doesn't, but the dread is always there and history has shown us that he typically relapses in his central nervous system after 3 weeks off treatment. It's three weeks off of the drug today. We will scan in early October and re-do his Minimal Residual Disease (MRD) test to see if his MRD is still negative. We've agreed that if it is positive we'll not take any chances and immediately put Ollie back on the Lorlatinib.

Ironically it's also 1000 days since his diagnosis today. Now 1000 days is not a recognized milestone in treatment, but it strikes me that 1000 days ago when our lives completely changed, I was uncertain we'd make it to a hundred nevermind a thousand! It's unbelievable how fast time has gone since transplant.

[Photo Description: Ollie in the dugout with Hope before his weekly Beep Kickball game through the Miracle League of Ottawa.]

Ollie is playing Beep Kickball on Mondays this summer with the Miracle League of Ottawa at their amazing adapted sports and playground facility in Navan for special needs kids. I was going to write a separate blog post about this one, but I think CBC Radio with the help of Ollie and other kids he plays with covered it best here.

[Photo Description: A poster promoting the book signing for Ollie's Telescope last weekend. Ollie is shown smiling while signing a book in front of a backdrop of the cover of the book. Photos of the author and illustrator are also featured.]

Meeting Sam who wrote "Ollie's Telescope" and connecting with her and Kaitlyn, the illustrator has been such a blessing. Last weekend we had the opportunity to participate in a book signing at Chapter's in Kanata to help raise more money for oncology families like ours through the CHEO Foundation.  

Gamma and Bumpa came for the weekend for the book signing. We were also thrilled to see many old friends, several of Ollie's teachers (including his Vision Itinerant teacher, his first orientation and mobility consultant and his karate senseis), awesome people I volunteer with at the school board to advocate for special needs kids and even people I've met on social media who have followed Ollie's journey from the beginning and been so supportive of our family. It was a beautiful afternoon and my heart was so full with how much we continue to be supported by our community.

[Photo Description: Ollie sits holding a book at a table promoting the CHEO Foundation and the book "Ollie's Telescope" while author Samantha Smadella and Illustrator Kaitlyn Blanchard stand behind the table beside him.]

I also got the opportunity to be interviewed by the lovely and kind Patricia Boal at CTV News/CFRA News radio about the book during her "Ottawa At Work" show after the book signing. Ollie opted out for once to spend more time with Gamma and Bumps while they were here. 

In between weeks of CNIB Lake Joe camp, Ollie also attended a couple of local outdoor day camps that have a  inclusion program where special needs kids get a one on one counselor. For Lego camp he had both a CHEO oncology friend and a vision itinerant program friend in the camp with him, too!

[Photo Description: CNIB Buddy Dogs Hope and Ray, who are wearing their vests and haltys and are actually siblings, rest under the dining table during a meal during Buddy Dog Camp.]

This past week Ollie, Hope and I were back at CNIB Lake Joe for the Buddy Dog Camp. It was inspired by Ollie, Hope and their friend Mason who were all part of the Buddy Dog Program and met each other and the Executive Director of CNIB Lake Joe Monique Pilkington at a holiday week at camp last year. All Ontario Buddy Dog duos and a parent for each were invited, as were those from Ontario on the waiting list for a Buddy Dog. One of Ollie's friends from his Vision Itinerant program also just got a Buddy Dog recently and was there, too so it was an especially fun week for Ollie!

Ollie was particularly psyched to meet Hope's brother Ray who was almost placed with us originally before it was decided that Hope was made for him. Ray's kid is Phoebe who is super sweet and her mom Aubray is awesome, too. She jokingly called the kids "Uncle Ollie" and "Aunt Phoebe" all week and we decided we are family thanks to Ray and Hope. 

[Photo description: Ollie walks Guide Dog in Training Riley with the harness and no cane for the first time with the help of CNIB Guide Dogs Trainer Shawna. The kids all got the chance to try it and all were then super psyched about one day getting their own official Guide Dogs.]

The camp was packed with the usual camp activities and Buddy Dog training sessions so was a very busy 4 days. It was great to meet so many people in person with whom I have interacted online in our Buddy Dog and CNIB parent groups.  

[Photo description: Ollie and Dawn talk to Anykah and her mom about Ollie's medical complexities and how he came to get Hope. Anykah is on the waitlist for her own Buddy Dog and Hope was so incredibly gentle with her. Photo courtesy of Miriam Mas.]

I think my favourite moments at camp weren't even about Ollie as we've had so many incredible moments at Lake Joe already this summer and so many memorable times with Hope in the past 17 months. My favourites were watching the kids on the waitlist (none of whom had ever been to CNIB Lake Joe before this either) interact with the dogs and the other kids. It's like that Robin Williams movie, "Awakenings" in some respects. Like all of a sudden these people who seemed lost are awakened to the incredible little blessings that we often take for granted every day. That they finally seem to belong because they are awakened together. Talking to the parents of these kids reaffirmed that it really was the first time they'd ever seen their kids seem completely at ease with other children and be confident in their abilities as opposed to hesitant to show their disabilities. It's exactly how I felt last year watching Ollie there for the first time...that he was finally with people who completely got him and what he lives with daily. 

[Photo description: Ollie feels Carla, the CNIB Guide Dog of CNIB Guide Dogs Executive Director Diane Bergeron, as CNIB Guide Dog Trainer Shawna looks on. Photo courtesy of Miriam Mas.]

We are very lucky that our community has embraced Ollie and included him since he went blind as we've heard so many heartbreaking stories of kids that are ostracized. I want Ollie and all blind and low vision kids to grow up feeling empowered, included and accepted. 

This is why I continue to do the advocacy for blind and low vision kids, recently joining the Board for Ontario Parents of Visually Impaired Children (OPVIC), whom I also represent on the Ottawa Catholic School Board's Special Education Advisory Committee (SEAC). We also do everything we can to support the work of the CNIB. 

[Photo description: Celebrity and CNIB Ambassador Joan Kelley Walker bends down to meet Hope as Dawn and Ollie look on. Dawn and Ollie are wearing yellow CNIB Lake Joe shirts and Hope is wearing her CNIB Buddy Dog vest.

Photo courtesy of CNIB staff.]

So Ollie, Hope and I were thrilled to be asked to stay an extra day to be CNIB Ambassadors for the CNIB Lake Joe Dock to Dock fundraiser this year. Our role was easy and fun - we just got to talk to celebrities and donors about how awesome the camp and Buddy Dog programs are. Ollie did a terrific job and Hope was fantastic, too. 

[Photo description: A screen capture of a tweet sent by Sportscaster Rod Black after meeting Ollie, Hope and I before the CNIB Lake Joe Dock to Dock Fundraiser.]

Meeting Rod Black was fun and he was excited to hear about Ollie trying various sports since losing his vision, but really impressed by his skateboarding. We were with Rod and Monique, so Ollie  used his influence wisely and planted seeds that CNIB Lake Joe needs a skate park next! 😜 Not so farfetched as they are raising money for a capital campaign to build a gym there and it could easily be a portable build where they put them out when they need them and store them when they don't like they do here in Ottawa at Landsdowne Park. We'll keep you posted! 😜

[Photo description: Ollie clowns around the morning of the event while holding a giant blank CNIB Lake Joe cheque as Hope sits at his feet.]

They're fundraising at Dock to Dock to support a national Buddy Dog Camp next year to bring in kids from all over the country and for a new boat for water skiing, tubing, etc. as the old one has been broken this year. They're just a bit over $5,000 short of their goal, so if you're able, please consider making a donation here.

It was a great day and we were proud to play a small part in it and to be able to give back in this small way.

The next couple of weeks we have a few more day camps (Scootering and Road Hockey) and then we'll be readying for another year of school! 

On this one thousandth day after diagnosis we remain so grateful to all of the people and organizations that have gotten us this far. We are blessed beyond measure and will keep doing everything we can to pay it forward for the next thousand days! Please send prayers that Ollie remains in remission without his miracle drug and that his wellness continues.