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"]

3rd Re-Birthday/Hero Day - A Love Letter to Sick Kids and CHEO

[Photo Description: A split image. On the left is a photo of mom Dawn with eyes closed while lying with Ollie, cradling him from behind as he slept in his hospital bed at Sick Kids Hospital in the Oncology ward in April 2020. It had just been confirmed that Ollie had relapsed in his central nervous system a second time while readying to go to transplant. On the right side, in April 2023 Ollie stands on the stairs at home in Ottawa with one arm in the banister and the other around Dawn who has her arms around him. Both are smiling and healthy.]

There are many kinds of love. The first love one has for one's parents or whoever nurtured you from birth. Some are lucky enough to have the love of siblings. Others simply the love of extended family. Love for friends, especially those who share your history and/or hard times. Romantic love for your partner made even bigger if you become parents together. Love for your children, whether born to you or gifted another way. 

But over the past 1337 days since my child was diagnosed with a critical illness that left me contemplating a possible life without him and ultimately getting to keep him, I have come to understand that there is also a special love that you have for the medical team that saves your child.

[Photo Description: Ollie sleeping after receiving the Benadryl before his stem cell transplant, while a Sick Kids nurse in PPE prepares to start the transfusion of Abby's stem cells.]

And so I am writing this love letter to my son's medical teams at Sick Kids Hospital and CHEO on this, Ollie's third re-birthday and our daughter Abby's 3rd Hero Day. Three years ago when then 8 year old Ollie (who had gone blind during his first of two relapses of his Anaplastic Large Cell Lymphoma ALK+) finally got his sister's half match stem cells at Sick Kids Hospital after a very intense and bumpy cancer journey, we breathed a sigh of relief, but knew that the hard work of recovery and survival was just beginning and there were no guarantees that it would work. 

[Photo Description: a split screen image of a video chat that we had with Abby while the transplant was started. Given out was early pandemic she was not allowed to be there in person even though she was the donor, so this is how we made her part of the momentous occasion. The top image shows Abby smiling as we show her the bottom image, which is the bag of her incredible stem cells hung with other bags of fluid and medication to be administered.]

To recap, it was just months after the COVID-19 pandemic had started. We'd arrived at Sick Kids from CHEO the first time for stem cell transplant in the second week of the very first lockdown after 6 intense months of cancer and relapse treatment at CHEO. Because of the pandemic, planes were being grounded, so his then 11 year old sister suddenly became his donor. Her cells were harvested at Sick Kids on March 31, 2020 and just 8 days later he relapsed in his central nervous system a second time. Unfortunately this was the week before he was supposed to start his total body radiation. We stayed in Toronto for 5 weeks after this to try a cancer inhibitor drug to no avail. 

[Photo Description: Abby watches as her stem cells collect in a bag hung on the Apheresis machine in the Dialysis Unit at Sick Kids Hospital on March 31st, 2020. The lines running her blood through the machine to strip out her stem cells can be seen beside her.]

After consulting with our CHEO Oncology team we opted to go back to Ottawa to try brain and spine radiation (thank you to the Ottawa Cancer Centre Radiology team at the Ottawa Hospital) combined with a brand new TKI obtained under compassionate grounds.  

[Photo Description: Members of the radiation team at The Ottawa Hospital put Ollie's radiation mask on him while he lies on the table. The team had his mask decorated with the cartoon character Johnny Test, which was his favourite. This radiation mask now hangs proudly like a trophy head in his epic playroom.]

To our delight and to the shock of his transplant team, this back pocket plan (designed by his CHEO team after his first CNS relapse) worked! By the end of June 2020 he was back in remission and 6 days later we were back at Sick Kids to ready for a second attempt at a transplant. 

Total Body Irradiation (TBI) at Princess Margaret was intense, but went well and we are grateful to the team there for their patience and help. 

To our shock, transplant went very smooth (a far cry from our very bumpy cancer treatments before) despite the added stress and fear of doing it during the first months of pandemic. Chimerism (which measures the number of donor cells present in the recipient) was 100% from the first test and has remained so the entire three years since. Our cheeky daughter promised us her cells would be overachievers and they certainly were!

[Photo Description: Abby, Mario, and Dawn surround Ollie in his wheelchair in the Atrium near the elevators on the 8th Floor at Sick Kids on discharge day +38. All are wearing masks and looking jubilant.]

Ollie was so well that after being discharged on +38 after transplant, we only stayed nearby until +58 and then were sent back home to have CHEO do the post transplant care since. We are about to have our final of three years of regular bloodwork and checkups post transplant at CHEO in August and I am actually weepy at the thought that we'll only see our oncology team once a year after this, despite how grateful I am to be at this point.

He's now fully re-vaccinated, breezed through COVID-19 just two weeks after his third vaccine for it in March 2022, has been unbelievably well, stopped his Lorlatinib TKI a year ago this week, lost 26 pounds of the weight gain from the TKI, is mentally well thanks in large part to CHEO Oncology's Psychologist and Social Worker, and remains in remission as confirmed by scans last month. 

Even better, he's living his best life, continuing to take skateboarding lessons, earning his orange belt in karate this year through Kids Kicking Cancer Canada, playing with the Canadian Blind Hockey Association last winter, Beep Kickball in the spring and summer, and representing his elementary school (grade 5) on their floor hockey and track and field teams. 

[Photo Description: Ollie poses for a photo during hockey practice with the Canadian Blind Hockey Association/Ottawa 67s Blind Hockey team in February 2023.]

He also does an amazing job advocating for better childhood cancer and blindness care and awareness whenever he's asked. He was featured (skateboarding blind) in a national Canadian Cancer Society Palliative Care campaign in January and spoke to Parliamentarians on behalf of children with cancer at their Day on the Hill in April. He and his CNIB Buddy Dog Hope will also be featured in an episode of AMI-TV's Blind Trust: A Guide Dog's Journey on August 22, 2023.

He will also be speaking on behalf of Young SIOP and I on behalf of Childhood Cancer International in the session on patient-centred care at the upcoming SIOP Congress in Ottawa this October. So if you're there, come by and say hi! I am also thrilled to contribute to several childhood cancer advocacy activities, many within CHEO and perhaps most notably with the new Canadian Pediatric Cancer Consortium (CPCC) as one of the Persons With Lived Experience Co-Leads for the Education and Training Matrix. We never take for granted how very lucky we are to be here today and do our best to give back where we can.

[Photo Description: Ollie and Dawn pose in front of the Canadian Cancer Society backdrop on their Day on the Hill. Ollie looks very handsome in a white dress shirt with bow tie and black dress pants and holds his mobility cane and Mom's arm.]

This love letter is for each and every single person in hospital who helped my son to survive. No contribution was too small and we are grateful for all of them including, but not limited to (in completely random order):

- The ENT clinic at CHEO who helped us to get to the bottom of the bump on his neck and get to diagnosis in 28 days after trying to figure out with our pediatrician for 4 months what it really was;

- Our incredible team of Oncologists and transplant doctors, lead by Dr. Abbott, Dr. Alexander and Dr. Ali;

- The people who cleaned his rooms and kept them bacteria free (especially when he had no immune system after transplant and during the pandemic); 

- Health care aids who transported him safely to so many operating rooms, scans and tests, all while keeping him and mom calm and often while telling us great stories that distracted us during stressful times;

[Photo Description: The 4 North Oncology Team and fellow patients at CHEO cheer and celebrate as Ollie rings the last planned admission gong (after his first central nervous system relapse during front line treatment) with Mom and Dad supporting him as he stands without his wheelchair to do so.]

- The incredible nursing staff in the MDU (especially our nurse case manager, post bone marrow transplant nurse, POGO Interlink nurse, and Nurse Practitioner), 4 North, Surgical Day Unit and PICU at CHEO and the Sears Clinic and 8th Floor, especially BMT Unit at Sick Kids; 

[Photo Description: Nursing staff in the Sick Kids BMT Unit give Ollie a send off with cheers, music and pom poms while daddy pushes him in the wheelchair on +38 discharge day in August 2020.]

- Lab technicians, pathologists and researchers who did the many tests to arrive at a rare diagnosis, identify infections, and to help us monitor too many risks to count over the past three and a half years;

- Imaging technicians and radiologists, often who dealt with our urgencies and were called in the middle of the night to do scans when he was relapsing or had to deal with our intense "scanxiety";

[Photo Description: Ollie sits with his leg in a bone density scanner at CHEO while a technician sits at the computer beside him.]

- The CHEO Genetics team and those at PROFYLE for helping us to identify his specific mutation that lead to a targeted therapy that was obtained under compassionate grounds, and got him back into remission and on to transplant after his second relapse when it looked doubtful that anything would;

- Pharmacists who helped us to find the right cocktail for every situation, creative ways to get adult meds down his hesitant throat, and ensured that despite it all happening during a global pandemic across two cities, we never had to worry that the lifesaving drugs wouldn't be available to us;

- Palliative care at both hospitals and the PICU team at CHEO who taught us that they do so much more than pain management and calling them in does not mean end of life;

[Photo Description: Ollie sits in his wheelchair at CHEO while recovering from his first relapse and is surrounded by therapeutic clowns, who were causing mischief and giving out lollipops.]

- Psycho-social teams including child life specialists, social workers, psychologists, psychiatrists, therapeutic clowns, music therapists, art therapists, volunteers, etc. You brought fun and compassion to a very scary situation for us on a daily basis and I am certain we could not have walked away with any good memories of this period without you;

[Photo Description: Ollie strums a ukulele in his hospital bed while a Music Therapist at Sick Kids plays the xylophone in an isolation room while waiting to engraft during transplant.]

- The radiation teams at the Ottawa Hospital and Princess Margaret Hospital who worked together flawlessly to calibrate both brain and spine radiation and total body radiation within mere weeks of each other and made something so very scary almost easy for us;

[Photo Description: Princess Margaret Hospital radiation team prepares Ollie for total body radiation, sticking a device to his back to measure the exact amount of radiation being delivered.]

- Other "ologists" and specialists that treated his specific relapses and side effects including neurologists, endocrinologists,  cardiologists, ophthalmologists, occupational therapists, physiotherapists, respiratory therapists, bone specialists, auditory specialists, retina specialist, dental clinic, etc.

[Photo Description: Ollie prepares to have a pulmonary function test in February 2021 at CHEO. The respiratory therapist in PPE with his back to the camera is a childhood cancer survivor himself.]

- ER staff at both hospitals - when you are a cancer family you are bound to spend a lot of time in emergency and we are grateful for your efforts to minimize our wait to be unexpectedly admitted when needed;

- The Vein Access Teams (VAT) in both hospitals who quickly became among the most important people on our team;

- All others in senior leadership, administration and services - e.g. scheduling, admitting, cafeteria, laundry, maintenance, technology, parking, HR, finance, fundraising, communications, etc. I am certain you rarely get thanked by families, but all of you keep the hospital running seamlessly and we know during the pandemic this took extraordinary effort;

-  The Apheresis/Dialysis Unit for helping us so much on stem cell collection day and showing us what a fun place Sick Kids could be with your Tick Tock Dancing to entertain your young dialysis patients;

- Food services and restaurant/cafe staff who stayed open and served us during the early days of COVID despite the fear and unknowns;

- Anyone and everyone else I have forgotten to mention by clinic unit or specialty here. It literally took an army and my poor brain is still reeling at the magnitude of what you all did for us.

Gratefully we remember all of you and your contributions on this day and every time we look at Ollie, as he is living proof that an army working together with science and hope makes miracles together. We will never be able to adequately thank you all for saving his life, so we will keep doing whatever we can to help you to at least save others, too, through our advocacy and fundraising efforts. Know that we will never forget the thousands of kindnesses that you sent our way.

With love and gratitude always,

The Acosta-Pickering Family:

Dawn, Mario, Abby and Ollie

P.S. - Please share this with any who may have helped us at all four hospitals or who just need to be reminded of how important their work really is today and everyday.

A big, beautiful, blind life (with lots of hockey!)

Wow! We haven't written anything since early January, so we're happy to tell you that Ollie is still doing great and keeping busy! In addition to his usual weekly activities of skateboarding and Kids Kicking Cancer Canada's Heroes' Circle martial Arts program, the last few months have been filled with the Ottawa 67s Blind Hockey/Canadian Blind Hockey Association season, and the 6th annual (third year involved for us and it was the most successful yet - final amount raised to be announced soon!) Snow Angels for CHEO campaign with Ollie's class participating and doing  special group snow angels to help!

We also participated in a bunch of special events and activities such as: 

- Ollie's class went cross country skiing; 

- Attending an Ottawa Senators game against Colorado in the Wade's World Suite with friends thanks in part to the CHEO Foundation; 

- Presenting the CNIB Buddy Dog program at a Scouts Canada Cubs meeting;

- The Canadian Cancer Society's Palliative Care campaign commercial ran on networks and streaming services across the country  (Ollie loved the excited messages from people across the country saying they'd seen him on TV!) and Ollie's photo was once again on the front page of the Ottawa Citizen from our interview with them in support of the campaign; and

- We filmed an episode of an upcoming AMI-TV 6-part documentary series on Guide Dogs to represent the CNIB Buddy Dog.

Funny...when I write it all down I realize that winter really has been busy! I wondered why I couldn't find time to update the blog! 😂 And I am only doing it now because I happen to have down time on the way back from Toronto where we had the latest event...the 2023 Canadian National Blind Hockey Tournament! What an incredible weekend! 

[Photo description: Ollie models his new Canadian Blind Hockey shirt while getting ready for the Multisports Day of the 2023 Canadian National Blind Hockey Tournament. CNIB Buddy Dog Hope lies in the floor beside him wearing her best and halty while Mario peeks around from behind Ollie.]

The tournament was the biggest ever held by the Canadian Blind Hockey Association and was an invitational, so a handful of kids from Ollie's Ottawa team went. The event took place at the old Maple Leaf Gardens/current Mattamy Athletic Centre for Toronto Metropolitan University (formerly known as Ryerson University), so Mario was almost as psyched as Ollie, telling Ollie that he was having an experience in Toronto that his daddy had never had, skating on "hallowed ground". It is also located right downtown, so we stayed just two blocks from where we lived near Sick Kids Hospital for 5 months during Ollie's stem cell transplant in 2020.

[Photo description: Mario is driving while Dawn takes a family selfie on the way to Toronto for the hockey tournament. A smiling Ollie and Abby (with an Emoji head - she asked that her face not be shown as she was just waking up) were in the back.]

We took the whole family, having talked about whether it might be triggering to be in the same neighbourhood filled with so many of our hardest memories, and deciding everyone was okay and could handle it. I don't think it was a coincidence that we also traveled there on the exact day that three years before we'd traveled to the same neighbourhood for our first (false) attempt at transplant in the first week of the first pandemic lockdown. My how far we've come mentally and physically to get here now!

[Photo description: The family driving to Toronto for Ollie's first (false) attempt at transplant in March 2020. The van was packed full and Ollie needed morphine to manage the pain of sitting after being bedridden for the 2 months since he'd relapsed in his central nervous system and went blind.]

All weekend long I felt emotional, grateful, nostalgic...fighting tears - both good and bad. As we walked the same streets and took Hope to the same park that I'd once screamed and cried in when he'd relapsed there the second time and we'd been told maybe we shouldn't treat him and cause him more pain or sudden death. Thank GOD we didn't accept that. As I sat watching him playing hockey and meeting old and new friends all weekend with such incredible joy, I was struck again and again with how lucky and blessed we are. How much I could not have imagined being in this position three years before when everything seemed desperate and near impossible. We hear often what an inspirational story his is and I really felt that myself all weekend.

[Photo description: Ollie tries the most challenging rock wall with various angles at the bottom of the wall during Multisports Day.]

The weekend started with a Multisports Day sponsored by the Government of Canada - Sport Canada. Here kids with vision loss got to try rock climbing, ball hockey, soccer, tennis, basketball, and an obstacle course. In typical Ollie fashion, having done rock climbing before at CNIB Lake Joe and being among the biggest kids, he started on the hardest rock wall. It had a strange angle that made it the most challenging.wall. Ollie first attempted it on his own and was struggling. I went over to take a pic and asked if he'd prefer to start with an easier wall and when he said yes, we asked and were told he'd have to wait a few minutes for one to be available. I let him know he'd need to wait and turned away to talk to another parent. Moments later when I turned back to Ollie there he was high on the hardest wall having quietly decided not to let it best him.

[Photo description: Ollie on the hardest rock wall nearly at the top on attempt #2. The kid just won't give up. Thank God!]

He quickly finished his climb to the top and promptly repelled down and dramatically collapsed. When we recovered, he told me his arms felt like rubber. I asked if he wanted a break and then to do an easier wall. He told me when you have done the hardest things you already know you can do the easier stuff. What a kid! 

[Photo description: Ollie dramatically lies on the floor on his back after his challenging climb, while still connected to the rope while Mario and an instructor lean over to talk to him.]

The actual hockey tournament began  Friday with various divisions playing including the Children and Youth Divisions where most of the people we knew were playing. There was also a three game series of the National Team Canada vs. USA Men's Hockey Teams battling for the cup (Canada won the series).

[Photo description: Ollie and the Children's yellow/67s Team on the bench with their coach for the weekend]

Ollie was #55 (for staying alive we joked) yellow/67s Team in the Children's Division and while it was clear that his full blindness made his participation more challenging than for those with low vision, he had a blast, did all he could to contribute and was happiest playing in net where he could easily hear the puck coming at him. His Ottawa coaches were there, too and commented that maybe next year we should start training him to be a real goalie. Normally for the Children's Division they don't dress a goalie, but they do for the youth division. The hockey was fun to watch and the kids worked hard (they played one game each of the 3 days of the tournament) and had a blast off the ice, too. 

[Photo description: Ollie #55 yellow talks to the ref at centre ice before a play begins with players from both teams gathering for the puck drop.]

I think my two favourite moments of the tournament were in the last game at the end. The first was when the buzzer went signaling the end of the game, which Ollie's team won. While I knew winning would make him and his friends feel great, that's not what made it best. It was that his Ottawa friend Jack immediately skated over to the net where Ollie was playing and grabbed Ollie in the biggest hug!

[Photo description: Jack hugs Ollie in net after their big win. Photo courtesy of Jack's mom, Allysun.]

Then Jack let Ollie grab his back while he lead Ollie back to the bench. In blind hockey typically the players with more sight use a hockey stick to tow those with no vision (often the goalies) back to the bench. No man left behind.

[Photo description: Teammate and friend Jack leads Ollie back from the net to the bench after winning their team's final game. Photo courtesy of Jack's mom, Allysun.]

The second was during the medal presentation. Really they were all getting participation medals no matter who won, but my pent up emotions started leaking at how proud they all were, how much they'd all worked so hard and improved this year and how Ollie cheered as they announced all of his friends from his tournament team and his Ottawa friends on the other team, too.

[Photo description: Ollie puts his gloved fist in the air, cheering for his  friends as they received their end of tournament medals.]

The CNIB was a sponsor of the tournament so we also got to finally meet in person staff from the Toronto office whom we have met many times online and there were lots of awesome cross-over situations like seeing CNIB Lake Joe staff who are university students in Toronto and were volunteering, and other CNIB Guide Dogs Buddy Dog program families that we've either met at last summer's Ontario Buddy Dog Camp at CNIB Lake Joe or we've met from other parts of the country in the online CNIB Buddy Dog group. It was so fun to have Hope there who was so well behaved all weekend and to meet a few of the other new Buddy Dogs like Terry and Georgie, too! 

[Photo description: CNIB Buddy Dog Hope on the right with Ollie and Mario meets Buddy Dog Terry with Gabriel's mom, Melissa at the Parasports Day.]

My final favourite moment was Ollie meeting Curtis Ruttle today who played a big role in getting Ollie back to skateboarding after he went blind. When Ollie went blind during cancer and was having his stem cell transplant at Sick Kids Hospital (just down the street from the former Maple Leaf Gardens/now Mattamy Athletic Centre where the tournament was), he asked if he'd ever be able to skateboard again and mom told him she didn't know, but if there was a way we'd find it and try. 

[Photo description: Curtis Ruttle and Ollie meeting for the first time at the tournament in the Mattamy Athletic Centre.]

About two years ago and almost a year after transplant when Ollie was fully recovered,  we saw a social media posting from CNIB highlighting the ALT Route Projects where blind and low vision youth in Calgary were skateboarding. Mindful of this, mom was inspired to contact The Yard Ottawa about Ollie's wish to skateboard blind. Their incredible response was, "Let's get Ollie back in the skate park!", and they connected us with his new instructor, Jordan Wells.

Jordan and mom contacted The ALT Route Projects and connected with Curtis Ruttle who was then the passionate 16 year old who wrote the grant proposals, did the promotions and was the energy behind the project. He was super helpful in getting Ollie started with blind skateboarding safely. 

Today Curtis and Ollie got to finally meet in person at the tournament and talk about exciting ideas to expand the program in Ottawa and to other centres across the country! 

[Photo description: Ollie wearing his medal and sitting in the dressing room after the last game while he takes off his gloves.]

Ollie told me this morning how sad he was to be leaving and that the tournament was over. He met so many awesome new friends from across the country and connected with friends made virtually and in person through CNIB the past two years. We talked to so many parents and staff about the incredible CNIB Buddy Dog program, talked about ways to make programs and services even better for children and youth with vision loss in this country. 

I left feeling grateful and inspired to keep helping Ollie to live his best life. This is the life that I predicted he'd have but couldn't truly fully visualize after he went bind and we told the doctors when they didn't know if it was temporary or permanent that if they just saved his life we'd give him a big, full and beautiful one - no matter what. Thank you to all who help us to give him this incredible life.

[Photo description: Ollie receiving an emergency blood transfusion at Sick Kids Hospital on this very day three years ago, March 26, 2020. So grateful to be where we are today.]

2022 - A Year of Giving, Growth, and Gratitude

Happy New Year! I actually started writing this update weeks ago and then suddenly Christmas activities took over and I'm just now able to get back to it! It's been a lovely and quiet Christmas the past week and allowed for lots of rest and reflection on 2022.

Much like all of 2022, the past two months since I last updated the blog have been so busy! So much so that I didn't realize how much time has passed! Happy to report that other than minor colds and a sinus infection for me, we've all been well and normalcy is wonderful.

[Photo Description: Ollie on skates and wearing a hockey helmet and Ottawa 67s jersey holds the hands of his sighted guide Emily on his first day of Ottawa 67s Blind Hockey/Canadian Blind Hockey Association league.]

This fall Ollie started hockey with the Ottawa 67s/Canadian Blind Hockey Association. I wasn't sure how he'd like it this year even though he was sure he wanted to try it. Last year the only time we got him up on skates he was less than thrilled and mad at me for making him shuffle around the whole rink at least once before taking the skates off. Maybe it's that a bunch of his sighted buddies at school play hockey in leagues and talk about it all the time, or that some of his friends with vision loss have been raving about the program all summer when they played Beep Kickball together and they encouraged him to come out and try it this fall. Either way he couldn't wait for the season to start.

[Photo Description: In his second week, Ollie stands on the ice on skates wearing his Ottawa 67s jersey and a hockey helmet, holding a hockey stick with his sighted guide Emily (from Ottawa's Able2) giving him instruction.]

The first practice session was to show the newbies basics and how to skate. Ollie had been a decent skater before and had even taken lessons when he was sighted. Ironically one of the last activities that he did sighted was to go skating at one of the local park rinks with me one day in January 2020 between rounds of chemo when he was feeling well enough and cooped up. He was delighted that day to push the shovel around and clear the snow, then play a bit of hockey while we had the rink to ourselves because it was a weekday. Everyone else was busy with their regular work and school lives while we were at a loss for something to do when there were no medical appointments.

[Photo Description: Ollie stands on the ice wearing and a hockey helmet at Fisher Park, holding a hockey stick in January 2020 just after round 2 of chemo and before relapsing and going blind less than 2 weeks later.]

In October, during his first week of blind hockey, Ollie noted that the new kids suffered through the basics of learning to play with the help of one-on-one sighted guides, while those who had done it before got to play actual hockey at the other end of the arena with a couple of the coaches. By week two he was determined he'd quickly join the returning kids playing hockey. Each of the four weeks since Ollie has progressed with surprising speed and many of the other parents have commented on it and been amused by how determined he is to get better at it. We're not that surprised since we know very well how committed this kid is to getting better in every way. 

It helps that the coaches and sighted guides are all incredibly dedicated and talented volunteers. The coordinators of the program, Wendy and Rob are the parents of the Executive Director of the Canadian Blind Hockey Association and do this because of their son's contagious passion for offering blind hockey across the country. The skating coach, Shelley is one of the most elite figure skating coaches in Canada and has been the Skating Development Consultant for the Ottawa Senators for more than a handful of years! Coach JoJo works with the Ottawa 67s and sighted guides like Emily (who is the Executive Director of Able2 that supported the Beep Kickball that Ollie played with the Miracle League of Ottawa last summer) come out to help each week, plus lend equipment when needed. 

[Photo Description: Ollie tries on his new to him hockey equipment courtesy of the Wright Family with his Maple Leafs jersey to tease them (they're Habs fans! 😆)].

Since Ollie had never played hockey, we were uncertain if he'd like it, so appreciated that he could try it for a few weeks without us having to buy any equipment (other than providing his skates and helmet). Plus, they often get donations of gently used equipment so that families don't have to spend a lot to get started. When we saw that Ollie was clearly psyched to do it this year, our dear friends the Wright family gave Ollie everything he needed to get started as their two boys play hockey and had outgrown a bunch of stuff they were planning on donating somewhere anyways! This allows us to pay for just his ice time for the season and we'll make a donation to the Canadian Blind Hockey Association in 2023 to pay it forward so other visually impaired kids can play at low or no cost, too.

[Photo Description: Dawn, Ollie and Mario sitting at the Ottawa Senators Hockey Fights Cancer game while Ollie shows off his new purple and white jersey. All three are masked.]

His new Ottawa 67s Blind Hockey jersey has been ordered (the first they gave him was too small once he got all the equipment on! 😆). So in the meantime, he happily wears the "real" Ottawa 67s jersey that the team gave him last spring to replace the original one that they gave him (he outgrew the first one) when Gabriel Pizza made the trip to Toronto to deliver the famous Olive pizzas (later named the Ollie's Pizza on his honour and still on their menu). Or his latest acquisition, which is the Hockey Fights Cancer Ottawa Senators jersey, which he got at their Hockey Fights Cancer game that we attended with Kids Kicking Cancer last month. He joked that it's the only way we'd get him into a Sens jersey! 😆

[Photo Description: Ollie, wearing his hockey gear and his Hockey Fights Cancer jersey works on stick handling with Coach JoJo during a hockey practice last month.]

On October 29th we were excited to be included in the Ottawa REDBLACKS CFL game when Gabriel Pizza asked Ollie to do the coin toss (as the namesake of their Ollie's Pizza) with their founder, Mr. George Hanna. The whole family was included in the festivities, with Ollie doing the coin toss with the players, Mr. Hanna and the Gabriel Pizza mascot, Chef Gabe. 

[Photo Description: Ollie stands on the sidelines of the Ottawa REDBLACKS CFL game, arm in arm with Gabriel Pizza's mascot Chef Gabe, while holding his mobility cane.]

Game day was super exciting, and the whole family (including Hope) got to go down to the field level for the coin toss. I accompanied Ollie onto the sidelines and he was almost vibrating with energy as we talked to the Hanna Family and the Ottawa REDBLACKS staff while we waited for the big moment. From fireworks as the players came onto the field to the cheer team, it was non-stop action with me trying to explain it all to Ollie quickly and accurately as he listened to it all happening rapidly.

[Photo Description: Ollie and Dawn on the sidelines with Chef Gabe, George Hanna and Rolla Hanna. Photo courtesy of Sharon Higgins from Gabriel Pizza.]

I guided him on to the field and stepped back while Ollie had his moment with the team. It happened pretty fast and Mr. Hanna did the actual coin toss while Ollie and mascot Chef Gabe stood nearby. On our way back to the sidelines I was delighted to see my old friend and former Ottawa Gee-Gees colleague/photographer Andre Ringuette of Freestyle Photography as he was shooting the game! He greeted us both (he's also a friend on Facebook and knows Ollie's story) and took an amazing shot of the two of us. 

When he sent it to me, he told me it was the "shot of the week" and I have to admit it's one of my favourite ever taken of the two of us. I love this shot because my friend who is an amazing photographer (he also shoots for the Ottawa Senators, has been part of the Canadian delegation to shoot several Olympic Games, is the official Canadian Tire Centre photographer and has photographed SO many famous music groups and artists, etc.) took it, but also because although Ollie has my arm and I am supposed to be guiding him, you can clearly see he is actually leading me boldly with his mobility cane and no fear. Much like he has throughout his cancer, stem cell transplant and transition to blindness journey. People think I am guiding him through it all, but he's really always been intuitively leading me to help him. 

[Photo Description: Ollie and Dawn walk off the field after the Ottawa REDBLACKS coin toss. The North side stands are behind them and although Ollie is holding Dawn's arm, he is clearly leading while walking slightly ahead of her and using his mobility cane. Photo credit to Andre Ringuette, Freestyle Photography.]

After the coin toss, the Hanna Family kindly invited us up to their suite to watch the game and eat with them. It was lovely to get to know Mr. George Hanna, his daughter Rolla (who also manages the Gabriel Pizza restaurant on Metcalfe in downtown Ottawa where I used to go for lunch pre-cancer and pre-COVID) and her teen son/his grandson Gabriel (born long AFTER the business was started) and we had a lot of fun, too! 

[Photo Description: White letters against the sloped green hill in the REDBLACKS end zone spell out, "OLLIEWOOD".]

A few days later a friend sent me a photo that he took at another event at Lansdowne the day after the game. In the end zone someone had put up letters against the sloped green hill that said, "OLLIEWOOD". We checked against photos from the game the day before and they hadn't been there then! We actually think it was put up for Athletico Ottawa player Ollie Bassett,  but this made Ollie laugh in delight to think that someone might have done this in homage to him! 😆

[Photo Description: Ollie sits on a gurney in CHEO's Medical Day Unit (MDU)  with Hope on Halloween. Ollie is wearing a jack-o-lantern shirt and a KN95 mask. Hope is wearing her CNIB Buddy Dog vest and holding a stuffed pumpkin that Ollie got as a gift in a loot bag and gave to her.]

On Halloween we started our day at CHEO for bloodwork, a check-up and his final re-vaccinations (Diptheria, Tuberculosis and Pertussis - ironically it was Tuberculosis that they were convinced he had before he was diagnosed with cancer, even though he'd been vaccinated for it) after transplant. Hope came with us again and made Ollie even calmer. At one point when Nurse Julie was trying to clean his arm to prepare for bloodwork, Hope kept trying to be helpful and comforting and lick him where Julie had already cleaned, so we had to hold her so we could do it without a contaminated field! 😆 

Later Dr. Brianna (who was also dressed up as a baseball player for Halloween) helped Ollie to find and listen to Hope's heartbeat with her stethoscope. Talk about full service at CHEO! 😆

[Photo Description: Ollie and Hope sit on the gurney in MDU and he listens to Hope's heartbeat on Dr. Brianna's stethoscope as she holds it in place.]

Ollie's scans when we last updated this blog had been clear, but we were still waiting on results from his minimal residual disease (MRD) test that we'd sent to Germany again to be part of a relapse study for Anaplastic Large Cell Lymphoma (ALCL). Thankfully shortly thereafter we got the call that the test was once again negative!  This was incredible news because it meant that we could keep him off of the Lorlatinib as the plan was always to re-start immediately if the test was positive and showed any sign of that cell still mutating and causing the cancer. 

[Photo Description: Hope licks Ollie as Nurse Julie begins to get him ready to have his bloodwork done in CHEO's MDU.] 

So the only ongoing issue besides the minor osteopenia in his lower back and hip (which his recent scans showed had actually improved again marginally), is his thyroid. Since September we've been playing with his dose of synthetic thyroid medicine to try to get to the right level. Every month he's had to go back for bloodwork to check the level again and each month it's still been too high, showing that he is now experiencing hyperthyroidism instead of the hypothyroidism he has had since transplant. 

Last month when they bumped him down for the third time to the lowest dose he's ever been on (50 mg), I asked the endocrinologist if it were possible that his thyroid is now actually functioning properly again and maybe he doesn't need the med anymore? I suggested perhaps the Lorlatinib that had been surpressing his immune system (as soon as we took him off his white blood cell count, red blood cell count, neutrophils, etc. shot up again, almost doubling even though his levels on Lorlatinib had been healthy/within normal ranges), has also been suppressing his thyroid function and now that he was no longer on the drug perhaps it was working again? She acknowledged that this was possible, but we'd still have to take the latest dose for a month and see what the bloodwork shows as it can take 4-6 weeks for the dose change to take effect. 

We'll go again this week to check, but his appetite is still very low even though the fatigue, sensitivity and outbursts have disappeared, and this makes me think we are still giving him too much med and he may not need it at all. We'll keep you posted, but my track record on predicting/analyzing this stuff has been pretty good so far.

[Photo Description: Dawn, Ollie and Hope on the CNIB Guide Dogs float for the 2022 Carleton Place Santa Parade.]

At the beginning of November, Ollie and I were invited to share his story and his transition to blindness with a university group called, Unite for Site thanks to his Kids Kicking Cancer Sensei Brian being part of the group that organizes it. It was my first time back on the University of Ottawa campus (other than at the arena where he now plays hockey, too!) in a long time and it was kind of fun to share more of my alma mater with my son. Hope came along too and the talk was well- received.

At the end of November we also once again participated in the Carleton Place Santa Parade on the CNIB Guide Dogs float. It was another beautiful night with great weather and not too cold! It was extra fun to have our friends Adam, his mom Lisa and his new Buddy Dog Henson there this year, in addition to our friends Connor, his CNIB Buddy Dog June and mom Julie. As always it was great to see the coordinator of the Buddy Dog program who gave us our Hope, Miriam. 

[Photo Description: A posting advertising Braille Night for Unite for Sight. The poster includes photos of someone reading Braille with their finger and a photo of Ollie holding up his Braille TacTiles to do math when he was in virtual school the year after transplant.]

In early December Unite for Site had us back to teach them about the basics of Braille. The event was held at the Ottawa Eye Institute just down the hall from Ollie's retina specialist's clinic and as all were welcome, we were delighted that friends Sam (who wrote the Ollie's Telescope book based on Ollie), her son Tobey, and Sensei Lyne and her husband, Luigi also came! We had a great time and Ollie was an incredibly funny and charismatic teacher. Sensei Lyne told me after that he IS teaching the world and since his vision itinerant teacher Dawne also tells me what an incredible teacher he is for the little ones, it seems maybe he is destined to be a teacher as he grows up, whether by profession or simply by passion. 

[Photo Description: Dawn and Ollie are pictured with the group that came to Braille Night behind a table with Braille materials on it. They were all excellent students!]

We recently got back our family photos that were taken during this year's #PhotosForPhoebe fundraiser for the Phoebe Rose Rocks Foundation who supported us during transplant and co-sponsored the genetic sequencing testing that helped to identify his miracle drug Lorlatinib. 

[Photo Description: Mario and Dawn hug Ollie and Abby between them in their 2022 family photos. Photo credit to Anne-Marie Bouchard.]

It was so nice to do the photos in a studio this year with photographer Anne-Marie Bouchard and to be able to meet Phoebe's mom, Jenny and her sister, Mae. As it turns out Abby knew Mae from school, but neither girl realized what they had in common beyond another friend who also volunteered to help that day. It's funny that I had also told Abby about another kid that goes to her school who had cancer (I sit on a committee with their dad) and it turns out she knew them, too and didn't realize what they had in common either. She seemed shocked that she now knew several others whose families have been affected by childhood cancer, too. The thing is cancer isolates you so much that while you're in it, you can't imagine that anyone else like you might be experiencing it, too, especially if you're a teen and think you're the only one suffering.

[Photo Description: Ollie bends down with his hands on Hope as she lies down in her halty and CNIB Buddy Dog vest. Photo credit to Anne-Marie Bouchard.]

In December Ollie and I were invited to be part of a commercial that the Canadian Cancer Society is putting together to promote the value of palliative care in hopes that the various provincial governments will increase their support across the country. We were the only pediatric cancer family to be involved and they wanted to highlight how our experience with palliative care helped Ollie to survive. This was easy because I am convinced that meeting with Sick Kids Hospital's Palliative Advanced Care Team (PACT) from the outset of his second attempt at transplant and working with them to ensure we had pain management, nutrition and psycho-social supports in place for the whole family during his transplant helped us all to get through it more easily than we expected to. Palliative isn't just about end of life care (although we have dear friends who have needed this and have seen through them the value of making children's passing as peaceful and comfortable as possible for the whole family) and we need to do more to make people understand all of it. 

[Photo Description: Ollie gets ready to do a drop-in into the bowl at The Yard during his skateboarding lesson with Jordan. The director of the Canadian Cancer Society commercial holds the camera, one of the production assistants is by his side and the boom mic can be seen in the shot.] 

So Ollie and I shot the commercial with the crew on December 8th beginning with our individual interviews at home, some b-roll of playing at home and then we took them to the Yard for Ollie's skateboarding lesson.

Ollie insisted on trying the five foot drop-in that he hadn't landed yet. He tried it twice while they are filming and took major wipe-outs, as my heart was pounding and I was holding myself back from taking him not to do it. Both Jordan and I told him he didn't have to for the camera and it didn't have to happen on that day. When we saw that he wouldn't give up, Jordan gave him a pep talk and I yelled, "I CAN DO IT! I CAN DO IT!", which is what we used to say over and over when he needed to convince himself that he could do the hardest things during cancer and stem cell transplant. He said a little prayer and told himself he could do it (he told me this later) and on the third try he nailed the drop-in with no hands and Jordan caught his hands as he descended into the bowl successfully without wiping out. 

[Photo Description: Just before successfully doing the drop-in, Ollie asks Jordan to hold his hand for a minute while he prepared mentally to do it. Jordan, as ever the best coach and teacher, didn't question it, just did what Ollie needed to feel ready.]

At the end they hugged so hard and the entire crew was wiping tears from their eyes. If they keep it in the commercial, it'll be interesting to see if others feel what a big deal it was for the blind ten year old cancer and stem cell transplant survivor to do this. I shared the story and the video on social media and there was a lot of fanfare including one of his personal heroes, pro blind skateboarder Justin Bishop sharing it on his Instagram story the next day. Ollie was very proud. 

The commercial was being shot with other adults across Canada and is expected to be released early in 2023. We'll keep you posted and share it when it is publicly available. We may just be a few seconds in it, but feel proud to be helping and I know that my grandparents (who were big Canadian Cancer Society supporters after the three times my grandpa had cancer) would be happy that we were doing what we could to help others to get better palliative care in future. 

[Photo Description: Ollie helps Mario to put the Christmas tree together.]

Ollie was sick for about 2 weeks with what we suspect was RSV, even though he still masks at school, as his school has had record absenteeism rates due to RSV and flu. As Ollie pointed out to us, kids were going to school sick (the principal corroborated at the Parent Council meeting that they were having to send a lot of sick kids home who were clearly sick before they got to school!) and he still had to take his mask off at lunch time to eat, so likely got sick that way. 

Ollie had his flu shot in October as did we all, and his most recent COVID booster in November and we tested for days when he got sick, so know it wasn't COVID, and no fever, nausea or vomiting, so not flu. Plus several of his teachers were out with RSV or it having developed into pneumonia over December. We kept him home over a week until the mucous stopped constantly making him miserable. 

Naturally that's how I got it on top of the sinus infection I'd been waiting for a virtual doctor's visit to address. I felt pretty rotten for about 6 days, but thankfully the doctor gave me antibiotics for the sinus infection, so when that cleared, the cold symptoms were much more manageable. Again, we stayed home and waited it out to ensure I was no longer contagious and actually felt human before venturing out again. It also meant we postponed some plans to see friends over the first days of the holidays until I was better after Christmas.

[Photo Description: Ollie stands slightly on tip-toe to put the star on the Christmas tree himself this year! He's getting so tall and already wears a men's size 10.5 shoe, so the bone specialist says he'll be tall despite radiation potentially compressing his spine.]

We actually had a quiet, but peaceful and happy Christmas. No family up and given I was sick and there was the crazy storm that happened the 22nd to 24th, glad all our loved ones were home safe and healthy, too. We saw a few dear friends in the days after Christmas for short visits when I was feeling better, but for the most part have just rested and recharged. It's been a really busy, but productive year.

Reflecting on all that we've accomplished, there's been so much personal growth and stability for all of us together and each of us individually. It's been the year we all finally got back to the "normal" of school and work and started to have social lives beyond social media or online chats again. 

On the cancer and blindness advocacy side, we have contributed to the following (many with Ollie being directly involved and others on my own based on his story) in 2022:

- 15 Research Studies related to Pediatric Cancer, COVID-19 in immuno-compromised families and Accessibility

- Member of 3 Parent Advisory Committees for Oncology/Lymphoma, and 2 Parent Advisory Committees and 1 Board of Directors for Blindness/Accessibility 

- Shot a commercial for cancer advocacy

- Had a book written about Ollie and a book signing that raised money for CHEO

- Held a Braille Night to teach people about Braille 

- Launched the CHEO Dream Home Lottery

- 11 media interviews 

- Wrote 11 blog posts and countless social media posts related to Ollie's status, cancer, it's side effects and blindness

- Made a handful of presentations on Ollie's story and lessons learned to various organizations as requested to raise awareness

- Participated in 6 fundraisers for the various charities who have helped us

- Donated blood 4 times (every 84 days as allowed)

So we're feeling pretty great about how we've paid it forward this year, recognizing that I didn't work at all the first three months, worked part time the second the months and full-time the last 6, so it's unlikely that we'd ever have this much time again to do so much!  We have a few new commitments lined up for 2023 including work to help the new Canadian Pediatric Cancer Consortium and Leukemia and Lymphoma of Canada to revamp their programs for children and youth, in addition to some of the ongoing advisory roles. 

People often ask me where I find the time or energy, but it is literally a labour of love, has helped me to heal and find meaning in the hardships that we endured, and frankly feeds my soul so much more than watching TV in my free time would! I plan to take it a bit easier in 2023 to see what else is possible for us, but Ollie and I agree that if we're asked to help and we feel we can, we will. We respect as well that Mario and Abby have needed to take a step back and do less this year so that they can move forward in their own ways, so we do it on our own these days. 

So 2022 was extraordinary in all the best ways for us and we hope and pray that 2023 will continue to be one of happiness, healing and health. Wishing all of you so much joy in 2023! Thanks for sticking with us.