2023: A Year of Advocacy and Constancy

In 46 BC (that's Before Christ, not before cancer) Julius Caesar redesigned the annual calendar to re-align it with the sun, after consultations with astronomers and mathematicians. He decided that January 1st would be the first day of the year in homage to the month’s namesake Janus. Janus was the Roman god of beginnings, whose two faces allowed him to look back into the past and forward into the future. This explains why most of us generally feel the need to look back on New Year's to see where we've come from, and forward toward where we hope the future will take us. 

In our family,  the look back has become easier over the last couple of years, because as we have gotten farther away from cancer and stem cell transplant, it's less painful to look back.  The looking forward is still challenging,  though, because through cancer we've learned that you have no real idea of what the future holds for you or how your life can completely change in a moment. So you tend not to think too far in advance, and you learn to simply live day by day during cancer,  grateful for the good days.  Thankfully our 2023 was a great one!

Our Year in Advocacy

I often get asked how we have the time and energy to do so much advocacy on top of work and school,  and the answer is that it is easy to do something that is so important and makes all of the agony that we had to go through meaningful. Ollie always has the choice to decide whether or not we do the advocacy opportunities that come along or not.  So far, he always wants to do it,  saying if we can help people,  we should.  I think it makes him feel good and builds his confidence and who doesn't want that for their child?! Especially one who is blind and will come up against social stigmas related to disabilities the rest of his life?! 

I keep thinking that people will get bored of hearing our story and when that happens, we'll know because the opportunities will stop coming,  but for now at least,  they still come often.  We also encourage other families like ours to share their stories, if it's right for them. We are thrilled that several have done so and tell us that it is in part because we've been brave enough to tell ours publicly and inspired them. This is how we all make positive change together. 

In addition to the specific advocacy activities below,  I am also grateful to be a member of the following committees and advisory groups:

- Special Education Advisory Committee (SEAC) for our school board

- Ontario Parents of Visually Impaired Children  (OPVIC) Board

- National Parent Voice for CNIB

- Kids Kicking Cancer Canada Ottawa Leadership Group

- CHEO Patient and Family Advisory Council (PFAC)

- CHEO Research Institute Family Leader 

- Leukemia and Lymphoma Society of Canada Pediatric Advisory Committee (PAC)

- Advancing Childhood Cancer Experience, Science and Survivorship (ACCESS) Co-Leads

- In Guage - COVID-19 in Immuno-compromised Children Study Family Advisory Council (FAC)

Some are monthly, others every few months and a few are ad hoc as needed,  enabling me to do many activities.  I feel passionate and good about doing these things in my personal time and it is easier now that Ollie is well and the kids are older and need less moment to moment attention.

Here are the highlights of our year doing specific advocacy activities for Childhood Cancer and Vision Loss:

January:

- Ollie and I were part of the Canadian Cancer Society's national campaign on palliative care.  The short commercials were aired in TV across the country and various streaming services and it made us laugh to get messages from all over the country from excited friends and family who happened to see it and were surprised to see us! Ollie and I did an interview with the Ottawa Citizen for this campaign and he later landed on the front page of the Ottawa Citizen for the second time in the last 4 years (the first was when he got Hope from CNIB in 2021)!

- The 6th annual Snow Angels for CHEO Campaign launched (our 3rd year involved) and I did an interview with founder Roland ten Holder on CTV Ottawa Morning. 

- I made and shared on social media my 12th blood donation at Canadian Blood Services. 

[Photo Description: Ollie smiles and holds a printed copy of the Ottawa Citizen showing a photo of him in his skateboard with his mobility cane on the front page.]

February:

- Ollie's class did Snow Angels for CHEO together (his amazing teacher Mrs. Endicott got the kids involved and they raised money,  too!) with special guest CHEO Bear in attendance!

- We did a final Snow Angels for CHEO event at CHEO (where Ollie did a second snow angel in his bathing suit this year) to celebrate the $35,000 that we helped to raise this year!

- Ollie and I were featured in (and in the cover!) of our local magazine,  Neighbours of Westboro, talking about why we advocate for Childhood Cancer Awareness and vision loss awareness. 

[Photo Description: A photo of the cover of Neighbours of Westboro magazine for January 2023. Ollie and Dawn wear winter coats and stand outside of Ollie's Clubhouse close together and smiling. The subtitle reads, "Meet Ollie and Dawn!"]

March:

- Ollie and Hope made a presentation to a local Cub group to talk about guide dogs and how they help people with vision loss!

- Ollie,  Hope and I shot an episode of an AMI-TV series about guide dogs (see below for details on when it aired!).

April:

- Canadian Cancer Society national palliative care campaign and Ollie and I spoke at their day on Parliament Hill

- Ollie, and Hope spoke at a CNIB Guide Dogs event at the CNIB Ottawa Hub. 

- I made and shared on social media my 13th blood donation at Canadian Blood Services. 

[Photo Description: Ollie speaks to Parliamentarians from the  podium with Dawn standing beside him at the Canadian Cancer Society's day on Parliament Hill on April 2023. A Canadian flag hangs in the background and two Canadian Cancer Society cards with daffodils that say "get better" can be seen on a table in the foreground. Photo courtesy of the Canadian Cancer Society. ]

May:

- An episode that I had previously recorded with Accessible Media Inc. (AMI)'s Double Tap aired as a special Mother's Day episode. 

[Photo Description: Ollie and Sensei Lyne sit at the Kids Kicking Cancer Canada  both at the Ottawa Inclusion and Para Sports Expo in June 2023. Sensei Lyne holds up a copy of the KKCC Ollie's story leaflet with Ollie's photo on it. ]

June:

- We attended the Ottawa Inclusion and Para Sports Expo at Carleton University and Ollie helped Sensei Lyne do a last minute Kids Kicking Cancer Canada demonstration, where he taught everyone to do power breathing!

- The cheque presentation that Snow Angels for CHEO founder Roland and I did with Leanne Cusack aired on the CHEO Telethon and I got to update CHEO donors on Ollie's progress since he was in the Telethon in 2021!

- I spoke on behalf of Kids Kicking Cancer Canada Ottawa at the 100 Women Who Care dinner, which resulted in KKCC getting $2,000+ in donations to help us to help other kids living with pain in Ottawa. 

- Ollie made his school's Track and Field Team for Para Ball Throw and Para Track. His buddy Zach offered to be and was an amazing sighted guide.  There were tears from many and so many cheers as they crossed the finish line together.  Although this wasn't done for advocacy purposes,  I was so proud that with the permission of Zach's mom I posted it on social media.  The school board contacted me this fall along if they could use the photo and story in their Director's Annual Report to shine a light on inclusion and Zach, his mom,  Ollie and I were happy to give permission. This is how organic advocacy happens to us when we share amazing moments.

- Ollie loaned his story to the Ottawa Cancer Foundation for their Lemonade Standemonium (an event Abby and I had helped with the year before Ollie's diagnosis) and although he was ill and couldn't come out that day,  I helped Kids Kicking Cancer Canada and Split Tree Cocktail to do a lemonade stand in gratitude for the dojo space that the Ottawa Cancer Foundation donates weekly to Kids Kicking Cancer Canada Ottawa Chapter. 

[Photo Description: A screen capture of a Kids Kicking Cancer Canada Instagram post of our lemonade stand with Dawn,  Sensei Lyne and Sensei Martina behind the stand on Split Tree Cocktail's patio.  Not pictured is Sensei Julie whose husband Steve owns Spilt Tree and provided the space and kitchen access. Photo courtesy of Julie Thompson.]

July:

- I made and shared on social media my 14th blood donation at Canadian Blood Services. 

August:

- The episode of Blind Trust: A Guide Dog's Journey, called Lost Dogs featured Ollie and Hope (with me in a supportive role as Ollie basically did this interview on his own) aired on AMI-TV.

September:

- For Childhood Cancer Awareness Month, as usual we did a lot of advocacy online.  We also did the Jesse McLean 5 km Memorial Wall to benefit Kids Kicking Cancer Canada Ottawa Chapter. And as usual,  Ollie participated in his school's annual Terry Fox Walk/Run, only given we were in Toronto for a CNIB event,  we did the walk together in Toronto. 

- I spoke at the CNIB Launch of the Strategic Plan in Toronto and Ollie and I represented CNIB Lake Joe camp at the Information Fair at the event.

[Photo Description: Ollie helps Rhonda from CNIB Toronto and Becky from CNIB Ottawa in testing a Braille Lego Exhibit before the CNIB Toronto Strategic Plan Launch and Info Fair in the CNIB Toronto Community Hub.]

October:

- Ollie and I spoke on a panel on patient-centred care at the SIOP international pediatric oncology conference that was hosted in Ottawa.  I also had the opportunity to speak on a panel as a volunteer about the work of the Canadian Pediatric Cancer Consortium (now called ACCESS - see below).

- Ollie and I attended the Kids Kicking Cancer Canada Ottawa Chapter golf tournament as ambassadors again and had a fun day. 

- I made and shared on social media my 15th blood donation at Canadian Blood Services. 

- Ollie and family attended a special event to meet and teach Mixed Martial Arts Champion Georges Ste-Pierre (GSP) with Kids Kicking Cancer Canada as part of the Fight for the Cure event.  

[Photo Description: Dawn speaks at the podium with Ollie standing beside her during the SIOP international pediatric oncology conference in Ottawa. Photo courtesy of Stephanie Grover from ACCESS.]

 November:

- Ollie and I spoke on a family panel for the launch of the CNIB Children's Charter on Parliament Hill on International Day of the Child. We were also interviewed about it by Capital Current. 

- The Leukemia and Lymphoma Society of Canada came to one of Ollie's Blind Hockey practices to get some footage of him playing and to interview the two of us about his cancer journey and resulting blindness for their Dare to Dream project.  The project aims to improve the quality of life of every child with a blood cancer and to help find less harsh drugs that cause fewer side effects. The video is expected to launch early in 2024.

- Ollie and I spoke to a group of staff at the Leukemia and Lymphoma Society of Canada online about what it is like to live through childhood cancer. This is to inform their revamp of their materials for children,  adolescents and young adults and caregivers. 

- Ollie,  Hope and I participated in the annual Carleton Place Santa Claus parade on the CNIB Guide Dogs float for the third year in a row!

[Photo Description: Ollie holds a copy of the new CNIB Children's Charter at the event on Parliament Hill where he and Dawn spoke on a family panel.  He also holds his mobility cane.  The CNIB both can be seen behind him to his right and takes of attendees are behind him. ]

December:

- As one of the Persons With Lived Experience (PWLE) Co-Leads for the Education and Training theme,  I attended the inaugural annual general meeting of the Advancing Childhood Cancer Experience, Science and Survivorship (ACCESS - formerly the Canadian Pediatric Cancer Consortium or CPCC) and participated in three days of meetings with other PWLEs, clinicians and researchers about how we can all work together to do better for kids fighting cancer in Canada,  particularly those like Ollie that relapse.

- I recorded an episode of a podcast about being a cancer parent with dear friend and fellow cancer mama Sam Taylor (whom I was connected with by her best friend and my fellow CNIB Buddy Dog mama Aubray, after Sam's daughter was diagnosed with cancer in fall 2022) for her upcoming series The Deep C Podcast which launches in January 2024!

[Photo Description: Dawn poses in front of the ACCESS banner at the inaugural annual general meeting.]

Our Family's Year

In addition to the advocacy,  we had a pretty good personal year for the whole family,  too.  

Ollie finished a great year in grade 5,  had a terrific summer going to CNIB Lake Joe for 3 weeks again this year, and spent 2 with his CNIB Ottawa friends doing fun day camps here,  too.  He had a terrific year in blind hockey,  ending last season strong with the national blind hockey tournament in Toronto. There one of the national team's goalies convinced him he should try goalie, as it is a great position for someone who is totally blind like Ollie.  So this fall,  Ollie learned to be goalie for his Ottawa 67s Blind Hockey team and is loving it! Not sure dad is loving lugging all of the equipment though! LOL  

[Photo Description: Ollie in his goalie equipment in net for a practice with the Ottawa 67s Blind Hockey team in November 2023.]

In addition, he made great progress on his skateboarding again this year, got CNIB to hold a skateboarding try it day with the Ottawa Skateboarding Association, and continues to work with his instructor Jordan.  In Kids Kicking Cancer martial arts,  Ollie got his orange belt in the summer, and this fall he got to meet Mixed Martial Arts (MMA) champion Georges Ste-Pierre (GSP) at the Fight for the Cure event.

[Photo Description: Ollie and GSP take fighting and guard stances to pose for a photo.  Ollie is wearing his gi with an orange belt and his mobility cane is leading on the wall behind them. ]

In May Abby and I were beyond lucky to go to the Taylor Swift #ErasTour concert in Foxborough, Massachusetts. It was a truly epic weekend and a special opportunity that was all about Abby in recognition of all that she sacrificed for her brother the past few years,  and the hard work that she'd put in at school in 2021-2022 despite its challenges.  Watching Abby's joy and wonder at the in person concert of a talented and giving artist who meant so much to her during the hardest time in her life was very emotional for me and made me feel even more gratitude for where we are today versus where we were 4 years ago at this time.  

[Photo Description: Dawn and Abby singing while taking a selfie at the Taylor Swift #ErasTour. Other singing fans can be seen behind us and we are barged in pink lights from the stage. ]

In July we just relaxed and took some vacation to recharge (hence no July advocacy events listed above). We started by visiting my family in Chatham- Kent for the first time since cancer and the pandemic, now that Ollie is fully vaccinated.  From there we went to CNIB Lake Joe for Ollie to attend hockey camp on his own again this year and Abby, Mario and I rented a cottage nearby again on Healey Lake.  It was a great opportunity to spend devoted time with Abby again, and help to make up for time we missed together with her when Ollie's illness often took us away from her. 

We also joyfully celebrated Ollie's third re-birthday and Abby's third hero day. 

[Photo Description: Abby,  Dawn's mom Luann,  Ollie,  Dawn and Hope are arm in arm during a family visit in Chatham-Kent in July 2023.]

In August we really enjoyed our family time at CNIB Lake Joe year because it was our first time attending Family Week versus Holiday Week, and we met many more families with kids, and got to catch up with other families we've met through our various activities in the blind and low vision community the past 2 years. Ollie and I stuck around in Muskoka for another week to attend CNIB Buddy Dog Camp and it was even bigger and better than the first year.  Spending time with this community is healing and validating in ways I can't adequately explain.  Watching your child with vision loss comfortably and confidently do everything anyone else can do in a safe and accommodated environment gives you a window into what the world could be like for all people with disability, if we only made the world more accessible for them.  It inspires us to take this view into the world through our advocacy all year. 

[Photo Description: Ollie and CNIB Buddy Dog Hope and Dawn and CNIB Guide Dog Sherman pose for a photo on the boat dock at CNIB Lake Joe.  Both dogs were puppy raised by Cathy Kieran.]

Abby worked all summer with kids and enjoyed it so she continues to work with them a couple of days a week after school. Her new school is a much better fit for her and she is doing well. 

Mario is as always stoic and constant.  He continues to work from home for the most part and spends a lot of time with the family. He is adjusting to the kids growing up and changing rapidly.  Neither of us can believe how fast it is all happening now that we are no longer watching the cancer days crawl by.  

We spent more time this year with dear friends, and I overcame my anxiety of being in large groups since Ollie's illness.  Overall we've been well other than minor viruses (all vaccinated for flu and COVID this fall and happy to report that so far we have avoided both) and we've all paid more attention to our health this year,  taking care of minor health issues that have taken a back seat to the more major ones in our family over the past few years. 

Hope and Chewbacca continue to provide lots of love and comfort to all of us and eat far too many treats! LOL

So like 2022, 2023 has been a really good year for our family.  We remain grateful for this constancy after so much upheaval and uncertainty.  We just wish that all cancer families could get to stability and wellness,  too,  and that all kids with vision loss could thrive,  so we continue our efforts in both areas into 2024! Thanks for your ongoing love and support.  Count your blessings this New Year's Day and wishing you all a happy and healthy 2024!

[Photo Description: Abby, Mario,  Ollie and Dawn take a selfie during a dinner over the Christmas holidays recently. Abby and Mario are wearing paper crowns from their Christmas crackers. ]

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.