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. ]

Sister S-HERO Day (Part 1)

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

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

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

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

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

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

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

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

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

- his actual stem cell transplant last summer, and 

- his 254 days of recovery since. 

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

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

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

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

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

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

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