Ollie's 4th Re-Birthday/Abby's 4th Hero Day

It has been 6 months since I wrote a blog post as with Ollie's many activities these days,  we share more regularly on Instagram and other social media (follow Ollie @cnib_ollies_hope for regular updates), but we needed to mark the occasion of the fourth anniversary of Ollie's stem cell transplant with Abby's beautiful lifesaving half match cells today.  

[Photo description: Abby smiles and has her arm around Ollie while he gives two thumbs up wearing his graduation suit with navy dress pants, a white short sleeves button down shirt, a vest, a Maple Leafs bow tie and blue reflective sunglasses. They are at Ollie's grade 6 graduation and posing in a balloon arch under a Congratulations banner.]

To refresh your memory,  Ollie was diagnosed at CHEO with Anaplastic Large Cell Lymphoma ALK Positive in November 2019 when he was 7 years old. After two rounds of chemo he suddenly relapsed in his central nervous system and went blind.  He had a short stint in the PICU, and he got back into remission just as the pandemic hit.  Because of the pandemic we were unable to use one of the three perfect stem cell matches on the international registry,  so our then 11 year old daughter Abby became his half match (haploidentical) match instead.   

We moved to Toronto at the end of March 2020 and Abby had her beautiful cells collected at Sick Kids Hospital on March 31, 2020. He was supposed to get them April 16, but by April 8th had relapsed again in his central nervous system. We tried more intrathecal chemo and a cancer inhibitor drug (Ceretinib) that didn't work for him. I had an agonizing conversation with our transplant/oncology team at Sick Kids about how there were few options left and maybe we should think about not treating him and causing him more pain or sudden death.  I raged against this and told our team we were going to try any, and all options left before we'd be done.  

Back to Ottawa we went to try 13 sessions of brain and spine radiation and a drug which was never tested in children (Lorlatinib), obtained under compassionate grounds from the manufacturer. Blessedly, this worked and got Ollie back into remission and on to transplant. We moved back to Toronto in early July 2020 and after 6 sessions of total body radiation and 2 days of chemo, got his transplant on July 20, 2020 with Abby's incredible cells.  You can read about Ollie's journey on our blog and about his transplant day at Sick Kids Hospital here. 

Four years ago when his future was a big question mark and the world was topsy turvy during the pandemic, we could not have imagined how he'd be thriving today. His recovery and his adapting to his blindness and showing everyone all that he can do have been extraordinary. Each year on the anniversary of his stem cell transplant, we share an update on how he's doing for all who have helped to get him well with their support, medical service,  prayers and love.  

Over the past year here is how Ollie has lived his best life and made his mark on the world:

- Officially ended treatment at the end of three years post transplant in August 2023 and has remained stable without any new medical issues over the past year.

[Photo Description: A split image with 7-year old Ollie and Dawn in the hagen at CHEO on his first day of diagnosis testing in October 2019 and after ringing the Celebration Bell in the same garden in his last day of official treatment when he was 11 in August 2023.]

- Was part of a panel of speakers (with mom) on patient-centred care for the SIOP international pediatric oncology conference held in Ottawa in October 2023.

[Photo Description: Ollie and Dawn pose among a large group of speakers and moderators from the patient-centred care panel at SIOP 2023.]

-  Played on his school's floor hockey team,  and was part of their Track and Field and Cross-Country teams,  running with a sighted guide. In addition,  he also played another season of Beep Kickball with Kids from the Ottawa vision loss community,  participated in a paraswimming program at Carleton University, and learned to play Goalball this spring from members of the Canadian Paralympic Team who will compete in Paris in the coming weeks.  

- Inspired a skateboarding program for youth with vision loss in Ottawa through the CNIB and the Ottawa Skateboarding Association and is helping to teach the program,  too!

[Photo Description: Ollie demonstrates a skateboarding move on the half pipe ramp at Ottawa's Lansdowne Park with his instructor Jordan nearby and other youth with vision loss watching.  He is using a mobility cane while skateboarding.]

- Helped to launch the CNIB's Children's Charter of Rights and new strategic plan with the goal of "Our kids will thrive." Spoke with mom Dawn at the CNIB Toronto event and at the Ottawa event on Parliament Hill. 

[Photo Description: Ollie sits beside Dawn holding a microphone while speaking on a family panel at the Ottawa launch of the CNIB Children's Charter. ]

- Played in his second season of Canadian Blind Hockey and his first season as a goalie with the Ottawa 67s Blind Hockey Team.  He also played in the Canadian National Blind Hockey Tournament in Toronto in March 2024 where he is one of only 3 youth Blind Hockey goalies in the entire country, and the youngest ever goalie to play Canadian Blind Hockey. 

[Photo Description: Ollie dressed in his red,  black and white Ottawa 67s Blind Hockey goalie gear waits in net to save a goal.]

- Was a CHEO Kid Ambassador for the annual Snow Angels for CHEO fundraising campaign for the 4th year in January 2023.  Watch his snow angel making in his bathing suit here.

- Participated once again with CNIB Guide Dogs and his CNIB Buddy Dog Hope in the Carleton Place Holiday Parade in November 2023 and the CNIB Buddy Dog Camp in Muskoka at CNIB Lake Joe in August 2023.

[Photo Description: Ollie walks his CNIB Buddy Dog Hope along the waterfront one morning at CNIB Buddy Dog Camp.]

- Was featured in the Leukemia and Lymphoma Society of Canada's national campaign in May-June 2024. Dawn sits on the LLSC's Parent Advisory Committee and has been helping them to develop new pediatric cancer supports as well.

- Spoke (with mom) to Executives at Canadian Blood Services at their annual leaders summit in Ottawa in May 2024.

[Photo Description: Ron Vezina, VP of Public Affairs,  Dawn,  Ollie, and Dr. Graham Sher, CEO are arm in arm at the Canadian Blood Services Executive Leaders Summit in Ottawa in May 2024.]

- Was confirmed in May 2024, to fully complete his baptism in the Catholic Church. He chose this because of the deep faith that he has, having survived so much thanks to God and the incredible medical team and army of support that he sent us. 

[Photo Description: Dawn,  Mario,  Ollie and Abby pose in the steps of the church for a family photo on the day of Ollie's confirmation in May 2020.]

- Recently received his orange green belt in martial arts with Kids Kicking Cancer Canada Ottawa Chapter. This is one of the highest belts that they have given in the Canadian programs to-date.

- Gave a Para-Athlete testimonial as an Ambassador representing both Kids Kicking Cancer Canada and Canadian Blind Hockey and delivered a demonstration of Kids Kicking Cancer Power Breathing at the Ottawa Inclusion and Parasports Expo in June 2023.

- Graduated from his elementary school from grade 6 in June 2024 - a bittersweet day due to leaving the incredible community that supported him during his darkest days, and celebrating this milestone when we weren't sure he'd ever see it 5 years ago. (See photo above)

- Spoke (with mom) to 400 donors at a fundraising dinner in June 2024 for the Ottawa Sports and Entertainment Group (OSEG) Foundation on behalf of his Ottawa 67s Blind Hockey Team that they sponsor. 

- With his family was part of a video shoot in June 2024 for a special project with Childhood Cancer Canada launching in September.  Here's a behind the scenes sneak peek.

Watch for details soon!

[Photo Description: Ollie poses in front of the Sick Kids Precision Health Care Crystal Ball in September 2023 on University Ave. in Toronto.  The crystal ball was inspired by #TeamAddy. It was actually Precision Health Care that identified Ollie's miracle drug through genetic sequencing.]

So Ollie has had another incredible year of wellness and has lived the big beautiful blind life that we promised our team we would ensure he'd have WHEN (not IF) they saved him. The only minor medical issues he's had this year were changes needed to his thyroid medication because of his growth spurts (he's now 5'3" and growing normally without intervention and wears a size 10.5 men's shoe already!), and we discovered that like his sister he now seems to have a sensitivity/allergy to chlorine (fascinating as he never did before and we've heard many stories of a recipient suddenly having the same allergies as their donor), which is easily managed with an antihistamine. He has his annual oncology checkup at CHEO in September and at this point there's no concerns. He'll have bone density scans and bloodwork next week for endocrinology who continues to follow him every 6 months.  

His attitude is always so positive and he never lets his fear hold him back from trying new and exciting things.  Last year at SIOP a woman attending asked me if he had a hard time staying active with his blindness and I literally laughed out loud, proceeded to apologize, and explain that there is little that he doesn't do.  In the past week alone he's done martial arts,  therapeutic horseback riding, and learned to play Blind Golf thanks to the amazing resources in our community. 

Last year he got a character award at school for his grit.  I think that really is the best way to describe him.  He's literally influencing and changing the world for the better with his advocacy already and he's only 12. We couldn't be prouder or more grateful. 

This also serves as my annual reminder to CHEO and Sick Kids Hospital to continue to work tirelessly to find new ways to treat rare cancers,  and never to lose hope or see these incredible kids as just statistics. Statistically he shouldn't be here today with all that's happened to him.  But he always beats the odds and is atypical in the best ways.  I am so grateful every moment that I listened to my gut and insisted we try the next option to save him.  And that our medical team listened to me and found the next thing to try. 

[Photo Description: Abby and Ollie high five after blowing out their 4th Re-birthday/4th Hero Day cake today.]

As for the rest of our family,   we're all good.  Together despite all odds and mostly happy.  The past year has seen greater stability for all of us,  especially Abby. She is now 16, no longer anxious about friends knowing our family's story, and she's impressing us with how responsible she is this summer as a director at a local summer day camp. I feel like we'll blink and she'll be off to her next chapter in post secondary school and am basking in these last precious years of us all being together, because we know too well what it's like to be apart. Because she's working every day with kids, and given her personal experience with childhood trauma she's thinking about a career in psychosocial support for children who have been through trauma. I cannot imagine a better possible path for her to share all that she's learned the past 5 years.  No matter what she chooses to do,  I know that all of this will translate into her changing many lives in incredible ways,  too.  She's certainly changed all of ours with her selfless gift.

Mario is stoic as always.  Happy to spend time with all of us,  tinkering with his computers,  building Lego pretending it's all for Ollie and not really a childhood dream come true for him,  and being constantly dragged out of his comfort zone by all of us who love him. 

I continue my many advocacy activities - some with Ollie as noted above and some on my own (e.g. as Co-Lead for ACCESS' Education and Training theme), but all with the desire to give back and to make the world a better place for my children and other families who must endure what we did. Many ask me how we do so much advocacy on top of our everyday life.  The truth is that it's a true passion and has been a need the past 4 years to help us process and make some kind of sense out of something that seemed so senseless. It's been a gift that we've given both ourselves and the childhood cancer and vision loss worlds and a way to pay what we were given forward. As always,  it always feels so great to give, so we'll keep doing it as long as we can. 

Keeping the Family Healthy During and Post Cancer

When Ollie was first diagnosed I had a terrible upper chest and sinus infection. Likely exacerbated from the stress of testing and diagnosis. I'd had two rounds of antibiotics already that didn't work, including a bronchial puffer and oral antibiotics. When I heard he'd need to go into hospital for 12 days I was frantic that they wouldn't let me in because of this illness I couldn't get rid of. 

I went to Shoppers Drug Mart late one night in the week between us hearing he had Non-Hodgkin's Lymphoma and later his specific diagnosis of Anaplastic Large Cell Lymphoma (ALCL) and threw myself on the mercy of the young pharmacist there. I explained to her that I'd tried different antibiotics prescribed by doctors, but could not shake this and my actual desperation because I was about to be admitted with my 7 year old son for chemo and needed to keep him and the other kids at the hospital well. 

This kind and knowledgeable pharmacist started by compassionately telling me how sorry she was to great about my son and wishing us strength for the battle. Then she said, "Go to aisle 7 and find the Flonase nasal spray in the allergy section. It used to be a prescription antibiotic for sinus infections, but is now available over the counter as an allergy spray. It's very effective within days. Buy our genetic brand if it's cheaper as it is the same thing." Then she sent me off and wished me well. 

[Photo description: A new package of Flonase can always be found in my medicine cabinet now and works for allergies and sinus/respiratory infections]

That stuff cleared up whatever I had within a few days, but I took it the recommended course to be sure. I often send grateful prayers for that kind pharmacist and her knowledge. 

After that I knew the importance of staying well. During chemo, radiation and stem cell transplant any little bacteria or virus could have killed Ollie or another kid in treatment because with no neutrophils they could not fight infections. I could not live with the knowledge that one of us might do that to him.

Enter my dear friend from high school, now a registered Naturopathic Doctor, Dr. Colleen McQuarrie at Ottawa Integrative Health Centre (OIHC). Colleen has treated me off and on for the past 20 years. She had seen Ollie professionally before we landed at CHEO for testing. I'd ask her to consult because his pediatricians were convinced that his bump was a bacterial infection, but antibiotics were not working. I needed a trusted opinion and she helped us out. She imparted to me that she did feel a mass was serious and that his pediatrician was not moving us fast enough to get us to CHEO. She was the one who told me that we needed an Ear Nose and Throat consult at CHEO and she walked me through how to get my own pediatrician's office to do this.

When she heard that Ollie was finally diagnosed with cancer, she reached out to support me and said she could put together a cocktail of supplements to keep me well and recommended a few for Abby and Mario, too (both who are also patients of hers). She then kindly left them at my house for me and wouldn't take any money, saying it was her contribution to getting us on the path to wellness. I have taken this combination since then and was not sick a single day in his 2 years of treatment and stem cell transplant recovery. 

[Photo description: Dawn's daily vitamins and supplements in 10 bottles.]

Here is what I have taken for 3 years now (a few additions along the way for other reasons noted):

- Women's multivitamins

- Probiotic - I take 10 billion, but there are many formats - to keep gut flora healthy to aid in immune system function

- Iron - 232 mg - I have often been anemic since since high school and especially when you cannot eat leafy greens easily in hospital, this is important

- Vitamin C - 500 mg - helps to absorb sewers of the other supplements and boosts immune system

- Magnesium Bisglycinate/Pure Elemental Magnesium - 200 mg - I started getting leg cramps in the night in hospital when my body was so stressed and this has helped to alleviate those. Ollie also took it for a period of time when the cramps in his legs were bad during the early days of taking his Lorlatinib

- Omega 3 - 1200 mg - I have taken this for 15 years to help with my joints and sciatica. Also good for my heart and brain

- Folic Acid - 1 mg - we added this when I decided to make it my goal to give blood every 84 days as women are allowed in Canada to pay it forward for all who are saving my son. The Folic Acid helps to reproduce healthy blood cells.

- Zinc - 50 mg - to boost immune system

- D3 - 1,000 IU - to boost immune system

- Turmeric/Curcumin - I began taking this daily 15 years ago for my sciatica as it is a natural anti-inflammatory. Helps for any aches and pains in the body and you get a lot sitting around and sleeping in a hospital.

Mario and Abby got sick only once with strep throat in February 2020 before COVID and making everywhere began and Abby was still in school. That was super stressful and they both isolated for 10 days because Ollie was in the Pediatric Intensive Care Unit (PICU) with his first brain lapse.  After that they were way more careful, masking everywhere and taking daily supplements, too (although fewer than mine). Most important for everyone in the family is Vitamin D3, Zinc and a multivitamin. The cancer kid could only take D3 as others can mess up the absorption of their other cancer meds. 

Now that Ollie is 3.5 years in remission and his pediatrician is slowly retiring we have opted to have him see a Nurse Practitioner (NP) in a clinic that specializes in people who have or have had cancer. His new NP has so far impressed me with her comprehensive understanding of his medical history and her suggestions to continue to keep him well. For example, in addition to taking his D3 (which we bumped up to 2,500 mg daily) and a multi-vitamin now, she has added a K2 vitamin explaining that while the D3 helps him to absorb calcium, much of it still goes to waste due to inefficient absorption, so the K2 helps the calcium to go directly to his bones and help to strengthen then to improve his osteopenia (a result of long -term steroid use during treatment). 

She's also recommended that we add more Zinc as it helps with testosterone, which his endocrinology team is watching as he enters puberty. In addition she is recommending some options for a gentle detox of his liver which we are looking into. She also shared some evidence that the use of melatonin has anti-cancer benefits and was glad to hear that he had used it extensively during and after transplant as we worked to combat his lack of circadian rhythm due to not being able to see when it is daytime versus nighttime. 

While we are very grateful to Western medicine for ultimately saving our boy, we also believe that a combination of Western, and complimentary and alternative medicine generally reaps the best results and the healthiest people in the end. As we have shared in this blog before, Ollie had osteopathy treatments from our friend Elliot during chemo and regularly for the first two years after transplant. We are big proponents of massage therapy for any in the family that could benefit from the stress relief and know that CHEO was running a pilot last year where they were offering gentle massage on the oncology ward. Acupuncture has helped my own sciatica and related neuropathy in my leg and foot.

Always check with your own care team before taking any combination of supplements and vitamins, or using any complimentary or alternative therapies, but we hope that this may give you ideas to keep your family well through a cancer journey, too. 

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. ]

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"]