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. ]