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. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With love and gratitude always,

The Acosta-Pickering Family:

Dawn, Mario, Abby and Ollie

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

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

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

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

- Ollie's class went cross country skiing; 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Things to pack/take for hospital stays

I get asked a lot by new cancer families what they should pack/take to hospital for admissions so am sharing this suggested list. Some I've added to the bottom specifically for stem cell/bone marrow transplant (especially if you have to move far away from home for it and can drive there).

We had 3 bags that we always had at the ready:

1. Hospital Daypack - A backpack ready to grab at the door in case of emergency where we had to go to the hospital right away and for use during hospital outpatient visits. Our visits were often full day affairs and emergency visits often ended up meaning being admitted, so we always needed to have these at the ready for the patient. In this bag at a minimum we had:

- Favourite stuffie

- Change of clothes (that could also be pajamas so usually pajamas or sweatpants, t-shirt, sticks and change of underwear)

- 1-3 days dose of current meds and a bottle of Children's Tylenol in his preferred flavour (we have one med obtained under compassionate grounds that the hospital couldn't get, so always had to have some in case, the rest can generally be obtained at hospital, but never underestimate a last minute need for Atavan for anxiety, Ondansatron for nausea or even Morphine for pain and how long it might take for them to get a doctor to give these orders in hospital while you wait to be admitted or are having outpatient procedures)

 - Blanket (we bought one that is fleece and folds into itself to make a pillow which is great to leave in the hospital daypack for unexpected Emergency Department visits, scans, clinic days, etc.)

- Toys and distractions (Fidget toys; dice and a hospital kidney dish to play games; deck of cards/uno game; new container of playdoh or putty; pop it game; mini Bop It; Lego Minifigure blind bags; Tablet or old phone with charger to watch videos on with hospital Wifi, download audible books on, earphones, etc.)

- Hand sanitizer, extra masks, sanitizing wipes, large ziploc bags for soiled clothes, etc.

- Tegaderm dressings/tape to reinforce around edges of central line dressing if it started to peel off, etc. and a pair of medical scissors (they'll give you a pair and tape at hospital if you ask)

- Emla patches to numb injection site (or port if you have one) - easier for day trips than the cream

- Mio Water Flavouring (to put in the contrast that they have to drink for PET Scans - usually at the children's hospital for CTs they have various flavours, but at the adult hospital for PET Scans they only ever has pomegranate and it once made Ollie throw up. Ollie always preferred Strawberry Watermelon or Orange so we learned to take our own.)

- Refillable water bottle

- A few snacks and treats (granola bars, container of Shreddies or Cheerios, lollipops or ring pops as rewards or to help the meds go down, etc.) for child and parent as the ways are often long and not an Emergency Departments have vending machines or allow food to be ordered from food services while you wait for hours.

- Small incentive prize for doing hard things like being brave for pokes and scans (Ollie always wanted Beyblades, but pick your child's fave small toy)

- Vaseline (good for dry lips, sore bums, etc. but always use a clean medical glove so as not to contaminate. Hospital will generally give you an new travel size if needed.)

- Small hand sanitizer and extra medical masks (you'd be surprised at how often dispensers are empty at hospital)

- Blue throw up bags (ring on top to hold open like a bucket, but compact and disposable. We kept them handy in the cars, too)

- Extra PICC line cover (made of stretchy fabric or in a pinch cut the foot off a sock that the snug but not right on their arm over the central line)

[Photo description: Ollie sleeps in an exam room at the CHEO hospital under his folding fleece blanket while listening to his tablet and getting an infusion of IViG to boost his antibodies.]

2. Hospital Overnight Bag - for short stays of 1-4 days - always packed and preferably left in the trunk of the car, it generally included:

- Pajamas for the patient and caregiver

- Change of clothes for the patient and caregiver

- Slippers for patient and caregiver

- Toiletries for patient and caregiver for at least an overnight stay, but 2-3 days if you don't have a co-worker parent or co-caregiver who can bring up what you need if admitted for an infection for 3-4 days)

- A few snacks and bottles of water (late night emergency room visits = nothing open if your kid is starving)

- Note that I would usually either also have his daypack noted above with me or transfer the most important things from it (e.g. Stuffie, tablet, meds) into the overnight bag.

- Eye mask

[Photo description: Ollie sleeps in an Emergency Department exam room at the Hospital for Sick Kids in Toronto. We haven't bought the folding blanket/pillow yet and there was no pillow in this room so we had to fold up my coat for his head! Our overnight bag is sitting in a nearby chair. We waited that night for 10 hours for a hospital bed to become advisable to be admitted and no food could be ordered there, and I could not leave him to get food. Thank goodness I brought drinks and snacks!]

3. Hospital Food and Supplies Bag - for our planned admissions for chemo and transplant - this one was a big canvas bag from Land's End (see photo below) and in it we would have:

- Cozy blankets for the patient and caregiver for sleeping (hospital supplies, but nothing like comfort from home)

- Magic Bag (put in freezer or microwave to help with pain or discomfort)

- Meds for patient and caregiver (note that often meds for kids are in tablet form and hard for them to swallow at first until they learn, so worth considering getting your own supply of kid friendly versions. For example, Ollie took Melatonin, but the hospital certain was a mint flavoured tablet that he hated so we bought and took Berry gummies instead. Also, they had liquid Tylenol, but usually only grape flavour and Ollie only ever liked strawberry-banana so we always had at least two on hand)

- Emla patches or cream our Maxilene cream to numb injection site (or port if you have one) and Saran Wrap to hold cream in place  - apply 30 minutes before poke

- Snacks and drinks for the patient and caregiver (Juice boxes, Campbell's Soup At Hand, Lipton Cup of Soup, Soda Crackers, Granola bars, chocolate, anything individually packaged that didn't need refrigeration, cereal, etc. The hospital generally has a parent kitchen on each ward with fridge, microwave, kettle and often a Keurig machine. Some hospitals have mini-fridges in the inpatient rooms as well.)

- Keurig Coffee Pods, sugar, coffee whitener, stir sticks and/or milk or cream. Also a travel mug or two or disposable coffee cups and lids (dollar store).

- Swiss army/pocket knife (so many times you need scissors, a nail file, a knife, a can opener, etc. and they're hard to find in hospital!)

- Salt and Pepper (they always forget the salt with the meal tray and cancer patients crave salty! We bought a set of salt and pepper at the dollar store and left in hospital bag)

- Foods to help get oral medicines down (chocolate pudding cups; squeezee applesauce packages or other fruit flavours; if we knew we were being admitted and had a fridge in the room or access to the family kitchen with a fridge, yoghurt tubes; Lollipops or ring pops to help with the yucky aftertaste of drinking contrast for scans, etc.)

- Flushable wipes (for the countless times the patient will have diarrhea and may even use a bed pan or commode. The hospital will give you dry wipes that you can wet, but not convenient and not very soft on skin that can feel burned after days of diarrhea)

- Baby wipes - for hands, quick cleanups, etc.

- Small supply of napkins, disposable plates, cuts, utensils, ketchup packets (most hospitals have these in the family kitchens, but sometimes you can't or don't want to leave the room to get one)

- Plastic hangers (2-4) - hospital rooms often have closet cupboards, but rarely hangers, little space for storage and if it is jacket weather you need to put them somewhere! We learned to take some with us and bring them home are each time.

- PICC line rubber/waterproof cover for bathing (can usually buy online or at hospital pharmacy) or Glad Press and Seal to keep vegan line dry while bathing.

- Hand cream - all that hand washing and sanitizing makes for dry and cracked skin which can then bring infection into the hospital.

[Photo description: An extra large canvas bag with "Ollie" embroidered on the side that held all of our hospital admission foods and supplies.]

In addition for longer admissions we also packed:

4. Planned Longer Admission Suitcase - same as #2 above with enough clothes for the entire planned stay or at least half and arrange for a spouse, parent, friend to deliver a second set half way through the stay and take the dirty ones to wash. 

5. For Stem Cell Transplant and/or moving far away to do it/living in hospital for long periods):

- Mattress topper/camping mat or sleeping bag for the sleeper chairs that are notoriously uncomfortable (absolutely the case at Sick Kids Hospital in Toronto in the BMT unit) and something to wrap it up in during the day (I had a luggage strap and an extra large garbage bag and sick it behind the chair during the day)

- Clean or brand new indoor shoes or slippers for the room for the caregiver(s). Leave outside dirty ones in clean room or bagged up in the isolation room.

- A bunch of new/unopened fidget toys, activities, small Lego sets, books, mini Bop It, Bubble pop, travel games, etc. Must be something you can fully sanitize taking in or brand new (outside package wiped with Lysol wipes before you take them in) to avoid bacteria and germs.

- Things to decorate room - we took posters, pictures and cards from friends wishing Ollie well. An inspirational photo or poster also works. You're in that room 24/7 for weeks (maybe months) and want to be comforted/inspired to keep going.

- Box of kitchen garbage bags to double bag things you're bringing in from outside. Remove outside bag and discard before bringing into isolation room. Also good for hauling dirty clothes out for washing. 

- 2 or more identical stuffed animals (whatever is you child's fave) - trade out daily for a new clean one if possible to avoid bacteria. Also kids drop them in the floor and sometimes throw up on them.

- 4-6 Shoe box or slightly bigger size clear plastic containers (dollar store) labeled with your family name to store food items in kitchen cupboards, communal family kitchen fridge or in your room. 

- Small single use boxes of laundry detergent or laundry soap pods - sometimes you have to pop up to the Ronald McDonald House room to do a load of laundry and there isn't always staff to sell you soap! 

Generally we have over-planned, as we have learned how difficult it can be to source things while in hospital (especially during COVID when often visitors are not able to bring what you need). I also wrote an earlier blog post about things to buy for cancer patients that can give you ideas about what we needed.

Transplant Anniversary Highs and Lows

Photo description: Abby and Ollie stand under a marquee sign pointing up at the Gladstone Theatre that reads, "Happy 1st Birthday Post Stem Cell Transplant Ollie! Happy Hero Day Abby!"

On July 20, 2021, we celebrated Ollie's re-birthday/ one year anniversary of stem cell transplant and Abby's Hero Day (part 2 as we celebrated the one year anniversary of her actual stem cell donation back in March as part 1 given the relapse that Ollie had in between her donation and actually getting the transplant in 2020). 

It was a long anticipated day by Ollie and I and one that Mario and Abby preferred to mark more quietly. It seems as we go forward, Mario and Abby want to get back to "normal" (whatever that is - especially in the era of COVID-19), while Ollie and I are so irrevocably altered by it all that we can no longer just go back to who we were before. Perhaps this is because it's Ollie and I who were the every day participants in cancer treatment and stem cell transplant and neither of us got to live in our regular daily life over the past two years. Whereas Mario and Abby still went to work and school (albeit online since March 2020) and carried on with their usual day to day activities most days. Obviously both have been affected by everything, but given Abby is very much like her daddy in some ways, both appear to be stoic, yet have big emotions brewing just beneath the surface.

Abby did let me rent the marquee at the Gladstone Theatre (a great way to mark the special  occasion and to help out a local theatre company that has struggled like most during COVID) and agreed to pose for a photo with Ollie to help us promote our blood donation clinic that week, but felt that was enough for her.

 Photo description: A masked Ollie pushes the cart at Toys R Us with new Beyblade sets. 

Earlier that week Ollie had his last monthly check up and bloodwork at the CHEO Medical Day Unit (MDU) post transplant clinic. The doctor confirmed that all is well, he could stop taking the anti-viral he's been on for a year and is cleared to go back to school if COVID numbers stay low. He still cannot have the vaccines for chicken pox or measles, mumps and rubella (MMR) because they are live vaccines and he cannot have live vaccines while he remains on the Lorlatinib ALK-Inhibitor drug. So he has a medical exemption for those until he finishes his drug and if he should be exposed to any of these, there is a treatment plan if we act fast enough. Honestly it's all stressful, but many cancer kids faced same pre-COVID. And he desperately wants to go back to school and be normal. 

I asked about the protocol for fever going forward and we're now done having to immediately go to hospital for fever! So normal parenting of a kid with run of the mill day to day  illness now. It's mind blowing that one day we need to go to ER for any fever or sign of even a cold and and the next we don't. Of course there's also COVID to worry about and there is heightened risk for stem cell transplant recipients, so I was clearly still uncertain. Dr. Abbott reminded me that the team is still there for us and if we have any concerns we can call or email anytime. From this point forward he'll have checkups and bloodwork every 3 months, but does have certain other appointments in between. 

As a celebration Ollie asked me if we could do something like go to Toys R Us. I think he meant for curbside pickup, but given it was a Monday afternoon and not likely to be busy, I took him inside to pick his own special prizes for this milestone. This was his first time in a retail store in 20 months and he was almost vibrating with the thrill of it. Funny because pre-cancer he hated shopping with me. He touched nothing before I wiped it down and we stayed far away from the free other shoppers just in case, but it was enough normal for him.

Photo description: Dawn sits in a lounge chair connected to a machine while she donates blood at Canadian Blood Services on July 20, 2020 in honour of Ollie one year anniversary of his stem cell transplant and Abby's Hero Day.

Ollie didn't want to do anything different during the day, but had hoped to have some family friends over for cake on the deck. Unfortunately rainy weather put a damper on those plans, so we celebrated with just us four the night of the anniversary with Ollie's Pizzas from Gabriel Pizza and cupcakes and later in the week had cake with some friends, too. Naturally he got the latest Beyblades Stadium set as a re-birthday present! 

The actual day itself was quite emotional for me. It's taken me these last few weeks to unpack all that I have been feeling recently, hence the delay in writing this piece which I started, but needed to leave because I didn't know what to write to explain it. The fear and the relief that I felt on that day last year was not altogether different than what I felt on the same day this year. More relief and less fear this year, but always the underlying worry of what might be next for our incredible boy to face. 

I did a pre-recorded interview with Alan Neal from CBC Radio's All in a Day and Jan Grant from Canadian Blood Services (who has been amazingly supportive of our donor clinic and with whom I have a lot in common). Even doing the interview was more emotional for me than usual. As it happens we'd booked the donor clinic months ago, but suddenly the need for blood and blood products has risen dramatically as non-emergency surgeries and such have been re-started post lockdowns. So it was timely to be doing this and I found myself remembering being in the phone with the transplant doctors in March 2020 as COVID began and them telling me they weren't sure that there would even be enough blood available if Ollie needed it. To which I replied that he was the same blood type as I was and they could just hook me up and give every drop of my blood to my son to save him. The things you remember sometimes are unbelievable.

I had booked to donate blood that day at 5 pm with a friend, which is why I had to pre-record the interview. The interview aired as I was driving to make my donation and so many people in the clinic told me they heard it on the way over, too and it made them feel great to be donating at that time for people like Ollie. As it turned out a handful of my friends who had joined our team were there at the same time donating. I was super touched by their generosity and so thrilled to see Marie- France, Connie, Jenn and Jamie there! 

Photo description: Ollie wears a Canadian Blood Services hat and sunglasses while holding a Canadian Blood Services/Hockey Gives Blood mini hockey stick and puck on his one year anniversary of his stem cell transplant.

The staff at Canadian Blood Services were wonderful and sent me home with a big bag of treats and Canadian Blood Services merchandise for Ollie and Abby.

Since then I've had messages from a bunch of folks saying they donated in Ollie and Abby's honour recently and a few of them were even first time donors! My friend Jenn made her first allowable donation 5 years post breast cancer for Ollie! These were all high points of the emotional roller coaster over the past few weeks. I have the best people in my life!

Photo description: Ollie eats a piece of his #OlliesPizza from Gabriel Pizza to celebrate his transplant anniversary.

My emotions were also yo-yo-ing a lot over the past few weeks as I attended the online funeral of an old friend's husband two days before our rampant anniversary. My dear friend had been one of the first to reach out to me when we shared the news that Ollie had been diagnosed. I've known her since high school and she, her husband and myself were all in Ottawa for university. Her husband was battling cancer and had been for a few years by the time Ollie started his journey. She had a lot of advice to survive it all and throughout the past two years we've been in touch to update each other on significant developments. She'd told me at the beginning of the month that he was palliative. They have two children close in age to Abby. That triggered my sorrow. 

It's not that I'm close to her husband - I actually haven't seen him since university. It's how cancer robs a family. How every member suffers and is deprived of their joy for so long. How those kids had to watch their dad deteriorate and lose him. How my dear friend lost her partner (first emotionally/mentally due to the stress of it all and then physically, too) and spent almost 5 years of her life trying to save her family.

Photo description: Ollie smiles and gives a thumbs up white sitting at the table. A vanilla cupcake with sprinkles and a lit candle sits in front of him to celebrate his transplant anniversary.

Then the week after Ollie's anniversary, I heard from a friend who used to take care of my grandma when she lived at a retirement home. She told me she was looking at photos of that time and found some of Grandma that she thought I'd like. Through the course of our chat, it came out that she was going through the old photos for the mother of her former colleague and our mutual friend who had passed away suddenly of cancer in February. 

This woman was among the kindest people I knew. We became good friends over the years since she took care of my Grandma. She was at my Grandma's funeral and hugged me so tight and told me so many beautiful stories about her and how much she loved her. When she found out that Ollie was sick she sent me beautiful messages of encouragement and told me she knew my Grandma was in heaven lobbying God to let me keep my boy and how proud she'd be of me for the mother I was through such difficulty. She sent a superhero package with gifts to my kids last year just before transplant. 

I hadn't heard from her since late fall, but hadn't thought anything about it because many people who had been following us online grew quieter as things became more stable for us over the past year. I was honestly gutted to hear that she'd been diagnosed on Christmas Eve with ovarian cancer and passed away 7 weeks later. Few people knew she was ill. When I heard the news all these months later I was devastated. I was sorrowful and angry while begging God to help me to understand why innocent and kind people must suffer this way. Why do families have to go through this?!

Photo description: Ollie sits at the table with Mario after blowing out candles on his cake to celebrate his one year anniversary of transplant.

I'm doing better now, but I wasn't alright for a couple of weeks. My therapist says that anger is a normal part of the healing process after the trauma of cancer and my usual positivity and proactive nature will keep coming back, but it's important to feel these big feelings. 

Anger is my least favourite emotion and makes me feel out of control. I hate that feeling and yet a good part of the last two years I have felt that way...tightly wound with my sanity ready to snap at any point without warning. I've talked a lot recently to other cancer moms and know this is all "normal" for us, but still hard for each and every one of us nearly every day. 

Photo description: Ollie sits at the table in front of a Braille version of the game Scrabble and feels a Braille Scrabble tile for the first time.

There have been good days and high points interspersed among my bad days. The interview I did for Healthing.ca finally got posted. This was timely as it promotes donation of all blood products and these are desperately needed right now as surgeries and procedures resume after lockdowns.

We also saw the endocrinologist and Ollie's bone density and hypothyroidism issues are improving (slowly). We have scans again in about 6 months. In the meantime he stays on the hypothyroidism med, doesn't need the osteoporosis injections and cannot use trampolines or go horseback riding.

Photo description: Dawn, Ollie and Mario sit in a darkened movie theatre wearing masks while Ollie holds a huge bag of popcorn.

Another highlight was taking Ollie to the movies. Ollie was having cabin fever and begged me to see if we could safely go to the movies. We haven't been in two years since just before he got sick. 

I checked out COVID protocols and was happy to see I could book seats and everything around them would be blocked off automatically. Also figured Sunday night for a kids movie (the new Boss Baby sequel movie) wasn't likely to be a big draw. 

I discovered that most new movies now have audio description (marked as DS or Descriptive Service in movie ads) thanks to a lawsuit in the US where blind people sued the studios forcing them all to start providing audio description that narrates the details and context a blind person needs to understand what's happening on screen. Not only do studios have to provide audio description tracks, but theatres over the past six years have been equipped to have blind patrons use a special headphone and transmitter to provide the audio description in every theatre for free.

Photo description: Dawn holds a small black transmitter and headphones in her hand that read, "Fidelio". This enables bind and low vision people to use the descriptive audio service in movie theatres.

We went to the 7 pm movie with Ollie. There were three families sitting rows apart in the entire theatre. We bought a gigantic popcorn (we did once order movie popcorn to our condo in Toronto as a treat during transplant there!). We kicked back in the recliner seats. The movie started. The boys were enraptured. 

I sat in the dark and silently cried for the first 5 minutes at the blissful normalcy (despite masks) of it and with the joy of knowing that there is a technology that will allow my blind son some enjoyment of a normal activity. 

My heart was full and I enjoyed that silly overpriced movie more than any other I've ever watched. Grateful. Thank you science and innovation.

Photo description: Ollie stands in the grass at the dog park while commanding Buddy Dogs Hope (foreground) and June (background).

One afternoon we had a great meet-up with fellow CNIB Buddy Dog duo Connor and June at the Country Canines Playpark.The boys enjoyed the hour in a private dog run to keep them safe from COVID and to enable their dogs to run freely and have fun safely. I am always impressed by the CNIB Buddy Dog program and the fact that although these dogs didn't make it into the guide dog program, they are so well-behaved and responsive to commands even given by kids!

Photo description: Abby sits on the sofa with legs folded wearing a backwards ball cap and sitting beside Chewbacca the cat and CNIB Buddy Dog Hope.

Ollie was in his school's playground about a week ago getting re-familiarized with everything now that he's blind and hasn't been there in almost two years due to cancer, stem cell transplant and COVID-19. 

He walked every inch of the yard with his white cane to remember every tree, bench, basketball poll, soccer goalpost, door to the school and playground. At times it was frustrating for him to be back in a place he once felt so comfortable in and now needs to re-learn. 

Lots of patience from his vision loss consultant and many mama hugs later he got it done and even took a swing on the monkey bars. He was delighted to see he'd grown so much in two years that he could even reach up and grab them from ground level!

Photo description: A masked Ollie stands on a raised platform reaching for the monkey bars in front of him in his school's playground.

So ultimately despite the sadness and anger, most of our days were filled with happiness and excitement. My cup really is always at least half full.