The Brave Boy and Clowns at CHEO

Monday, 6 September 2021

Education vs. Ignorance

This week like so many others my children go back to in person school. Abby for the first time since March 2020 when the pandemic hit and she went into online learning and next month would mark two years away for Ollie as we basically pulled him out when his intensive testing to get to diagnosis began in October 2019. I'm trying to remember what it felt like to send them both off into the world with no significant fear. I had no idea how our entire life was going to change in mere weeks. The only indicator that anything was wrong was a small bump on his neck that we still thought was a little infection. Maybe that's why I'm so scared now - because I know how it can all change in a moment. 

Photo description: Then 7-year old Ollie and 11-year old Abby pose on their front porch for their last back to school photo in September 2019, before cancer diagnosis and COVID-19.

We've debated long and hard what to do about schooling this fall. On the one hand we know that the kids want to go back and need socialization and "normalcy" for their mental health. On the other hand Ollie is still technically immuno-compromised. Even though he's been strong enough to stop his anti-viral medication and have all of the non-live vaccines to-date, he remains at some level of risk for COVID-19, Measles, Mumps, Rubella and Chicken Pox. The oncologist felt that all but COVID were manageable/minimal risks given childhood vaccines are mandatory for kids to attend public school (unless they have a medical exemption like Ollie currently does for the MMR and Varicella vaccines) and we don't often see outbreaks. 

 Photo description: Ollie hugs his famous stuffy Llama Llama Blue Pajamas and holds Dawn's hand while a CHEO nurse on each of his sides gives him one of the 10 doses of childhood vaccines that he has received again post transplant since February 2021.

Three years ago there was a measles outbreak in the schools causing Ottawa Public Health to crack down and start requiring that parents report their children's vaccinations or be suspended from school. Last year when we got back from transplant there was a chicken pox outbreak at CHEO (nearly gave me a heart attack). Nevertheless the oncologist assured me that for anything other than COVID if Ollie is exposed and we get him to hospital quickly there are treatments we can give him to keep him safe. The same cannot be said about COVID-19. She said, send them back, but watch the numbers and if they rise or there's any at his school, pull them out.

I know this is also a happy moment for them - a milestone - but I've lost a lot of sleep, ran every scenario through my head dozens of times and cried so many tears of frustration and fear. Part of this is the fear of him coming into contact with one of these illnesses. The other part is the fear of returning to "regular" life and somehow the cancer comes back and we're back to battling. You see, it's easier to keep wearing the armour than to take it off, get used to living without it and possibly have to put the heaviness of it all back on again. I think this might be how medical workers battling COVID-19 are feeling right now, too during this fourth wave. 

Photo description: A cheerful Ollie gets ready to play Beyblades in his playspace after an orientation visit at his school last Friday with his English teacher, Vision Itinerant teacher and Educational Assistant. 

I've also been with him almost every single day (minus the 3 days I had to take Abby to Toronto for her stem cell donation medical assessment and Mario stayed in hospital in Ottawa with him) of the past two years. I've been his mother, his coach, his caregiver, his playmate. I am the keeper of all Oliver medical history (his doctors generally ask me to explain history or point them to the right time in his massive medical chart) and I am the coordinator of his whole life. Keeping him alive and my family intact has literally been my whole life these past two years. I am on the precipice of big changes in my life and my future as his begins again. Also a milestone and cause for joy, but PTSD remains and I now stress more about making plans for the future. Oh the irony of a former strategic planner being afraid to plan! This is all way harder than leaving Abby or Ollie for their first day of daycare or school!

 Photo description: Ollie drives a Little Tykes car while ECE Silvia talks to him on his first day of daycare in 2013. His sister had been with Silvia for the 4 years prior, so Ollie had known her since birth making his transition and mama's pretty easy.

I have zero qualms about leaving them at their schools with the amazing teams there. Ollie's (and Abby's former) school had no cases of COVID last year. A testament to the community and staff's efforts to keep our kids safe. Also, staff and families at his school have helped enormously to get Ollie well and support us these past two years. The principal and her staff are arguably the kindest and most committed team of educators around. We honestly have a dream team around Ollie this year including incredible English, French and Phys ED teachers, and an incrediblly patient and committed EA (who messaged me last year when Ollie went blind and told me she'd get started on learning Braille in hopes of helping him when he got back!) who we know thanks to our 9 years at St. George. Every one of them and so many others at the school sent food to our home to nurture our family, participated in prayer circles, loved and cared for Abby and followed us online when Ollie was sick.
 Photo description: A recent tweet from St. George School sharing a Kids Kicking Cancer fundraiser promotion with a photo of Abby and Ollie and calling them two of St. George's heroes.

We also have an amazing vision itinerant teacher (who was the first person to reach out to me about getting Ollie into the vision program in June 2020). Also on our vision itinerant team are excellent Orientation and Mobility and Daily Living Skills teachers who will each work with Ollie once a week to help him to continue to learn how to navigate his world blind. Finally, we are blessed to have an occupational therapist, a physiotherapist, a child psychologist and our dependable POGO Interlink Nurse Graham from CHEO also on the team. All of this is mainly because of the blind/low vision program, but also because of his cancer. We are so grateful for the supports available.

Honestly what more could I ask for?! And I asked for a lot and got it all and then some! So you can see he/we will be well supported and I know how invested they are in helping him thrive and stay safe this year. More tears from me, but these ones are of gratitude.

 Photo description: Abby and her dearest friends from St. George gather to catch up before returning to middle school while masked and sitting on top of the monkey bars at their former elementary school. 

On the Abby side her wonderful resource teacher at her new school who tried to help from afar last year had her in for a tour of the school last week, told her what class she was in and how things would work. We also got to see our dear friend Eleri who teaches there and assured me she was there for Abby, too if she needed anything. This set my tender heart more at ease. More amazing educators and nurturing women to help my kid. Thank God for the village. 

On a different but related more, education is so needed in this country right now to combat the ignorance of the anti-vaxxers and fear mongers. I have been reading about how anti-vaxxers and people who are anti-vaccine passport are protesting at hospitals all across Canada and blocking access for critically ill and cancer patients, families going to pay their last respects to a dying family member, women arriving in labour, paramedics bringing in accident victims, etc. It even made it into the New York Times. And the worst part is some of the protesters are medical staff!!! I'm upset. No. I'm appalled and angry.

 Photo description: A screenshot of an online article from News1130 City News in BC. The photo is of unmasked angry anti-vaccine and anti-vaccine passport protesters in front of a hospital/cancer centre. The headline reads "B.C. cancer patients forced to walk through mob of protestors to get to appo..."

I have had to bring my cancer kid into 4 different hospitals' emergency rooms, for clinic visits, for chemo admissions and radiation treatments over the past two years. Every single time it was hard. Gut wrenching often. On most days I was super anxious and had to put on my emotional armour just to walk through the door. If I had had to walk or drive through protestors who could further endanger my child's life, I may have killed someone. And I am not a violent person, but you have read about me going mama bear to save him. I'd do literally anything to protect my family and especially my son who has endured too much pain and sacrifice during his battle with cancer and recovery from stem cell transplant. 

This is not okay behaviour, Canada. Peaceful protest is one thing. Willfully blocking people battling death from their lifesaving treatments, shouting at them and spitting at them (especially during COVID, but really anytime since their infection fighting neutrophils are low during treatment) is NEVER okay! I am past the point of trying to give people like this any benefit of the doubt about their intentions or freedoms. This is mob mentality pure and simple and does not belong here (or anywhere really)! Please be human beings not monsters like this!!!

Photo description: The flag raising on September 1st, 2021 at Ottawa City Hall for Childhood Cancer Awareness Month. Mayor Jim Watson speaks at a podium while Jocelyn Lamont, Executive Director of Candlelighters Ottawa and 10 cancer kids and their siblings join them. Ollie and his CNIB Buddy Dog Hope are near the end on the right.

Last week I stood beside Ollie at City Hall during the Candlelighters Childhood Cancer Programs flag raising to mark September as Childhood Cancer Awareness Month. I stood among cancer families who have had unimaginable things happen to them while they battled their child's cancer for YEARS. I was teary as each child there who is a survivor or sibling of a child with cancer took their turn cranking the flag up. I was completely choked up when Ollie was the last to raise the flag with our patient mayor's help. It felt like planting the victory flag after a hard battle won. Just like war. Innocents. Kids who should be able to just be kids and not be aware of childhood cancer and suffering at all. Do they or others like them deserve to face angry mobs to survive?! 

 Photo description: Ollie takes his turn at the flagpole cranking up the flag with assistance from Mayor Jim Watson while Dawn, Hope and other kids stand nearby. 

As always, Jesus was right. The little children will lead us if we let them. They learn hate and mistrust from adults. It's not natural for them. They are pure of heart. They are accepting of differences and more tolerant than we are. They are always willing to help. This fall, let's all be like our brave children who just want to be well and go back to school. Ollie just wants to be with his friends and learn. He and so many others like him who have fought critical illnesses know too much about the world's agony and ugliness already. They survived it all and still want to rejoin the world with positivity and happiness. 

 Photo description: Ollie lines up a putt at a mini golf course in Ottawa while enjoying his last days of summer vacation. With a lot of verbal feedback given his blindness and some help navigating between the holes, he did very well.

If everyone does their part to keep each other safe, we can all get back to what we loved about our pre-pandemic lives. We can remember what makes life worth living. 

Send me (and Mario and Abby) your strength and prayers to help our courageous boy re-enter life without further anxiety and fear. We've had enough. Be like my brave Ollie and find the joy even during times of uncertainty. Wishing everyone a safe back to school (if yours haven't gone back already) and fall.


Saturday, 21 August 2021

CNIB Lake Joe: Choose Your Own Adventure

Photo description: Ollie wears a yellow CNIB Lake Joe t-shirt and a mask while holding his white cane and Hope's leash while Hope sits at his feet wearing her CNIB Buddy Dog vest on the boardwalk

Summer sleep-away camp camp is a childhood rite of passage for so many. It's one that Ollie has been looking forward to for 3 years since his older sister was able to go to sleep away camp at age 10. None of us anticipated that over the past two years even this experience would be sacrificed (at least for Abby) due to cancer and COVID-19.

Then when Ollie got cancer and went blind it seemed like another thing he'd likely never experience. Although there are camps for kids in active- and post- cancer treatment (Camp Ooch and Camp Trillium), we figured sending our blind son to a camp that was not equipped to accommodate his vision loss would be too dangerous and frustrating for him.

So imagine our excitement when we heard about CNIB Lake Joe! This is a fully accessible camp for people with vision loss in Muskoka. Not only is it for kids with vision loss, but also for adults and families of those with vision loss. 

Anyone who has ever attended has said that CNIB Lake Joe is a magical place. Days before we went for the second week of Holiday camp, we watched the AMI-TV special documentary about the camp called Ripples: CNIB Lake Joe. It certainly seemed to hold magic for many. After that Ollie was counting the hours until we went.

Photo description: Ollie, Hope and Dawn ride in the backseat of the van with Abby and Mario in front en route to CNIB Lake Joe in Muskoka.

Typically they run 8 weeks of camp each year (3 for children/youth, 3 for adults and 2 for families). Given COVID in this, their 60th anniversary year, they decided it was an opportunity to go back to their original roots and run three weeks of holiday weeks for families. Billed as "Choose your own adventure" weeks with incredible COVID protocols it seemed an excellent opportunity for us to learn about the camp, what Ollie can do with vision loss and what we can do to help him to continue to do fun things with our family.

Photo description: The CNIB Lake Joe Welcome Centre with Lake Joseph in the background.

During week 1 they welcomed more than 40 families. When I heard this it made me a bit nervous. However, given everyone had to have a rapid COVID test upon arrival, daily health declarations, contact tracing at each activity, distancing, masking and hand sanitizing, we felt that it would be worth the risk and simply hoped that our week would be a little less busy. Fortunately our week had only 8 families registered! It certainly felt like the universe (God) was watching out for us and making it possible for us to have a safe week together after all we've been through the past two years.

Photo description: Two cabins at Lake Joe facing the lake with grass between them.

We arrived Monday late afternoon after a relatively uneventful 5 hour drive. We drove through Algonquin Park, which was a first for the kids. Hope was a great traveler, too.

The weather forecast had predicted a lot of rain and thunderstorms so we went equipped for bad weather with many hopes and prayers for at least some good weather. In the end we completely lucked out in that we had a few showers and storms, but those were short-lived. After a short shower or thunderstorm the sun would come out and we'd have a brilliant day or we'd have an amazing day and it would rain at night! Overall we had beautiful warm days that were perfect to be outdoors and enjoying water sports!

Photo description: Signage beside our room in Cabin K (also known as King Maples) with the room number in large letters and in Braille. Qwerty codes are also used for low vision people to use their phones to identify where they are.

The camp has an incredible design and layout to make it completely accessible and as safe as possible. The Welcome Centre and Dining Hall are basically central to the camp and all buildings and activities are joined by either a boardwalk with railings or cement walkways with railings or fences where needed to ensure safety where there is terrain of varied heights as well as along the water/beach. 

Half of the cabins are lakeside, and all are connected to each other and main buildings via a continuous accessible boardwalk and railing. Cabins are all named and laid out according to the alphabet to make them easier to find. Braille signage is everywhere for blind campers and large writing for low vision campers. The layout was so innovative as far as accessibility is concerned that when they did a major renovation of the camp in the early 2000s, they kept the same layout and simply replaced the old wooden buildings.

Photo description: A screened in porch at the end of a cabin at CNIB Lake Joe.

At the end of each cabin is a porch. A great place to gather (during non-COVID times) and to hang your wet clothes to dry every night! In every porch there is a tactile map/model of the camp.

The rooms are all a bit different (we had two the same with an adjoining door), but remind one of a university dorm room, except the mattresses are more comfortable and each has its own bathroom with a shower.

Photo description: A Lake Joe room with twin beds with duvets and two small chests of drawers. There is an adjoining door that can be used to connect two rooms.

The entire facility is way more modern and upscale than any camp I've ever attended. The cabins were rebuilt in the early 2000s and the main buildings have been upgraded over the past few years thanks to the generosity of donors and granting organizations. In fact, Lake Joseph is best known for being the summer playground of the Canadian rich and famous (a few of those with "cottages" on the Lake include Kevin O'Leary, Richard Ivey, Cindy Crawford, Kenny G and formerly Ann Murray) and many of Lake Joseph's summer occupants contribute to CNIB Lake Joe.

 Photo description: Mason wears a mask while holding a white cane and holding the leash as Buddy Dog Hope sits at his feet.Ollie wears a mask holding his white cane and resting a hand in Hope's head as they stand in front of the fence along the swim beach at sunset.

Now let's get to the fun stuff...what we actually did all week! I should preface this by telling you that of the eight families there last week, only two had kids. Ours and another family with an 11 year old boy named Mason who brought along his mom, grandma and baby sister. Mason was a super sweet and polite young man and we all enjoyed getting to know him and his family.

All campers were lovely. It was an interesting blend of our two families with kids, a husband and wife, a mother and daughter, a few singles and a single with caregiver. And the camper to staff ratio was incredible since there were so many staff and so few campers. At all times the kids had the undivided attention of multiple lifeguards and counselors as they did all activities, making it a super easy vacation for the parents! Of course, normally the camper to staff ratio is pretty good from what I understand.

Photo description: Abby holds Ollie's hand as they wade into the water at the swimming beach while accompanied by a lifeguard on their way to do a swim test. A second lifeguard sits in a tower chair in the distance while Mario wades in nearby.

Naturally the boys gravitated to each other and formed a lovely friendship over the course of the week, inspiring each other to try new things.  CNIB even asked us if they could tell Ollie and Mason's camp story as a precursor to a big fundraiser for the camp that they were having at the end of the week. You can read a bit about this dynamic duo here.You can also learn more about Mason and his Buddy Dog Queenie here.

Photo description: Mario and Abby in a paddle boat on the lake.

Like most summer camps Lake Joe has lots of opportunity to spend time on the water. With their beautiful sandy beach and sand bottom swimming areas, everyone enjoys swimming and jumping off of the lillypad. The kids swam every morning and often in the afternoon, too. 

Photo description: Ollie tries a single kayak for the first time as Mason kayaks with two lifeguards nearby in the background.

The kids were not bored a single moment that we were there and we all unplugged from our cell phones to truly enjoy every moment (other than me taking these photos of course as I would feel naked now without a camera to document our family's incredible story).

Photo description: Mason and Ollie paddle on the lake in a tandem canoe with a Lifeguard nearby.

Each day there were a variety of activities available to try:
- Peddle boats
- Kayaks
- Canoes
- Stand up paddle boards
- Sailing
- Pontoon Boat rides
- Waterslide
- Rock climbing
- Archery
- Lawn games
- Tandem Biking
- Shuffleboard
- Basketball 
- Arts and crafts (painting, pottery, tie-dye, etc.)

 Photo description: Dawn and Ollie sit astride a red tandem bike while wearing bike helmets at CNIB Lake Joe.

The REC Centre is a beautiful building with arts and crafts, an incredible hang out space with a comfortable sofa,  ton of beautiful instruments for the kids to just try and jam on and a sun porch with a pottery kiln and a special table game for blind and low vision people called Power Showdown. 

 Photo description: The REC Centre was a bright oasis of cool air and calm decor with its wooden ceilings, large sectional sofa in front of a tv surrounded by musical instruments on one half of the room and craft tables, supplies and cabinets on the other half of the room.

Power Showdown was part table hockey, part ping pong with a ball filled with beads for sound so the blind or low vision person can hear where the ball is. Ollie was great at it and loved to challenge anyone willing!
 Photo description: Ollie and a CNIB Lake Joe staff hold wooden paddles and play Power Showdown on a large yellow table with a raised edge and a wooden partition in the middle. The partition is high enough to ensure people will not be hit in the face with a ball and has an opening under it for the ball to pass through. There are nets at either end of the table.

In addition, the climbing wall was new this year and they are just completing a new artificial soccer turf and the first fully accessible mini golf course in Canada which we can't wait to try next summer when we go again! 

 Photo description: Ollie wearing a helmet and harness on the new climbing wall at CNIB Lake Joe with cabins in the distance.

Photo description: Ollie on the lake wearing a life jacket while standing on a stand up paddle board and holding a paddle.

The general philosophy at CNIB Lake Joe is simply that blind and low vision people should try everything and be encouraged to do it independently with assistance as needed. They quite literally put these kids in a kayak, on a stand-up paddle board or on a sailing catamaran and push them out with a bit of instruction. Lifeguards are always on hand nearby. When they send you out canoeing or sailing there are always two staff in a little motor boat nearby in case you need assistance or a tow in. 

Photo description: Ollie paddles at the front of a canoe on the lake with Mason riding in the middle and Dawn not pictured paddling in the back. In the distance you can see CNIB staff in a small motor boat monitoring those canoeing and sailing.

Ollie literally tried everything, often encouraged by Mason's bravery to try an activity, too. It was truly the first time in two years that Ollie was excited to be more independent and do things with little assistance from mom and dad. 

In particular, Ollie was really good at stand up paddle board and kayaking, which came as a surprise as I imagined his balance would be a challenge with the blindness. I should have known better than to underestimate my incredible boy.

Photo description: Dawn, Abby, Mario and Ollie get ready to go sailing in a catamaran boat on Lake Joe. 

Ollie's appetite was great all week and he actually tried a variety of new foods. Typically at home he still gravitates to the things that he knows taste good despite the changes to his taste buds from chemo, radiation and drugs. His willingness to try new things at camp was partly inspired by the knowledge that if he wanted to go to kids camp without us next summer, he'd need to learn to eat whatever was being provided in the dining hall. 

Photo description: Mario, Ollie, Abby and Dawn in the Dining Hall at  breakfast. Ollie was thrilled to feel that our table sign had Braille that read our last names and table number. 

While we brought a cooler with snacks and food just in case he wouldn't eat much that was provided, we assured him that going to camp like a big kid means no mommy and daddy cooler comes with you! He was also so active every day that he was hungry and way more willing to try new foods. The tables were spaced way more than 6 feet away from each other and we took many meals outside to enjoy at a picnic table, too.

Photo description: Ollie and Mario at the tiller while sailing in a catamaran boat on Lake Joe.

Sailing was pretty much the only activity that Ollie wasn't thrilled with, although the rest of us enjoyed it and laughed a lot at Ollie's regular exclamations that we were "lost at sea" and would never get back to shore. I'm afraid the pace was a little too slow for our active boy who prefers the thrill of fast moving activities. It was blissful for the parents despite the complaints, though!

Photo description: Ollie sits atop the waterslide on the dock at the boat house waiting for his turn while lifeguards and CNIB staff look on.

Even when he was nervous to try something like the water slide, he would dig deep into his incredible reserves of bravery and do it anyways. As always after doing the scariest things he declared the fear conquered and went down the slide many more times and a second day after that, too. He always teaches us so much about finding inner stores of courage when we are uncertain if we can do something that scares us.

 Photo description: Monique Pilkington, Executive Director of CNIB Lake Joe, CNIB Buddy Dog Hope, Ollie and Mason meet in front of the lake. Monique holds Hope's leash while Ollie and Mason hold their white canes. 

The Executive Director, Monique Pilkington happened to be there at the end of our week for a CNIB Lake Joe fundraiser that was happening the day we left. She had heard about Ollie, Hope and Mason and came over to meet them and talk to them about what a great week they had. She thanked us all for allowing them to share the boys' story to assist in promoting awareness and fundraising. It is always our pleasure to encourage others to help us to give back to such incredible organizations that help families like ours. In the 18 months since Ollie went blind, the CNIB has been a true light through the literal and proverbial darkness that we've all navigated to get to a point of acceptance of Ollie's blindness and to help us learn how exceptional and capable he is.

Photo description: Mario, CNIB Buddy Dog Hope and Abby all wear life jackets on the pontoon boat ride on Lake Joe. Hope borrowed CNIB Ambassador Dog Willow's life jacket and was excellent on the ride!

Considering that Hope has body sensitivity issues and is a water dog who doesn't really like to get wet, she wore the life jacket without complaint, was completely calm during the boat rides we took and liked to hang out near the waterfront even if she never went in the water herself. She was excellent all week, attending meals and events with us and patiently lying at Ollie's feet as we ate, did activities or talked to people. This was our first
 real opportunity taking her out in public given COVID and it affirmed that her guide dog training remains ingrained in her even if she is not an official guide dog. Monique told us she thought Hope was the first Buddy Dog to attend the camp. Given how much Hope impressed her and others, we know she's helped to confirm that allowing all CNIB dogs at camp is a good idea. Ollie also walked Ambassador Dog Willow on leash while we were there and she remembered her training well, too, easily responding to his commands even though she did not know him. Both the Buddy Dog Program and the Ambassador Dog Program are run by the wonderful Miriam Mas who gave us our Hope.

Photo description: Ollie and Dawn wear life jackets and smile wide on the pontoon boat ride with the perfectly blue lake and sky and beautiful green forests in the background.

I think my personal favourite activity was tubing. The tube was a far cry from the tiny round tubes of my youth that we'd easily bounce off of into the cold water and have to try to climb back on when the boat came back to pick you up. This was riding on a bouncy sofa. The kids and I went first and I cannot remember the last time I laughed that hard. There were big belly laughs from all of us and regular screams as we bounced around. Abby as the lightest bounced highest, while the mama bear in me still worried about Ollie's reduced bone density in his back and asked him began laughs if he was okay. I wouldn't let them go as fastbas they really wanted to out of concern for Ollie's osteoporosis and wanting to ensure he didn't bounce too much or too hard. 

 Photo description: Mario, Ollie and Abby get ready for tubing on a huge colorful tube that looks like a large chaise sofa for 3 with many handles, while CNIB Lake Joe staff and lifeguard assist.

My kids are definitely more like mama on rides and like the excitement and adrenaline. Their ride with daddy was even tamer as he's not a big fan of rides and was nursing a sore leg that he didn't want to exacerbate.

 Photo description: Dawn, Ollie and Abby are pulled in the tube behind the boat as CNIB Lake Joe staff drive the boat and spot. 

Overall we had a blast at Lake Joe. Even the sceptical teenager who had texted friends on Monday night to "rescue" her was by Wednesday telling me how much fun she was having and asking about whether she could one day be a counselor in training and/or a counselor there. The coolest thing was most staff at the camp seemed to have some personal connection to a blind or low vision person or were one themselves. Some were children or siblings of someone with vision loss and had come as kids themselves, just like Abby. This seems to me a beautiful way to teach future generations about accessibility issues and accommodation and to help them to teach others about how to handle vision loss.

Photo description: Mason, CNIB Buddy Dog Hope, Ollie and CNIB Ambassador Dog Willow have a doggy "hangout" date in the dog run at CNIB Lake Joe. Guide Dog Abby and camper/her handler Julia also participated, but are not pictured.

 Photo description: Our Abby and Abby the Guide Dog sitting in the grass waiting for Abby the Guide Dog's handler Julia to finish rock climbing.

I loved the open and honest conversations with other campers about their vision loss stories and they gave me many ideas and tips to further help Ollie. They were touched by Ollie's story and so positive about how well he and all of us were adapting to his new world considering how new we were to it all. There was a feeling of  camaraderie and a lack of judgement among this group. They cheered each other on and were so kind to each other. That's the thing I notice most in this community - empathy and compassion. A feeling that we're all in this together. That they treat each other as they want to be treated. Like the accomplished, capable and "normal" people that they are. Like Ollie I honestly felt at home among this community, the same way that I now feel kinship among other cancer and transplant families. Ultimately Maslow was right and we all just want to belong.

Photo description: An exhausted CNIB Buddy Dog Hope sleeps on Mario's shoes on the floor in our room at CNIB Lake Joe, too tired to move after a busy day of fun.

These are our people. We are blessed to have many people on this ongoing journey with us and are proud to count the CNIB Lake Joe people among them as well. We cannot wait (all 4 of us agreed) to go back to CNIB Lake Joe next summer and are so grateful to have had this opportunity during their 60th anniversary summer.

Friday, 13 August 2021

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 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.

Education vs. Ignorance

This week like so many others my children go back to in person school. Abby for the first time since March 2020 when the pandemic hit and sh...