Clearing Scans, Passing Tests and Accessibility Stories

[Photo description: Mario, Abby, Ollie and Dawn pose in their backyard wearing huge smiles and holding Ollie's hands as they surround him with love. Photos were done as part of the annual #PhotosForPhoebe event in support of the Phoebe Rose Rocks Foundation that supported Ollie and family during his stem cell transplant. Photo credit to Anne-Marie Bouchard Photography who donated her time and talent in return for donations to the Phoebe Rose Rocks Foundation]

If you've been hesitant to ask us about the results of scans and waiting for us to share, so sorry to keep you hanging! The MRI got delayed by a week due to someone else's emergency. Ollie was upset by the delay at first, but I reminded him that we got bumped because his scans are just routine and that there have been times when he was the urgent case and we likely bumped other people to accommodate him at those times. 

We did have the CT as planned and the doctor was kind enough to call me after I sent an apologetic email on the third day when we hadn't heard, that I was having bad dreams that she was trying to reach me and couldn't and I couldn't stand not knowing anymore. She called and asked me how I was and I said, "I'm okay." and she teased me saying I obviously was not because she just got my email and knew I was stressing out! 😄 She confirmed that the CT was clear and unchanged from a year ago! That helped to ease my anxiety quite a bit, although I knew that the MRI would scan his brain where most of his persistent relapses have been.

[Photo description: Ollie wears a mask and holds a sprayer from a garden hose on Hope 

who looks unimpressed as he gives her a bath at our local Pet Valu DIY pet wash]

He had his MRI three weeks ago and it was anxiety ridden for both of us. I sat watching for an hour and thirty minutes with no clock in the room, no phone and nothing to do but think and fixate. So I prayed and took a lot of deep breaths. Pretty much for the entire time. I prayed for clear scans and patience and healing for us all. I prayed for our army of kind people who came through for us in every way. I prayed for all families admitted to CHEO at that time including our little friend Isaac who was just starting his last admission upstairs on 4 North. I prayed for every kid we have come to know or have known for too short a time before they were taken too young during our own two year journey. I prayed for those brave kids and their families who unfairly battled the unthinkable and couldn't beat it and I also begged God for those that have made it so far to be well. For their families to know joy and normalcy again. And for my son never to have to ever again face death during my lifetime and well beyond.

[Photo description: Ollie sits at the kitchen table making a homemade 

pepperoni and green olive pizza.]

Ollie was great until they had to put his needle in to inject the contrast. He always hates that part. The technicians were as always terrific, but they did end up having to do extra scans of his back, so that took longer and by the end he was hollering at them to get him out before he lost it. By then he was tired, hungry, frustrated and his ears were hurting from the headphones. I honestly don't know how we did these unsedated before when he was on steroids all the time and was angry and impatient! He is a total wonder!  

[Photo description: Ollie sits building Lego mini figures at CHEO while waiting for his CT scan and drinking the contrast. He has to drink 1 cup every half hour and 4 cups in total, so it is a two hour ordeal.]

We found out two weeks ago during his checkup with Dr. Abbott that the MRI shows there is no evidence of disease, so remains cancer free! Thanks be to God! 

The MRI did still show that some inflammation remains in his optic nerves, and it's been 21 months since he went blind! Thankfully they did get a clearer picture of where the damage is including the detached retina on the left that we already knew about and the tear on the right eye that the retina specialist at The Ottawa Hospital suspected. Ollie also had eye ultrasounds and a check in with this specialist two weeks ago, so this should help him to decide what surgery Ollie will need on his eyes in the coming months to clear out that blood from the detachment and the tear, to fix these issues and stop the growth of the new blood vessels from strangling his eyes. We hope to know more in a few weeks. 

The MRI also shows further deterioration in his lower spine and right hip, but again we are being followed by the endocrinologist and bone specialist who have done other scans this summer and are monitoring this. They'll be sent his MRI and consulted to see if we stay the course or may need to consider treatment (injections) to help increase his bone density. 

[Photo description: Ollie wears a mask, a hospital gown and hospital pants, sitting in CHEO imaging with his white cane while waiting for his latest MRI]

We also did a special blood test called the Minimal Residual Disease (MRD) test. MRD refers to cancer cells remaining after treatment that can't be detected by other scans and tests. These cells have the potential to come back and cause relapse.. I had heard of this through other ALCL parents in the UK and Europe and asked our oncologist to see if we could it, too. As with most medical tests it is not an absolute answer. When looked at in concert with imaging scans like an MRI and CT, it can be a marker for whether additional treatment is needed at this time or not. 

Dr. Abbott as always listened to my request to do this even though it isn't typically done in North America very often or in very many places. She took the information that I gave her about other experts in the U.S., Germany and England who do this, contacted them and arranged for Ollie's sample to be sent to and analyzed in Germany. They agreed to analyze his sample and provide results for free and he became part of an ALCL study there as well. We thought we'd have to pay out of pocket to have the sample couriered to Germany, but Dr. Abbott asked OHIP and they agreed to pay for the sample to be sent! It just reinforces what I've learned over the past two years - if you don't ask, you don't get. 

 

I got a brief call from Dr. Abbott during one of her exceptionally busy days this week and she confirmed that his test result was negative. Meaning no evidence of any remaining cancer cells in his body! This is great news, but as always we remain cautiously optimistic as it is no guarantee that if we did the test again in future it wouldn't be positive. It also causes us to have to think about what we do next as Ollie remains on an ALK inhibitor drug and at some point we need to decide if we take him off and see if the transplant and the drug have been enough to kick cancer out for good, if we stay the course and remain on the drug for the full planned 2 years or potentially reduce his current dosage to see if we can reduce his weight gain, water retention and ease some of the anxiety that the drug sometimes causes for him. 

We have friends in the UK who recently took their child off of the drug and there was a relapse within a few months. That said their chimerism never reached 100% after transplant with an unrelated donor. We also know another family with a child in the U.S.A. whose child went off of the drug 6 months ago after over a year post transplant with an unrelated donor and 100% chimerism and they are doing great. It is so difficult to be making rational decisions without adequate data and case studies to do so. Few understand what it is really like to be making life or death decisions for their child. You'd think we would be getting pretty good at it, but it never gets easier. We'll be having another discussion with Dr. Abbott soon to determine the way forward. As always, we will share more info when we can. 

[Photo description: Ollie stands in front of the skate park at The Yard wearing a mask, a helmet and safety pads while holding his white cane and his skateboard]

In other (less stressful) news, I posted on social media recently about Ollie starting skateboarding lessons at The Yard and how the owner was keen to learn from Calgary's ALT Route accessible skate park project to help find safe ways for Ollie to skateboard, too. Anthony and Jordan at the Yard are good humans who just wanted to help give a blind cancer/stem cell transplant survivor kid a chance to do again what he once loved. 

I'm going to write a separate blog piece on how they're doing this with him soon, so stay tuned! For now you can imagine how happy this makes Ollie and how incredible it is for all involved to see him get back to something he is so passionate and fearless about. 

You should also check out this awesome documentary about ALT Route! 

[Photo description: Ollie and Hope wearing their CNIB gear visit the CNIB Canine Centre and greet an employee with the Canadian Animal Blood Bank.]

Recently Hope became another hero in our family (or perhaps just a bigger one since we already thought she was a hero for all she does to help Ollie) when she donated blood at a clinic organized by the CNIB Guide Dogs team at the CNIB Canine Centre in Carleton Place to help out the Canadian Animal Blood Bank. You never think about dogs needing blood in emergency situations, but they do, too and due to COVID their bank has been nearly empty until donor clinics have once again been allowed. COVID protocols were followed so we didn't get to be with her during her donation, but Miriam and Lucie at the Guide Dogs program were there to help her through it and she was so excited to see them again! She did great, donated an entire pint and is a universal donor! We are so proud of her! She also had a fun puppy playdate after as our fellow Buddy Dog duo Connor and June were also there at the same time. 

[Photo description: Ollie holds his dog whistle while Buddy Dog Hope sits at his feet and Buddy Dog June stands beside her waiting for a command.]

She and Ollie have also been invited to be part of the CNIB's float for the Carleton Place Christmas Parade on November 27th! Ollie is pretty excited about this, especially since it looks like we'll get to meet Ray (Hope's brother) and his handler at the parade! 

Hope and Ollie now have their own Instagram account (@cnib_ollies_hope) where we post shorter updates more frequently if you want to follow along there as well!

[Photo description: Abby sits on the sofa while a boom microphone hovers in front and above her during her interview for the new AMI-TV series We Are One]

We also agreed last spring to share Ollie's story of becoming blind with the Accessible Media Inc. (AMI-TV) team to be profiled in an episode of their new series, We Are One. Originally we were going to shoot it this summer, but COVID as usual delayed things and so we shot it just a couple of weeks ago. Interviews were done with us at home observing COVID protocols as we knew all crew members were double vaccinated. I think that the interviews are among the best and most honest we have ever given. 

 

[Photo description: Ollie and his skateboarding instructor Jordan walk up a ramp in the skate park towards a sign on the wall that reads, "The Yard" while the videographer and sound technician capture the moment.]

Chris Vallee is the host of the show and we "met" him online last spring because his story of overcoming an eating disorder as a teen thanks to a CHEO program was also profiled as part of the 2021 CHEO Telethon which Ollie was also featured in. He put us at ease right away and I felt grateful to have another CHEO success story telling Ollie's. Abby in particular responded so well to Chris. I watched her interview and was moved to tears so many times by the raw honesty that she displayed. As a teen now it's harder to be publicly vulnerable and I had given her permission and warned them that she may opt not to answer some of their questions if she preferred not to. As usual my children's strength left me in awe as she answered every question thoughtfully and purely as her best self. When Abby was done and she'd gone back up to her room to return to her teen life chatting online with friends, both the producer and the sound technician commented on how moving her interview was (and they see a lot of interviews). The crew was awesome and the sound technician later told me how much he loves working for AMI because of the compelling stories they tell and the amazing people he gets to meet like us! 

[Photo description: Ollie is second from the right with the ball while playing road hockey with friends Magnum, Will, James, Elias and Lewis in the school yard. The boom microphone can be seen overhead in the foreground.]

As part of the b-roll (fancy production speak for background images and video that they use as visuals while they use your voice from your interview over them) that we shot we took them to The Yard for one of Ollie' s skateboarding lessons, got some of Ollie's buddies from school together to play a game of road hockey (using his audible ball as he does at school) and they filmed part of one of Ollie's chess lessons with Josh. 

[Photo description: Ollie and Josh play chess masked in his playroom while the videographer and sound technician capture it.]

Abby, Mario and I are all doing well and keeping busy. Flu shots will be done for all of us as of tomorrow when Abby gets hers. It's heartening to see people going out and getting them more eagerly this year as a result of a heightened awareness of the need to take care of each other and trying to keep each other well and staying at work and school. 

As I reflect that on this day two years ago Ollie had his biopsy that would finally reveal what the bump was on November 19th, 2019, I am still brought to tears often by how much our little family has been through. Despite everything we are mostly happy, healthy and together. I am eternally grateful that we've made it thus far and so proud of all of us for working through it.  

Back to School

It's been an eventful few weeks. The kids are back in school and settling in  after many adjustments to being back in person for the first time since the COVID-19 pandemic began. 

 Photo description: Ollie poses with a big smile while holding his white cane on our front porch with his backpack at his feet on his first day of school for 2021-2022.

Ollie was so excited about going back that he woke up at 5:30 am the first day! As I snuggled in his bed with him hoping he'd go back to sleep for at least an hour, he talked to me softly. "Mom?", he said sweetly. "You don't have to worry about me today or be sad that I'm going. I'm so happy that it can't be anything but a great day!" My brave boy reassuring me because he knew how hard that day was going to be for me. Don't get me wrong - I was overjoyed that he was well enough to go back to school, but as with every milestone that we hit on the path to total wellness, it was overwhelming and reminded me of how much we've had to overcome to get to this moment that at times we were uncertain would ever be possible.

Photo description: Ollie and his vision itinerant teacher and educational assistant on the first day back to school in two years since cancer, blindness and stem cell transplant. Photo courtesy of Ollie's principal.

I took him and he was vibrating with excitement. No nervousness or fear at all. As we waited for his educational assistant to meet us we saw many friends who joyfully greeted us, most knowing how momentous this day was for us. They had followed our journey and nurtured us through it with frequent food and gift drop-offs, kind messages of support, financial donations and so many prayers sent our way. I held it together until Ollie and Mrs. Taylor disappeared into the school, then turned around and tears began pouring down my cheeks almost blinding me as I stumbled back down the path to my car. 

Through my tears I saw my friend Angie who is the office manager at school and goes to church with us. We've worked on fundraisers together and over the past two years she's had her own personal challenges, but she was always so supportive of us, even personally delivering things to the house for Ollie from school. She walked towards me with her arms wide open and enveloped me in the best hug as I sobbed. We were both wearing masks and we both felt that this was far more needed in the moment than the COVID caution we usually observe. It was the best hug and I was grateful for the empathy and compassion in it as I let go of so much pent up fear and uncertainty. 

 Photo description: Ollie plays road hockey with friends at lunch recess at school with an audible ball filled with beans. Photo courtesy of his educational assistant.

I don't even care that everyone watched as I had my break down. I deserve that after everything we've been through and endured. They all understood that and stood nearby in support. Many came up to me after to offer words of support and love. How blessed we are to have such an incredible village around us helping us to raise our child! He's doing great and has settled in nicely with few bumps along the way. 

 Photo description: Ollie plays basketball with a close friend at school. Photo courtesy of his educational assistant.

On the first day of school he had a moment of feeling left out as friends went ahead and played like they normally would inadvertently leaving him behind. Fortunately his kind E.A. helped him to problem solve and they went to find someone he could play with. We reminded Ollie that he'd been sick a long time and was now blind and the kids didn't know yet what he COULD do, so he'd need to educate and show them! Since then they play road hockey with his audible hockey ball, basketball with his jingling basketball and soccer with his beeping soccer ball. I've bought every adapted piece of sports equipment there is and they're worth every penny! His friends have been amazing at learning how to accommodate him by calling out who they're passing to so he gets audio cues to follow the ball, too. His teachers tell me how much they're all learning from him about accommodation and inclusivity and how well that will serve them all as they grow up. 

 Photo description: Ollie wearing a red hoodie plays soccer at school with friends using his beeping soccer ball. Photo courtesy of his educational assistant.

During rainy day recesses his friends take turns playing chess with Ollie on his tactile chess set and he delights in teaching them the new moves he's learning. He has a weekly chess lesson from a local young man who quickly rose to the challenge of teaching a blind kid and has gotten excited researching ways to make it easier for Ollie to learn and play. 

 Photo description: Ollie's hands on his tactile chess set to which we have added a Braille grid for him to learn the rank and file positions of the board. The white pieces have a little bump on top in order to distinguish the two colours and the black squares are slightly raised to enable him to distinguish each position on the board. We have one at home and bought another to send to school. You can also play checkers on this board.

Abby didn't start school until two days later and found the transition in the first days a bit overwhelming after 18 months of not having in person daily interactions with those outside of our family. She, too, has gotten more comfortable and happier as time has passed. 

Photo description: Abby poses on our front porch wearing a mask and her backpack on her first day of school for the 2021-2022 school year.

Sending them both back was the right decision despite the risks. We are grateful to both schools and all staff who have helped to make our re-entry a positive one. So far both have been safe, although Ollie did get his first cold post transplant after the first two weeks of school. We kept him home and watched him closely for COVID symptoms. He only had a sore throat and runny nose, so fortunately not COVID symptoms without accompanying fever and cough. I also kind of obsessively checked that he could taste and smell regularly and went in when he was sleeping to check that he had no fever or laboured breathing. We knew that there had been a few cases of colds in his class and that those kids had negative COVID tests, so I just kept breathing deep and reminding myself that if nothing else we've learned to triage symptoms through cancer and not jump to the worst conclusions every time. When the worst you can imagine has already happened to you, you tend to have heightened awareness of when things are normal and when they're not. 

So we booked the first COVID test we could for a few days later just in case, but the day before his test he was bouncing back and feeling better just 4 days in. By day 5 he was back in school and I was thanking God and Abby once again for his new immune system that has now been tested and proven to work well. Naturally from the stress, I got his cold within a few days, too. It's the first illness I've had in the 2 years since his diagnosis. My therapist says that's a good sign that I've let my body relax to the point where I allow myself to get sick. That it means that at least subconsciously my body and brain know that he's no longer in the same danger and that even if I get sick it'll be okay now. I guess I have taken the armour off or at least part of it.

I have been trying to strike a balance between spending time on processing my feelings about everything and getting things important to me done these past few weeks. Each day I spend some time walking Hope, thinking and praying, organizing medical appointments for myself and Ollie and trying to knock a few things off of my lengthy to-do list. After two years, there are so many things we've not had the energy to do around the house and I hope to take care of some of them before I go back to work. 

 Photo description: CNIB Buddy Dog Hope gives Dawn the "side look" while posing for a selfie during a walk along the Ottawa River. A beautiful sunset over a bridge on the river is in the background.

Ollie has CT and MRI scans coming up tomorrow and blood tests in mid-October. These are pre-occupying my mind at present and causing my sleep to be erratic over the past few days. He shows no symptoms, but it's been too long since his last scans and scanxiety is real and hard when you're battling PTSD. This is part of the new "plan" for Ollie that his oncologist and I have puzzled out together because there is no roadmap for relapsed Anaplastic Large Cell Lymphoma. But we are trying to remedy that, too. 

To that end I was asked by Ollie's Toronto oncologist to participate in a meeting last week with a Stanford University researcher and an American oncologist who is an expert in ALCL and head of the Children's Oncology Group (COG) ALCL Committee. We discussed outreach to ALCL parents to encourage them to participate in an ALCL relapse study. It's early days and will be a longer term project, but I am proud to have been consulted and cannot help but feel that it is a good step towards collecting information that could help to standardize relapse treatments in future. I am grateful to my ALCL parent friends around the world who are also raising awareness so that together we may make a difference for other ALCL families and spare them some of the fear of not knowing how to treat this in future. This makes me feel like all of the agony that we have endured may at least result in better outcomes for kids like Ollie in future. I am grateful to play a small part in positive change.

Ollie had a consult with the retina specialist at The Ottawa Hospital a couple of weeks ago. Turns out the retina specialist is married to Ollie's incredibly kind and brilliant radiologist so he already knew all about Ollie and our story. After examining Ollie he told us that he can see that blood has pooled behind each of his eyes. On the left side likely because of the retina detachment and on the right likely due to a small tear. He still has slight peripheral vision in that eye, although the blood is making it more difficult to see anything. The blood will need to be removed through a surgery. In addition there are new abnormal blood vessels growing (Neovascularization) that need to be stopped through a laser surgery. 

 Photo description: Ollie's eyes are examined by Dr. Dollin at The Ottawa Hospital Eye Institute.

He felt that even if we'd caught the retina detachment earlier he'd still have a very low chance of recovering any vision in his left eye given the extensive damage and with the passage of time due to COVID backlogs, there is no chance of re-attaching and seeing anything now. The pressure in his left eye is twice as high as it should be, so we need to reduce that and have been given eye drops that he takes twice a day for this. 

Essentially we need to keep his eyes healthy so that he can keep them both. That's the real goal now and if we can clean up/repair the right eye to keep any peripheral vision/light that he has, that's our hope. He also intends to consult with his glaucoma specialist colleague as he feels we may want to consider using some of their techniques to help Ollie.  The next step is that he has an ultrasound on his eyes in October 15th followed by a follow-up with the retina specialist. At this point they'll have a clearer picture and actual recommendations to move forward.

To be honest I was disappointed that it wasn't better news. Although I have accepted Ollie's blindness and didn't honestly expect any significant improvements in his vision, I had hoped re-attachment was the way we'd go to preserve the eyes. Ollie had a different viewpoint about the appointment, though. He said it was a good appointment and when I asked why he said, "They didn't say there was nothing they could do, Mom. Doing something and keeping my eyes is way better than them saying there's nothing they could do!" As always my brave, wise beyond his years boy surprises me with his hope and positivity. And if he can be okay with it, so can I. 

On the philanthropic front, Ollie participated in his school's annual Terry Fox Run/Walk recently. He told us he was walking for all of the friends that he had at CHEO who were still battling cancer. Most of his school friends and a few at other schools were walking for Ollie. I got the most heartwarming photos from parents we know of their kids wearing their Walk stickers which say, "I'm running/walking for:" and where they'd written "Ollie". So thanks to the incredible Terry Fox, my boy is continuing his legacy by inspiring others to keep raising money for cancer research. Giving and kindness are cycles we are so glad to be part of.

 Photo description: Ollie wearing a mask doing the Terry Fox Walk with his white cane in the school's neighborhood. Photo courtesy of his educational assistant.

I was also pleased to do a testimonial for the Department of Immigration, Refugees and Citizenship Canada last week for the Government of Canada Charitable Workplace Campaign (GCWCC). My friend Allison, with whom I used to work at Treasury Board asked me if I might speak at their event and highlight some of the many charitable organizations that have helped us. I was glad to have the opportunity to encourage others to give to so many worthy organizations and to do my part to remind public servants why we give - because it was our family this time, but could happen to anyone. You never expect to need the support of your community in this way, but are so grateful to have it when you need it. My testimonial seems to have been well received, although the Deputy Minister and Assistant Deputy Minister noted how emotional they found it and I can understand that as I am totally honest and open about it. By the end of doing these I typically feel like I have an emotional hangover. Why do it then, you might ask? Because someone needs to and because it is part of my healing process to get it all out and to try to create a legacy of good coming out of it all. And I'm tired of the stigma that we must hide away our feelings of sadness and anxiety. Why is it okay for so many to display anger openly these days over their disagreement with COVID restrictions and mandates, but still not okay for the rest of us to share genuine human emotion that may actually evoke the empathy that we so desperately need in the world right now?! And I always try to share my honest feelings including the incredible gratitude and wonder that we've felt over our son's survival and the kindness we have been shown constantly. I'll keep doing it as long as I keep getting asked and feel it may make a positive difference in the world.

We were thrilled to hear that Pfizer had submitted data to Health Canada this week as a precursor to their request for authorization of the COVID-19 vaccine for children ages 5-11. Ollie asks me daily if there's any news. He's waiting impatiently to get his vaccines as he knows it will be a game changer for us and finally allow us to live as normal a life as possible without the constant fear that he will get COVID and be seriously ill or worse. He desperately wants to be able to have regular playdates and attend birthday parties like a normal kid. To go out in public without us trying to keep him away from other people. To be able to hug people (still with masks on for a while no doubt) without fear. I want that for all of us, too. We're hopeful that before Christmas he'll have at least two doses and that maybe we can even see family and our closest friends then. We owe them all the biggest hugs after doing so much to help us save Ollie these past two years.

So wish us luck and send us your prayers for clear scans this week and good blood tests later this month. We'll update you when we can. In the meantime, have a happy Thanksgiving, but please be safe if you are seeing family and keep your gatherings smaller than normal to reduce the risk of COVID numbers increasing drastically after the holiday. 

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.

 

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

-Tubing

- 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.