All I Want for Christmas is a COVID-19 Vaccine and a Victrectomy...

[Photo description: Ollie sits in his seat in the van resting his hand on Hope beside him when being picked up from school. The red seatbelt cover has a Medic Alert symbol on it and inside contains details on Ollie' s medical conditions in case of an accident.]

It's hard to believe that we are now less than two weeks away until Christmas again! Getting everyone here into the Christmas spirit has been a bit of an uphill battle again this year, but we've slowly gotten there. 

[Photo description: Ollie sits on the sofa beside a sleeping Hope while playing with a tactile Mini Mini-Golf game on the ottoman in front of him. 

As usual, Ollie was most like me, so was actually interested in celebrating the holidays and helped me to drag Abby and Mario into the spirit. We decorated the last weekend in November - earlier than we ever have. Mario thought I was crazy, but went along with it and tried to get Abby into it. She was reluctant. Digging deeper by talking about things revealed that everyone is now reminded somewhat about Ollie being diagnosed this time of year and having those first rounds of chemo in the weeks before, during and after the holidays. No matter how far away we get from active treatment, there are constant reminders of what we went through in those early days. 

[Photo description: Ollie wears an elf hat and Hope wears reindeer antlers while a roaring fire appears on the TV screen behind them.]

We talked about reclaiming Christmas and trying to think more about how grateful we are that we're all together and he's well instead. It hasn't been easy and there have been arguments and tears to get past this PTSD, but we're getting there. Abby and Ollie are now getting excited that Christmas is almost here as evidenced by them trying to guess what their gifts under the tree are. 

[Photo description: Ollie adds coloured bulbs to the ceramic Christmas tree that was my grandmother's as we decorated for the holidays.]

When he has his moments, Ollie has this incredible way of being able to talk about how he feels when he's feeling big angry or sad feelings and then to just recover quickly after hugging it out and appreciating the good moments that follow. Hope helps him a lot with this process. He calls her especially when he is sad after his anger has dissipated and he needs to move from sadness to acceptance to readiness to be happy again. He just hugs her and within moments he feels ready to face whatever the world throws at him next. As his mama my level of gratitude and love for this gorgeous and sweet-natured canine (who honestly seems to think she's human) knows no bounds. She spends most of her days very close to me at home. Mario laughs that I was the one who didn't want a dog before Ollie went blind and she is now super attached to me and I to her. 

[Photo description: Ollie hugs Hope while sitting on the back of the CNIB Christmas Float before the Carleton Place Christmas Parade on November 27, 2021.]

So it was our great pleasure to be invited to participate in the Carleton Place Christmas Parade with the CNIB Guide Dogs Program and show our gratitude for being part of something so life changing for us all. Ollie was so excited to be part of it and showed incredible patience while waiting for the parade to begin. Hope was so well-behaved despite all of the distractions, especially with so many other dogs around. 

We met several other volunteers who boarded Hope during her time at the CNIB Canine Training Centre. They were all overjoyed to see her and commented on how wonderful she looked, how well-behaved she was, and how well Ollie was doing with her. They are all incredibly warm and kind people who open their hearts and homes to help train guide dogs for blind and low vision people. It's incredibly hard for them to love these dogs and then let them go, but they do it selflessly to make lives like Ollie's better.

[Photo description: The CNIB float for the Carleton Place Christmas Parade is covered in Christmas lights and featured a blow up Snoopy riding a scooter and a decorated Christmas tree pulled by a yellow, white and black CNIB Guide Dogs van. Dawn, Ollie (in orange coat) and Hope are sitting on the float with the program lead of the CNIB Buddy Dog/Ambassador Dog Program, Buddy Dog duo Connor and June with mom Julie and other CNIB volunteers. CNIB Dog Trainers and Guide Dogs in training walked behind the float. Photo courtesy of Allison Noseworthy Warren]

The parade was incredibly well attended with approximately 5,000 people lining the streets. On the one hand this made me grateful to be on the float safely isolated from the masses, but on the other I felt so grateful for this little bit of normal for everyone. Pretty exciting for a 9 year old to be in a parade and we hope to be invited to do it again in future!

[Photo description: Ollie is assisted by Mario and Skateboarding Instructor Jordan as he does his first blind standing ride down a half pipe at The Yard.]

I haven't written that separate blog post about Ollie skateboarding yet, but he's making great progress and it's fun to watch him do something he loves so much and I love the respect that other kids at the skate park show him when they realize he's doing it blind.

[Photo description: Ollie and his skateboarding instructor Jordan are interviewed by Denise Fung of CBC Radio at The Yard.]

 CBC Radio taped an interview at The Yard with him and Jordan yesterday, so listen this week for him on Ottawa Morning! 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Last spring, Make-A-Wish Eastern Ontario asked if Ollie would be willing to be part of the 24 Days of Wishes. Each day in December leading up to Christmas, a Wish kid is featured on Ottawa's CTV News to encourage people to donate to help make Wishes come true for other critically ill children in 2022. 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Ollie's Door Day was December 10th and you can watch the CTV News segment on him here. We remain so thankful for the Wish that he was granted in March 2021 to have an epic playroom and he has literally used it EVERY day since then. It really is the Wish that keeps on giving and he helped the sponsor of his Wish, eQ Homes to make a video to encourage others to help them to Wish It Forward to help another deserving kid in 2022. They just posted today that they met their $10,000 goal to make this happen, so we continue to be grateful to eQ Homes and their supporters who have helped to inspire kids like Ollie with critical illnesses to keep going through all of the hard stuff to get their Wishes.

[Photo description: Ollie gets his first COVID-19 vaccine from a CHEO nurse while stuffie Llama Llama Blue Pajamas is hugged for courage. This red and white shirt reads, " Be a changeable - #sgeochangemaker - St. George Catholic School"] 

On November 28, 2021, Ollie was psyched to finally get his first COVID-19 vaccine at CHEO! Honestly when CHEO called me to schedule it I was teary and when he got it I breathed a deep breath of relief. It's not enough yet and he's scheduled to get his second in January and will get a third after that given his transplant makes him higher risk for COVID, but it is an incredible first step towards all of us feeling less anxiety about him being out in public, including school. Ollie felt no pain (my arm after my booster last week hurt for 4 days, but he says he felt nothing!) and aside from being a bit more tired for 24 hours and asking to go to bed early, he had no side effects. 

I have tried to explain to the naysayers online who cry that parents are "torturing" their children by vaccinating them with an "untested" vaccine that they have no idea what really torturing your child is like. That putting chemo, radiation and truly untested in children drugs into their little bodies to save their lives is torture for them and for you as the parent. And all are in the interest of saving their lives. Just like this COVID vaccine is for Ollie. That both of my very bright and aware children BEGGED to get this vaccine in the interest of protecting each other and trying to live a more normal, less scary life. That if my then 12 year old daughter could legally consent (and she was physically and mentally assessed to ensure that she was okay to consent) to give her stem cells to save her brother's life, she and others like her are very capable of deciding to get a vaccine.  

A few of Ollie's friends who were nervous about the vaccine or scared of needles told us that despite this they were going to get the vaccine anyways because they could be brave like Ollie. And then they sent us messages celebrating that they had done it! Again and again people help us and amaze us with their kindness. To-date in Ottawa 50% of eligible kids have been vaccinated in the first three weeks of vaccination clinics and we are thrilled to live in this community where people take care of each other. 

[Photo description: Ollie sits in an pathology exam chair in an exam room at the Eye Centre at The Ottawa Hospital - Riverside Campus waiting to be examined by Dr. Dollin]

On December 1st, Ollie had another appointment with his retina specialist, Dr. Dollin at The Ottawa Hospital at the Riverside Campus Eye Centre. First time ever for us at Riverside! Have to say, that we preferred it! Smaller hospital and less people at the clinic there as well as more modern facilities! Dr. Dollin verified that the pressure in his eyes is manageable with drops, but that ultimately we'd likely eventually have to do at least the lasering of his eyes to correct the pressure issues and stop unwanted blood vessels from growing and admitted that waiting to see if the blood from his vitreous detachment would dissipate on its own did not work. So the only way to clear out the blood pool and try to recover any of Ollie's peripheral vision in his right eye was to do the vitrectomy surgery. At my encouragement he and Dr. O'Connor at CHEO confirmed later that day that Ollie would have the surgery and to my surprise scheduled him for December 15th (tomorrow). 

He's actually having both surgeries (vitrectomy and lasering) on the right eye. It's just day surgery with the prep and recovery after taking longer than the 1 hour 45 minute surgery itself. He'll be sedated and they have promised they'll manage any pain he might have, but said generally there is more discomfort like a scratchy feeling than pain. Recovery is about 2 weeks, so it's good that we'd just planned a quiet Christmas with just us this year. Ollie is upbeat about the surgery and hopeful that it will allow him to recover a bit more vision. He knows better than anyone that there are no guarantees when it comes to medical procedures and the pursuit of wellness, but despite everything remains his hopeful, positive self and believes it will be worth it. We all feel confident, but would totally appreciate your prayers anyways that all goes well and is easy for Ollie. I'll try to at least write a short update when I can.

In the meantime, we hope that you are having a wonderful holiday season despite COVID-19 and the cases rising again. We all know too well now that while there is nothing like being together in person, there are many safe ways to stay connected to those we love whether near or far. Please get your COVID-19 booster when you are eligible to keep yourself as safe as possible and to help us to keep Ollie and other vulnerable people like him safer.  

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.  

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.