Hope is stronger than fear

[Ollie stands proudly in the living room in front of the sofa beside his new Buddy Dog Hope who is wearing her yellow Buddy Dog vest.]

Sorry that I haven't written this before now, but it was a busy few weeks and my body and my brain felt like I had been in fight or flight again due to all of the adrenaline from the excitement. It seems my brain doesn't understand the difference between good adrenaline and bad anymore.

On March 5th, 2021 Ollie's life changed yet again. Thankfully the positivity continued and this was a change we had hoped for and waited patiently for 9 months to happen. 

Some of you may recall that last July when we were in Toronto waiting for his stem cell transplant, Ollie was lucky enough to have a visit from a Canadian National Institute for the Blind (CNIB) Ambassador Dog (Ziggy and his handler Audrey). We had applied for the CNIB Buddy Dog Program and since then Ollie has talked about little else (dogs and Beyblades consumed him). 

In January, when he was 6 months post transplant and doing so well, Ollie was cleared medically to eventually get a Buddy Dog when one became available. Shortly after that we received an e-mail from Miriam Mas, Program Lead for Buddy Dogs and Ambassador Dogs at the CNIB. She updated us, telling us that Ollie was fifth on the list for a Buddy Dog, so she hadn't forgotten about us, but was checking in to see how Ollie was and to let us know it would likely be a while yet until Ollie would get his Buddy Dog. 

Ollie was disappointed, but resolute in his readiness to wait and we figured it might be another year or so before he got one. Oh well! We figured this would give him even more time to be stronger and healthier when his dog finally came. 

A few short weeks later I got a call from Miriam. She explained that because of COVID-19 and the Buddy Dog Program not being considered essential (which frankly I believe it should be as it serves children who are blind and low vision, improving their mental and physical health and providing important resources to help them navigate their world of darkness), they were unable to travel beyond the Ottawa area to deliver the Buddy Dogs and train their new handlers. 

It just so happened that she had two Buddy Dogs ready to go to their new homes and given they had no idea when they might be able to travel again (we are currently experiencing the third wave of the pandemic with no end in sight) and the training facility is in the Ottawa area (in Carleton Place), she wondered if Ollie might be ready to have one so that the program could continue helping kids and give one of the dogs a loving home. Ollie had heard me on the phone with Miriam and insisted I put her on speaker phone. He was beyond excited and begging me with his own puppy dog eyes to say yes. 

What other answer could there be for my beautiful boy who survived a rare cancer with a double relapse in his brain and spine, went blind, had a stem cell transplant and made it back to wellness with his incredible grit?! Of course we were taking the dog! 

To give you context, Buddy Dogs begin as trainees for the Guide Dog Program, and are bred (in Australia), raised in Canada and trained (all over the country, but in particular at the CNIB Training Centre in Carleton Place) for two years by the CNIB with unbelievable commitment from incredible volunteer puppy raisers. Usually some little thing makes them less suited for the Guide Dog Program, but perfectly suited to teach kids like Ollie how to care for a dog to prepare them for one day having their own Guide Dog. 

Miriam had two sibling dogs to place,  Hope and Ray. As we later heard more about them, we learned that their mama's name was (wait for it...) Abby.

[Abby with her litter during feeding, including Hope, Ray and Owen who were all trained for the CNIB Guide Dog Program. The litter was born February 28, 2019 in Australia.]

Miriam told us that both were gentle, loving dogs in good health and ideal buddy dogs. Ray was raised in a rural setting and was a bit distracted in high traffic areas so we thought he may not be the best fit as we live in a very busy urban area. In Hope's case she had a bit of body sensitivity and didn't like the harness, but since the harness isn't used in the Buddy Dog Program, this was not an issue. Miriam brought both for a walk in our neighborhood before calling to tell us that she felt Hope would be the best fit for Ollie. Ollie was sad not to be able to give Ray a loving home, but was assured that he would be placed soon, too.

[Hope (left) and Ray enjoying exercise during time together in training.]

We also felt that it was perfect that her name is Hope and that is what we clung to during Ollie's incredible cancer and stem cell transplant journey. In fact, that's exactly what our oncologist Dr. Abbott told us on diagnosis day that we must never lose if we wanted Ollie to get well. 

To backtrack for a moment, the day before Miriam confirmed that it would be Hope, this blog post that her puppy raiser Catherine wrote about her popped up in my Instagram feed. I had felt an immediate certainty that Hope was meant to be Ollie's when Miriam said her name and after reading Catherine's post in tears, I knew that this was true.

With my blessing, Miriam shared Ollie's story with Catherine and I reached out to her to tell her how grateful we were for her incredible gift of time, patience and love. She shared amazing "baby" photos of Hope and like a proud parent told us all about how wonderful she was.

[Hope's first official photo as a puppy taken by Career Dogs Australia in front of a backdrop with their name.]

[Hope sitting on a wood beam near the ocean as a puppy in Halifax where she was raised.]

[Hope running in her CNIB Future Guide Dog vest as a puppy.]

[Hope with her face covered 

 in sand in Halifax.]

[Hope sits on a boardwalk in a wetlands area with a beautiful blue sky with clouds and rays of sunlight in the background.]

This is my favourite photo of all that Cathy sent. For me it confirms that Hope was heaven sent.

[Hope in a commercial building in front of boxes wearing her CNIB Future Guide Dog vest.]

Hope was lovingly sent by Catherine to the CNIB training centre in September 2020, just as we were coming back to Ottawa from Toronto after transplant. Another sign for me that she was supposed to be his from the start.

[Hope with a treat on her paw waiting for the command to take it.]

Buddy Dog training is 3 solid days and is more about teaching us than the dog (who is already well-trained after two years). Ollie counted down the days. At one point Hope had a minor cough and out of an abundance of caution for her and Ollie, the CNIB vet monitored her to confirm that it was nothing and she was okay. For those days Ollie was like a worried parent of a newborn...asking us daily for news and praying that she'd be okay and still be able to come on March 5th. Thankfully she was and she did.

[Hope with a grey towel on her head after a bath.]

On the morning of March 5th, freshly bathed the night before, she arrived with Miriam. We had agreed to have Miriam come despite the fact that she tried and couldn't get a COVID test because she was not "essential" and not exhibiting any symptoms. She was well (as were we) and we all wore masks and washed hands a lot for the three days she was here. We figured it was no different than being in hospital where you're constantly exposed to others and after 6 COVID tests in the past year, Ollie was never once exposed to COVID-19. We take few chances and we considered this one low risk and important for his mental health.

[Miriam and Hope arrive at Ollie's house to meet the family. Both.are in the front entrance looking into the living room where the family was waiting.]

Miriam had asked us to let her in the door quietly and then to sit in the living room calmly and let Hope come to us. She says normally the dog will sniff around the house first, then check out the people. Hope came in and went to Ollie right away when she first arrived (watch the video). She knew he was hers. She licked him and then greeted the rest of us excitedly, but gently. 

[Hope sits on the floor beside Ollie and Mario on the sofa.]

She is so well trained and settled down immediately to wait for whatever was to come next.

[Ollie and Mario sit on the sofa with Hope at their feet while Ollie holds her leash and pets her head.]

Ollie was completely in love with her from the start. She's so gentle, yet silly during play and very loving. Much like our gentle, silly, loving boy.

[Mario, Ollie and Miriam sit and watch as Hope lies submissive on the floor and Chewbacca the cat comes to sniff Hope's head.]

Hope was excellent with our cat Chewbacca from the beginning. It helped that she was raised with Cathy's cat (Olaf) and spent time with Miriam's cat in the two weeks before coming to us. 

[Chewbacca is lying on the Ottoman while being petted by Miriam and hanging his paw down to touch Hope below him on the floor.]

Now after two weeks together, Chewbacca and Hope are fast friends and even starting to learn to play together! 

[Buddy Dog Hope lies relaxed on the floor partially on a towel while Chewbacca the cat stretches out on his back at her head and stretches out to touch her head.]

The three days of training were intense for Ollie, who so desperately wanted to do it all perfectly. 

[Ollie holds on to Hope's leash indoors while holding the clicker in his other hand to tell her she has done a good job on the command. Miriam looks on.]

All CNIB Dogs are clicker and whistle trained with a lot of positive reinforcement and some treats of course! They're also kept at an ideal weight (between 60 and 64 pounds for Hope) and their food is measured and weighed carefully twice a day. 

[A masked Ollie stands beside Hope in a snowy backyard while using the "Go Busy" command while Miriam looks on.]

Ollie had to learn to do everything for her. 

[Ollie stands back watching Hope eat after feeding her in her new raised feeding centre with two bowls and storage for dog food underneath]

From feeding...

[Ollie and Hope out for a walk. There  is snow on the ground, but the sidewalk is clear. Ollie has Hope's short leash in his left hand and uses his blind cane in his right. Dawn walks behind Ollie and Hope holding the second longer leash that is used by the adult with Buddy Dogs.]

...to taking her out to "Go Busy", to walking and grooming her.

[Ollie sits on the floor beside Hope's bed while brushing her gently.]

Although Ollie is her handler and primarily responsible, the rest of the family was involved, too. We all learned her commands and how to care for her (in case Ollie needs backup)...

[Abby and Ollie sit on the floor on either side of Buddy Dog Hope who is lying on her side and having her belly rubbed by both.]

...and everyone got to play games with her...

 [Mario puts a treat in front of Hope who is lying on her bed while Ollie and Miriam look on. All are wearing masks.]

...and love her up.

[Ollie sitting on the floor beside Buddy Dog Hope who is lying down beside him with his hand on her head]

She is so smart and quickly caught on to new games that Miriam taught her (like "Go see..." where we'd send her to find one of us, thereby learning our names and "Go Find Dino" where she found a vanilla scented dinosaur dog toy when we hid it).

[Ollie stretched out on his red sofa in his new play space with one arm around Buddy Dog Hope who is lying beside him and resting her head on his belly.]

We don't allow her on the furniture EXCEPT when she is invited onto Ollie's bed on a blanket to sleep with him and he has allowed her to get up on a blanket on his sofa in the new play room with him. 

[Ollie asleep in his bed with arms stretched out and one resting on a curled up sleeping Buddy Dog Hope.]

Incidentally, before Hope came Ollie was still sleeping with one of us most nights because of bad dreams and waking up afraid of the constant darkness. Since she arrived, he's slept with her every night and not been afraid. Progress. She is a terrible bed hog, though! 😄 

On the Sunday after a busy day of Ollie helping to lead a Kids Kicking Cancer karate program fundraiser...

[Ollie wearing his Kids Kicking Cancer karate gi standing proudly beside Buddy Dog Hope who was wearing her CNIB Buddy Dog vest.]

...and all day Buddy Dog training, Hope and Ollie "graduated" (at least informally...official graduation happening online in April!) and we said goodbye to Miriam, thanking her profusely and wishing we could hug her. 

[A framed certificate with a photo of Ollie sitting with Hope that reads: Certificate for Buddy Dog Team Ollie and Hope]

Ollie has adapted well to having a Buddy Dog over the last two weeks, and for the most part has been thrilled to have her. There have been moments where he felt bad if she didn't listen to his commands, but we've been working on it and reminding him that Miriam said that it will take time and patience. That Ollie is the smallest and therefore she is least likely to see him as the pack leader at first. We've all deferred to Ollie and tried to let him do most of the commands if he's in the room. We've also had to teach him how to lower his voice when he commands and not to use his natural excited kid sing-song voice except when he's praising her or playing with her. So much for an 8-year old to learn and he desperately wants to do it all perfectly. 

[Mario, Abby, Ollie and Dawn sit on the sofa together while Chewbacca the cat sits in Dawn's lap and Hope the Buddy Dog sits in front of Abby and Ollie on the floor with her Buddy Dog vest on.]

This is exactly the point of the Buddy Dog Program - to teach them these things so that when he is older he will be completely ready to have a Guide Dog.

[Ollie sits on the floor and bows his head into Hope touching his forehead on her neck as she has her head down. His hands loosely hold her chin.]

Hope has wagged her way into our hearts quickly and at bed time you can usually hear each of us saying "goodnight and love you" to both Ollie and Hope. Because the truth is that the promise of her brought Ollie hope even before we knew she was our Hope.

[Ollie and Hope fast asleep on Ollie's bed while Ollie spoons Hope with his arm around her.]

I've said before many times that I don't believe in coincidences, but that everything is connected. It was Leona from Vision Loss Rehabilitation Ontario who first taught Ollie online Braille and introduced him to her Guide Dog and told us about the Buddy Dog Program. Cathy lovingly raised Hope, and so many volunteers, CNIB staff and donors helped along the way. Miriam gave us hope with the promise of a Buddy Dog during Ollie's stem cell transplant and a reason to get well. Then she literally gave us Hope when he finally did. 

(With thanks to Miriam Mas and Cathy Kieran for the photos and video that each provided). 

One Year Reflection by Ollie

Today is my one year anniversary of my diagnosis. I'm feeling kind of stressed today. 

I got frustrated, mad and sad trying to do my schoolwork today that felt too hard. And then I cried a little and it was okay. The crying sometimes makes things feel better.

I loved getting new Beyblades this year. They helped me get through all of the needles and scary stuff. The hardest part of the past year was really needles and dressing changes.

I don't feel scared anymore when I have to go to CHEO. This is because I learned to take deep breaths and calm myself down when I get needles. 

I'm okay with my blindness now. It made me feel scared and mad at first that I couldn't see. I just decided to accept that I'm going to be blind. I'm still the same even though I'm blind. So far there's not really anything I can't do.

I want to say thank you to everybody who got me through this. Thanks for all of your help and kindness. And thank you for all of the gifts.

Cancer's ass has been kicked (this is the one bad word my dad let me use this year)!

(Note from Dawn that this is a transcript of exactly what Ollie told me he wanted to say.)

Motivation and Rewards

What motivates you to do the hardest things? Is it the satisfaction of accomplishing a goal? Praise and admiration from others when you succeed? Attaining some material thing that you desire?

Motivation is different for each and every one of us depending on what we need to do, overcome or accomplish. Sadly there's no recipe for motivating someone to get through cancer or adapting to blindness, especially a kid. That's something we've grappled with from the start of Ollie's Anaplastic Large Cell Lymphoma.  HOW do we get this determined kid to do all of the hard things and keep going to tackle the next hard thing? And there have been way more hard things than I ever imagined possible.  

Through trial and error we have learned a few things along the way about how to motivate our boy to go through the hell he has had to in order to survive. Mario, Abby and I didn't need more motivation than the fear of losing our Ollie and the knowledge that if we didn't do all of the hard things it took to help him beat cancer he wouldn't survive. He was our constant motivation and the biggest reward at the end.

Rewards have always motivated Ollie. He likes to compete and win. He likes to collect things and become an expert in the things he collects. His favourite foods can stimulate him to get things done. And so, while I hate the idea of spending money on things we don't really need, we honestly needed to buy more Beyblades than I ever imagined possible. He had a collection of about 40 pre-cancer and now has a collection of 240 to give you a sense of how many hard things we have had to motivate him to do this year. We've also eaten more Gabriel Pizza and Merry Dairy ice cream than our bodies likely appreciated (although it was all yummy!). 

Ollie is working with the Vision Loss Rehab team to master his cane. Jennifer is an amazing and patient teacher. Ollie can't wait to walk and see how far he can get. We even walked at the hospital this week! Earlier this week with the enticement of a pint of Merry Dairy ice cream at the end, he walked 6 blocks there and 6 blocks back (the last two holding my arm as fatigue had set in at 10 blocks since its the farthest he's walked since January when he had lymphoma in his brain and went blind). Twelve blocks! 

We also discovered that although Ollie hasn't mentioned it since before transplant, he can see shadows and sometimes lights glowing again. When he was working with Jennifer as she kept trying to put obstacles in his path for his cane to find, he told us he could see which side she was putting it on because he could see her shadow moving! The ophthalmologist at CHEO and Sick Kids told us that while his optic nerves are severely damaged and irreparable, as the inflammation went down and he stopped taking high dose steroids, he may be able to see shadows and forms on good days. Unfortunately the optic nerve is one of the only nerves on your body that cannot yet be repaired, but this does help him to protect himself a bit better. 

We are grateful to Marlene and her team at the Merry Dairy in our neighborhood for the enticing treats that are motivating him to get moving. In fact we've been there three times this week...

It was cold today, but we were eating ice cream and grateful for it because it makes our warrior want to get moving and stronger. We'll start our diets when the snow flies I guess! 😄

We got a new balance ball chair last week and he's loving it. Thanks to Stacey who uses one in our office, which gave me the idea for Ollie to use it for online schooling! His balance and strength in the past week has improved exponentially and his physiotherapist is astounded at his improvement. He even insisted on pumping up the ball when we were assembling it!

Last weekend dear friends Andrew and MJ brought by a bunch of gently loved clothes that their kids were done with. For Ollie who hasn't been in a store of any kind in a year, it was like we brought the store to him! 

He loves skateboarding, so he was thrilled to find so many cool clothes from Zoo York and gently used Vans shoes since he'd outgrown his two skateboarding pairs. 

He was pretty thrilled about the Vans high tops and honestly these shoes have motivated him to walk a bit farther each day! 

He also had some fun trying on some silly onesies! Mario was like a kid dressing up a doll! LOL

All of this excitement tuckers a new stem cell recipient out...Chewbacca is always happy to keep our little napper company! 😄

When he wakes he's hungry and thirsty...he's now determined to get much of his own stuff when hungry. I live in paranoia of pickle jars tumbling out and smashing his toes, but he's got to learn again sometime.

Lately he always wants to prove that he can still do normal stuff. When his sister was (as usual) trying to get out of chores, Ollie begged to be able to do them. So I let him Swiffer mop the floors on one level, all the while feeling I was extorting the poor little blind, former cancer kid. Meanwhile he was fleecing ME as he convinced me to pay him extra for every one of Abby's chores he does. 😂

But he was so proud when it was done and with a bit of instruction did a pretty good job. Also we know that our job as parents now that he's blind is the same as it was before: to prepare him to live a good, kind, independent life, able to take care of himself and a family of his own one day.

Things are going really well with his vision itinerant teacher now that she's making many tasks a game or competition for him. He was speed skip counting against his earlier times today and then using blocks to 3D graph and compare his progress. Then she read him a chapter from the latest book of his favourite series (The Bad Guys) and asked him to use Lego to build what he thought the mad science lab in it would look like. We all helped a bit (which his teacher said was okay) and he so enjoyed working with us and using his hands to create a 3D picture since he can no longer draw easily since he can't see what he's putting on the page.

As for me, I've had two sessions with my new psychotherapist and it feels good when she tells me how normal for cancer families and especially caregivers all of my seemingly bizarre emotions are right now. 

I am spending a lot of time on mundane admin stuff like getting insurance companies to send me pre-authorization forms for new meds, filing a backlog of insurance claims, getting income tax docs ready to finally file from 2019 (CRA was very understanding given how the past months have gone for us), and generally being Ollie's admin assistant and scribe. 

I did stop and finally take my selfie with the literal and proverbial sign that kept me going for months after his last relapse as we trekked back and forth from the CHEO during radiation and the many checkups and tests as we waited for remission as the green light (or really the teal light as evidenced in the sign above) to go back to Toronto for stem cell transplant. 

I am eternally grateful to all donors and potential donors of all blood products and stem cells. I am donating blood this weekend for Thanksgiving 1. In memory of my grandfather who passed 30 years ago this weekend from cancer;

2. In honour of Ollie; 

3. As thanks for all of the generous souls who have donated blood and plasma and saved him so many times this year;

4. To pay it forward and sad someone else's kid the way that others helped to save mine. 

If like us, you're not seeing family this weekend to keep everyone safe with COVID cases on the rise, please consider making an appointment to give blood, too. Think of Ollie and so many brave souls like him who need your donation to stay with families who love them. Give thanks while doing so for your many blessings, especially your health and loved ones. I have never been so grateful for mine.

I leave you with Ollie's list of things he's thankful for this year (Mommy was his scribe so excuse the poor printing). I find it fascinating that beating cancer was last on his list as it's one of the first on mine this year. Happy Thanksgiving to all and stay safe! Love from all of us!