Hypothyroidism in the Springtime

[Photo description: Abby and Dawn sit on large rocks while Ollie and his CNIB Buddy Dog Hope stand beside them in the late afternoon in a field at the Central Experimental Farm in Ottawa]

It's been a busy month and we're grateful that spring (formerly March) break is finally here to give us a bit of a breather. I say a bit because there always seems to be something else going on and last week and this week it's been doing our interview and footage to tell Ollie's story for CHEO's upcoming annual telethon. It's a simple way we can help to give back because the best way we know to repay people for saving our son's life is to help them with resources to make their lives easier and to save others, too. 

We were also thrilled to participate in the recent annual third-party fundraiser, Snow Angels for CHEO and exceed not only our campaign goal, but the total fundraiser made beyond its goal, raising over $8,000 for CHEO's Oncology/Hematology unit. We are grateful to all who help us to give back to CHEO.

[Photo description: Ollie stands near the kitchen sink where he has been having an online lesson on 3-D shapes and their volume, while his vision itinerant teacher Mrs. Shepherd watches over from the tablet on the windowsill]

Ollie has been relatively well and with the transition to spring, has had a couple of tired weeks. He has been having some significant emotional outbursts lately due to frustration and anger, although he couldn't seem to put his finger on why. He's also been having bad dreams again and not had much appetite.

I honestly think his body and his brain subconsciously remember the trauma we all underwent last year at this time. He had a major melt down in April 8th. When I got thinking about why that might be after him saying he didn't know, I realized that last year on that day we were in Toronto preparing for stem cell transplant and were told he was relapsing again and the transplant was on hold. I don't believe in coincidences, so I honestly feel that he felt the trauma even if he couldn't name it. Usually I am same and have to check the calendar and sometimes this blog to see what was happening last year at this time that might explain my anxiety or general feeling of sadness. 

[Photo description: Ollie rests his head against CNIB Buddy Dog Hope's head as the two sit on his red sofa in his new clubhouse  waiting for the CNIB Spring Into Braille virtual event to begin. Ollie's team won the competition.]

On Monday Ollie saw the social worker at CHEO in addition to his regular bloodwork and check-up in hopes that talking to someone outside the family will help him to validate his feelings. It's awfully hard to support your children's mental health when yours isn't so stable. We are so grateful for the mental health services at CHEO and the help that they give our children.

[Photo description: Ollie sits on the floor of his clubhouse, peeking out from around two blow up NERF battle barriers while wearing safety glasses and pinching his NERF gun toward the camera. CNIB Buddy Dog Hope sleeps on her bed to the left of the frame while the NERF battle went on with mommy and daddy.]

I was sitting in the hall at CHEO's Medical Day Unit (Hematology/Oncology clinic) and wrote part of this while Ollie talked to Sherley and it felt surreal. So many hours spent there writing about our life over the past year and a half. People kept walking by and getting excited to see us such as other cancer- and stem cell transplant survivors and their parents as well as so many oncology staff who took amazing care of us all.

It's always so strange to me that a place you never want to go back to because of so much trauma is also so comforting and feels like coming home somehow. Maybe it's simply because we all have bonded through shared experience and our gratitude for the people who got us through it is so immense and gratitude feels good.

We got a call from Ollie's oncologist yesterday. As soon as I heard her voice only two days after seeing her and not expecting a follow up, my heart leapt into my throat for a moment. Thankfully she understood and immediately after I said hello she said, "Everything's okay."' Breathe. She called to let us know that the last two monthly blood tests showed that Ollie has hypothyroidism (a slow thyroid) and he needs to take hormones to fix that for at least a couple of months. It completely explains the fatigue, mood swings, lack of appetite and his significant weight gain lately. It is a relief to know that this is easily corrected. It's so hard to know if any of these types of things are psychological or physical. 

[Photo description: Ollie sits in a dental chair with his stuffie Llama Llama Blue Pajamas at CHEO's Dental Clinic while the dental hygienist prepares to clean his teeth. Ollie was getting a post-chemo/post-radiation/post-stem cell transplant x-rays and check up.]

We were there last week to visit CHEO's Dental Clinic, too. It's a seemingly little known fact that chemo can severely damage your teeth and in children even stop adult teeth from growing in at all. It's been a constant stressor as we fought him daily to brush his teeth, even on the days when he felt so sick. Thankfully after we got through the torture of x-rays (the plastic cut into his gums so mom had to put a lead vest on and hold the piece just so to enable the x-ray to finally get done...I am starting to feel that I am as radiated as he is, so thank goodness I'm past having more babies) and they cleaned and checked his teeth the doctor confirmed that everything looked great. Aside from them sealing two teeth to prevent future issues, he had no cavities or concerns. One long-term side effect we don't have to worry about!

[Photo description: Ollie sits on an exam bed wearing a ball cap and face mask with two thumbs up while Lisa Garland, nurse and owner of TiredSole Complete Foot Care stands behind him wearing a mask and giving a peace sign.]

A couple of weeks ago I took Ollie to see Lisa Garland, nurse and owner-operator of TiredSole so that she could laser the persistent plantar's warts on his feet. Lisa had reached out to me during Ollie's treatment to offer support. She is the incredible mama of two cancer survivors who were treated at CHEO. She treats a lot of post-cancer patients who often have issues like warts because of their compromised immune systems. She was awesome at calming Ollie's fears and his first treatment was quick and painless. We go back in next week for another treatment, but things are already looking better as he's no longer complaining of pain when he puts his shoes on and walks the dog. 

I've met so many amazing people like Lisa since this all started. I am constantly grateful for the many cancer families who have taken us under their wing and helped us to navigate every step of the cancer and post-cancer world. 

[Photo description: Ollie sits at the dining room table with his back to the camera while facing Mario who is standing behind a plastic deer head with cups in its antlers. The game is called, "Deer Pong". 😆]

Ollie is missing friends a lot right now. We know all kids are missing friends with lockdown, but remember that Ollie has not truly played with friends in over a year and a half now. We know we're almost in the end zone and just have to hold onto the ball for a bit longer to win the game, but man do those last yards feel like the longest sometimes! 

[Photo description: Ollie lies on his back on the sofa with his, eyes closed while leaning on CNIB Buddy Dog Hope.]

Thankfully he has Hope and she has quickly become his best friend. She is companion, playmate, physical trainer, unofficial therapist (he whispers feelings to her constantly) and a reason to get up everyday for him, even if he doesn't always feel like it.

 Today he participated in two online calls with the CNIB. One with coordinator of the Buddy Dog Program, Miriam, who helped us work with Hope a bit to overcome her body sensitivity issues and dislike of her Buddy Dog vest. And the other with Hope's Puppy Raiser and CNIB Marketing Communications Director, Catherine as well as Miriam and a bunch of other Buddy Dog duos. It's awesome that Ollie and Hope are one of only 14 of these dynamic duos in Canada. They were being trained today to do media interviews about the program if asked. Stay tuned for more info in a couple of weeks when the CNIB Guide Dog Program has its graduation and Ollie and Hope graduate officially! 

[Photo description: Mario, Abby and Dawn smile on a walk at the farm while squinting at the sun, while Ollie makes a funny face with his tongue out.]

We take Hope for long walks to the Experimental Farm almost every day and for a little while practice letting her off leash and getting her to follow 

 commands. She's really starting to see Ollie as her leader and listening well to him. 

[Photo description: Ollie walks Hope on her extendable leash while holding on to Mario's arm at the farm at dusk.]

Ollie has also been getting outside more thanks to Hope and spring. Easter weekend he got back on his skateboard for the first time in almost 2 years since testing and diagnosis. Balance is super difficult when you're blind, so as usual, Ollie showed us that nothing is going to stop him from doing what he loves. 

[Photo description: Ollie is on his skateboard, wearing a helmet and wrist guards while holding a victorious hand in the air to celebrate his first time back on the skateboard in almost 2 years since cancer arrived.]

He was pretty good before cancer and a regular at the indoor skate park near us called The Yard. He has literally loved skateboarding since he was barely old enough to carry one. It's one of the reasons to get well that he listed last year at this time when he had relapsed for the second time. It's so gratifying to see him getting back to things he loves. He was just 2 years old when he started and I admit it scared me somewhat, just as it scares me now that he's blind. But then and now he wore all of the safety gear and we let him do it in a safe and controlled way to help him to do it with harming himself as he learns (and re-learns). I remind myself that even though he can't see, he's still the same energetic, eager little boy who wants to try things and push his own limits. He's always been that way and still doing it.

[Photo description: Ollie at just 2 years old on a small skateboard inside the living room on foam mats while wearing protective helmet and pads.]

Most of the time Ollie is content to do tamer things like swing in the hammock with mama...

[Photo description: Dawn and Ollie take a selfie while lying in the hammock on the deck and enjoying unseasonably warm weather.]

Or start this year's vegetable garden from seed...

[Photo description: Ollie sits at a table in the deck and feels the packets of vegetable and flower seeds while preparing to plant them in seed pods.]

[Photo description: Ollie sits on the deck in the sunshine and pushes  vegetable seeds into growing pods.]

 

[Photo description: Ollie's green thumb is obvious in his seeds which began to grow in his mini greenhouse within a few days. Here seeds have started to sprout.]

[Photo description: In May 2020 Ollie was undergoing radiation after relapsing a second time in his brain  and was eager to plant a vegetable garden when he was home from Toronto.]

Last year he begged me to let him plant one despite his neutrophils being low and our concern about bacteria in the soil, but we braved it with gardening gloves. His garden grew really well then, too, but we never got to taste any of the veggies as we were already back in Toronto for stem cell transplant by the time they grew. I've assured him we'll be here to harvest and eat everything this year.

[Photo description: Ollie gets his second doses of two childhood vaccines and his Hepatitis B shot at CHEO while holding Llama Llama Blue Pajamas earlier this week.]

In other news over the past few days:

- My long term disability (LTD) claim was finally approved (a year after my work sick leave ended and 6 months after I actually applied) by the insurance company

- We just got scheduled for our COVID vaccines as caregivers to a stem cell transplant recipient (Phase 2 provincial vaccine priority). We can't wait for Saturday!

All in all, despite the seemingly never-ending lockdowns and missing people, a pretty good start to spring. Hope yours is shaping up well (in spite of pandemic), too.