Cancer and Contentment

Our family has long prioritized being together and having fun experiences over a big, perfect home and expensive lessons, sports participation, etc. While there are many days that I long for a perfectly organized and pristine home, I wouldn't trade our often chaotic home and time together for it. It's especially true right now, when we're home a lot and could be finishing so many home projects at the expense of missing precious time together. These last 7 months have again and again reminded us that nothing is more important than just being content together.

So we've been splashing and playing together in our giant kiddie pool, having water gun fights, Beyblade tournaments, board game nights and anything that amuses us and brings joy.

It takes me back to my own childhood when we always had a pool. First when my parents were still together, an above ground pool until I was Ollie's age and later as a teenager when my mom and stepdad put an in ground pool in. 

Abby has been having a lot of virtual playdates online and dug out her sewing machine to make some Barbie clothes with her friend Emma (with thanks to Magda-Lena for giving virtual advice).

Ollie has been doing so well with the walker and his virtual physiotherapy sessions. He worked especially hard this week for a reward. I offered him a toy and the little devil negotiated cash instead! 😄 Whatever keeps him working hard!

Abby has been so wonderful with Ollie and so patient in helping him to have fun, even if we have to modify how we normally do things to make that happen for him. I am so proud of the young woman she is becoming. 

She made a decision about where she wants to go to middle school. We have a dear friend who teaches there and she offered to connect us with the administrators to ensure that Abby is well-supported next year given our family's situation. I then got the loveliest messages from the school's resource teacher and the principal, so we are very grateful to know that Abby will continue to have caring educators around her when we cannot be with her.

In the meantime, Abby remains stressed at the idea of being physically close to those outside of our family as she fears that one of us will become sick and infect Ollie. Everyone must make the best decision that they can for themselves as Ontario continues to open up further, but we know too well the extra danger our family is in, so we'll have to continue to be extra careful as we wait and see what happens regarding COVID-19 cases. So Abby is working with the social worker to deal with her fears and we are limiting our contact as much as possible both for safety and to ease her fears.

On Tuesday we were at CHEO for the weekly bloodwork and dressing change. At the last minute, our oncologist was able to get us an appointment with Dr. O'Connor in Opthomology to check out Ollie's eyes and optic nerve. Thankfully Ollie has had no further eye pain, but has had dry eyes and discharge (which are also side effects of brain radiation), so we wanted to get that checked out.

The doctor had a beautiful bedside manner with Ollie, telling him each thing he was going to do before doing it, so Ollie was comfortable and calm. He looked at his eyes, did a dry eye test to verify if that's all it was (which appears to be the case) and told us things look as he would expect them to at this point. He gave us steroid drops if he has any further eye pain. He said he can still see that parts of the optic nerve are pale indicating damage and it makes sense that he would see light intermittently. 

Ultimately they're pretty certain now that Ollie will remain blind, or will be significantly visually impaired if he recovers any ability to see colour, light or shapes/forms. Honestly we're all okay with this. We've made our peace with it and are focused on kicking the cancer out. When you are fighting to save your child's life, his sight is so secondary in the big scheme of things. 

He's accepted it and only feels bad about it when others say it might still come back around him. He told me he feels like when they say that they will think he is less able because he can't see, but he CAN see now with his hands and his ears and even with his sense of smell. We've told him he can do anything he sets his mind to and he has. He's a smart kid and he knows what the doctors have said. HE has lived in darkness for 5 months and adapted. Now everyone else around him needs to.

On Wednesday Ollie and I did a radio interview with Sam Laprade on her Special Coverage of COVID-19 show on 1310 News. She's been following our blog and for National Blood Donor Week, she wanted to profile Ollie's need for blood products. Ollie completely stole the show and I was so proud of him and Sam was thrilled. You can listen to our interview here (we are on just after the 37 minute mark).

In the interest of moving forward, we had our first virtual lesson in Braille on Thursday with Leona from the Canadian National Institute for the Blind (CNIB). 

She had Ollie use half of an egg carton and 6 ping pong balls as well as a die to learn the dot system for Braille. She made a game out of it and naturally, Ollie won. 🏆 Next week we'll learn how to start putting the dots together to make letters. 

We've applied for a Buddy Dog through the CNIB which prepares kids to eventually have a guide dog. The Buddy Dogs are trained at the CNIB's facility in Carleton Place and help kids to get comfortable with dogs and starting to use them as their eyes. There's a waiting list, so it'll likely be a while, which is good as we want to get that stem cell transplant first. Most importantly Ollie is thrilled about the idea and it is really motivating him to embrace his blindness and learn to do things independently so that he can get the service dog.

We also got a call that afternoon from the Vision Itinerant team at the Ottawa Carleton District School Board. The Ottawa Catholic School Board (OCSB) contracts the OCDSB's team to provide services to blind and visually impaired kids like Ollie. The CNIB helped us to make contact so we can start the ball rolling on getting resources and an itinerant teacher for Ollie beginning this fall. He'd still have his regular teacher in his regular class at his current school, but he'd also have an itinerant teacher to help him with Braille and assistance in the class for 50% of the day and an educational assistant for the rest of the day. The Board will provide him with technology and all resources that he'll need for school and home. The best part is that Ollie's rights under the Charter of Rights and Freedoms are guaranteed as he cannot get an education without this accommodation, so they cannot be cut or taken away. 

I have never been so grateful to be Canadian. No medical bills and my special needs child will still get resources and an excellent education without us needing to send him to a special school.

Also on Thursday our friends the Navas stopped by to drop something off and it turned into an impromptu socially distanced water gun fight. Ollie was so thrilled and was really good at using his ears as his eyes. Each time the girls squealed he easily pinpointed their location and hit them again. He was so mischievous and gleeful that it made everyone happy. 

Thursday was also my birthday, so as usual I spent it with my beautiful family who all made it special. Ollie made me some jewellery with a bit of help from his sister. Abby bought me things with her own allowance money this year and was way too generous. My favorite of her gifts was a beautiful little book that she filled in all about me. It made me tear up. 

Mario also bought me lovely gifts, aided heavily by Abby who insisted on running the show this year. 

Between them and dear friends who dropped little thoughtful gifts by and the many calls and messages that I got yesterday, it was a beautiful day and I was so grateful for the love and good wishes. Pretty sure you all know what I wished for...

Today was another good day with a chat online with his friend Henry and a Google Meet with his class where he was thrilled to answer their questions about his treatments and to share his latest news. He then played Beyblades with Daddy on the deck for a while. 

We got ice cream cones later and had corn on the cob with dinner on the deck (at Ollie's request despite how cool it was), could the day have been any better?!