In the blink of an eye...

I can hardly believe it's already been a week since I last posted! So much and yet so little has happened since then.

We've spent a lot of time on the deck as Ollie loves it. The photo above was a bit crazy though as it was one of those really cold days this week and we had Ollie all wrapped up in blankets while wearing warm clothes and we started the fire to stay warm!

Ollie had a visit to CHEO's Medical Day Unit (MDU) on Tuesday and they added a Friday visit since Tuesday his hemoglobin and platelets were low and they wanted to check if he needed a transfusion before the weekend (he didn't!). His dressing change on Tuesday was likely his calmest ever. Since we've stopped his morning dose of Olanzapine (anxiety med), it was all on his own steam and self-regulated. Impressive.

He'd been having some eye discharge and starting to see light again at night in a dark room when lights are turned on. A sign that his optic nerve is no longer suppressed by the lymphoma (we think). Also a possible side effect of the radiation. Unfortunately when we got home Tuesday afternoon, Ollie had terrible eye pain that required Tylenol and an ice pack under his eye mask. He slept a bit and still had it when he woke, but it did go away that evening. The next morning it was the right eye, although less painful and short-lived. 

This was scary for us because when he last relapsed in Toronto it was headaches and eye pain. The doctor checked him out Friday and thought everything seemed okay, but reminded us to let them know if he has any headaches. They also asked for an opthomology consult soon for his eyes and nerve to be rescanned.

Our friends Kim, Trevor, Ewan and Jackson kindly dropped by some specially ordered rare Beyblades for Ollie while he was feeling unwell and that really perked him up!

By late in the week he was in great form and happy, although getting a bit bored given we now have more time at home. So Daddy helped to set up the Ipad that Candlelighters provided him with and I downloaded some accessibility tools and apps for the blind. There are games that you can play even without sight! The first he tried was called, "Blindfold Racer". Essentially using the Ipad like a steering wheel and wearing his wireless headphones, he is taken through a race course where he's driving between two fences and gets audio cues to tell him where he is. If he gets too close to the left fence, it beeps in his left ear and he has to steer right and vice versa. There are also obstacles like chickens and cows that cluck or moo in the ear closest to them. The first time he competed a level he excitedly shouted, "I DID IT!!!" He was so proud to be able to do something he always loved before he went blind. I teared up and said a silent player of gratitude for that video game developer. There's something I never thought I'd do!

He also joined his and the other two grade two classes in an online Google Meet on Thursday and was thrilled to be welcomed and included. 

Abby's been keeping busy with personal projects like tie-dying everything white that we own. 😆 She's still doing some schoolwork each day, but has been kinder to herself since her teachers have told her there is zero pressure from them. Her virtual leaving ceremony is coming up June 19 and we are all sad that her last year has gone this way.

On Friday Ollie's lovely physiotherapist Allison came to the house with Shellie from the equipment company Motion to fit him up for a walker. We don't think he'll need this for long, but feel this will give him the confidence to be more mobile and independent. He desperately wants to be more of both. Another day when friend Sean dropped thoughtful gifts by and I was on the porch talking to him as he stood on the sidewalk, Ollie appeared at the front door unassisted. Mario was working at the dining room table and hadn't heard him get up and come to the door. While we're happy he wants to get up and go, it's frightening too as he's still wobbley with his balance not quite right yet. Again it's a lot like when your baby takes their first steps and you're so excited and scared all at the same time. So at least with the walker he will be supported.

Chewbacca has become Ollie's frequent lounging buddy. 

At first this made me nervous, too as animals have an innate sense of when people are sick and need help. A month ago I think that was true. Now I think they've further bonded and Chewy just loves to snuggle. Ollie is pretty thrilled with the arrangement.

As for me, I'm trying to get things done, like go through the kids clothes and give away anything that doesn't fit. Organizing my own closet to do same...doing paperwork for insurance claims for medications and equipment...sending notes of gratitude to so many kind people who do beautiful things for us regularly. 

And today I donated blood. This is something I have been wanting to do for a while but have not felt up to physically or mentally. It is also something tangible I can do while we wait for his MRI to happen the week of June 22. It took just over an hour, was beautifully organized and socially distanced and it was steady. When your child relies on the availability of blood products for random transfusions you have a deep appreciation of the importance of these donations. I've been a donor in the past, but had issues with iron and often couldn't donate. Thankfully all of the supplements and immuno-boosters I've taken for 7 months have solved that problem (with thanks to my friend and Naturopathic Doctor, Colleen McQuarrie at Ottawa Integrative Health Centre for keeping me well with her good advice).

Finally, the kids were asking for the kiddie pool I gave away several summers ago and begged for a new one, so we upgraded their idea a bit. It's a bit crazy in our small backyard, but they need entertainment and we need something safe for Ollie to play in (lakes, the river, etc. are out for him given bacteria), so a 12' by 30" pool with filter will be our fun this summer. And it will be worth any joy it brings them. Hopefully they won't get hypothermia, too!

Overall a good week, with Ollie mainly feeling good and being his silly chatty self. He's all set to enjoy summer with his pool and waterguns (loved it so much he napped with it!). He also has a birthday coming up at the end of the month, so we're gearing up for a few good and fun weeks!