Vision for the Holidays and 2022

[Photo description: Ollie is dressed in a hospital gown and snuggled by Dawn as both wear masks and sit in the waiting room at CHEO's Surgical Day Unit.]

Ollie had eye surgery on his right eye at CHEO on Wednesday, December 15th. He was a bit nervous the night before and the day of, but overall in good spirits and a total trooper as we got ready and set out for CHEO that morning. 

As usual he wasn't thrilled about the waiting, but at least he's no longer on steroids like he was during cancer treatment. Then he used to rage if he waited too long for anything, especially when he was NPO (Latin for not by mouth or no eating before surgery). 

[Photo description: Ollie waits in the waiting room of the Surgical Day Unit while playing with fidget toys to pass the time.]

He was getting a bit grumpy by noon when he was in the Surgical Day Unit ready to go and just waiting for them to take him in. After getting his vitals checked and having drops put in his eyes, the nurse gave him a new owl stuffie as a reward for his patience and cooperation. 

Finally, about 20 minutes later than planned, they came to get us. On our way into the prep/recovery area, Ollie had a little bout of nerves. It was weird this time because he's never been well/strong enough to walk in instead of being wheeled in on a gurney. He got angry at me when I made him go to the bathroom (I had to remind him that if he didn't he might have an accident when he was sedated), then burst into tears. Naturally this was just as the doctors had arrived and wanted to talk to me about the plan. 

[Photo description: Ollie wears a hospital gown, hospital pants and mask while sitting in the waiting room with his white cane and new owl stuffie.]

Thankfully they were preoccupied with finding the anesthesiologist who had been delayed in her earlier surgery, so they gave us a few moments to get ourselves together and ready. As he hugged me and calmed down, Ollie was very apologetic for his outburst. I reassured him that he didn't have to apologize for feeling overwhelmed, everything was going to be okay, and surgery was going to go well. After some big hugs, Ollie was ready to go. 

To my great surprise, despite COVID-19 risks they allowed me to walk him right into the operating room. This required me to be in full PPE, but made both of us feel more comfortable. It was an OR way in the back of CHEO and the largest I had ever been in with Ollie. The anesthesiologist knew Ollie from previous surgeries and procedures and was so kind as always. Ollie being the pro he is had asked to be sedated with the gas (what a bizarre world we've lived in that my 9 year old knows the menu of sedation options). The anesthesiologist was happy to give him what he asked for and even made the gas smell like strawberries, so he was out before he counted to 20. 

They invited me to kiss his head through my mask and promised they'd take great care of him. I thanked them profusely and walked out feeling confident that they would keep him safe. Honestly this was easiest of all of the many times I've had to leave him in the hands of the amazing team at CHEO because I knew it was going to work out.

[Photo description: Dawn and Ollie take a selfie in recovery after Ollie's surgery. Ollie is wearing an eye patch and lying in a hospital bed looking tired.]

Dr. Michael Dollin (retina specialist at the Eye Institute at The Ottawa Hospital) and Dr. Jeff Mah performed his victrectomy and lasering. Surgery took about two hours, and they came down to see me in the waiting room afterwards, smiling behind their masks (you can tell). They were happy to report that surgery went as well as they could have hoped and he was doing great in recovery. They confirmed that it hadn't been a retina detachment, but indeed a vitreous detachment (as suggested in the MRI report, but could have gone either way). They were able to repair the main blood vessel attached to his retina to restore proper blood flow, clear out that pool of blood that had been obstructing the bit of peripheral vision he had before, and had put a half gas bubble and a couple of stitches in his eye to hold everything in place. Both will dissolve as he heals.

[Photo description: Ollie feeds himself chicken noodle soup with rice at home.]

Unfortunately, they reported that he did have the beginnings of cataracts in his lens (very common in cancer patients after chemo), so they decided to remove it because it was not usable for him that way anyways and healthier to remove it.  The lens is used for focusing (just like the lens of a camera) and because his optic nerves are already severely damaged from the lymphoma, even with a healthy lens he wouldn't be able to see details right now. Our goal is to keep his eyes healthy so that as science evolves and it is possible to fix his optic nerves, he may have the possibility of more sight one day if he wants it. Dr. Dollin explained that it is already possible to have an intraocular lens (IOL) implanted and as science advances and his optic nerves can be fixed, they could add an IOL in future to enable him to see again. Overall I was so grateful that everything went well and glad I'd listened to my mother's intuition again and pushed for the surgery because it was successful.

[Photo description: Ollie sits on the sofa with a table and a Beyblade stadium in front of him as he prepares to rip his Keyboard and Mario's hands can be seen reading to rip.]

Ollie was groggy in recovery, but felt okay otherwise. He was thirsty and eager to leave and go to McDonald's since he hadn't eaten all day. Given he was still tired, he rode out in a wheelchair and Mario picked us up. By the time we got home and he gobbled down McDonald's, he was almost back to normal. He is absolutely incredible.

When he discovered he was well enough to Beyblade, all was right in his world again! 😜  He honestly he's had no pain, just some minor itchiness as the sedation came out. He has two eye drops to take four times daily for the next few weeks until the eye is healed.

[Photo description: Ollie sits on the sofa wearing a t-shirt shirt and pajama pants with Santa hats beside Hope.]

He slept well and got up early. About mid-morning we went to The Eye Institute for a post-operative check-up. Everything looked great, there was minimal bleeding from the surgery and Ollie felt good. He was able to see light already and the doctor expects it will get even better as it heals. He'll continue to be legally blind, but it looks likely that he'll recover some peripheral vision to see shapes and shadows. We were told to just have him wear the eye shield to sleep and by day only wear the patch if he felt he needed to. 

[Photo description: Dr. Mah examines Ollie's eye in a darkened room at The Eye Institute the day after surgery.]

The hardest part about his recovery was just keeping him calm and inactive. Thankfully he didn't need to have a full gas or oil bubble in his eye and have to stay face down for days, so that was a relief. We'd read about how this surgery could require complete bed rest and doing nothing for up to 4 weeks! Naturally Ollie  continued to be full of energy after surgery, so there was a lot of me reminding him not to bend, bounce, run, yell, or get angry. We needed to keep his pressure down to minimize any bleeding. The week went fairly well.

[Photo description: Ollie clowns around while leaving The Eye Institute, holding his cane like a sword and wearing a black eye patch like a pirate.]

Six days later we went back to The Eye Institute and Dr. Dollin said everything looked great, his pressure was normal and declared him already able to get back to "normal daily activities". I explained to Ollie that this still meant he needed to take it somewhat easy and there would be no skateboarding or sports yet. Dr. Dollin gave us instructions to taper his drops over the coming weeks and said he'd see us in 3-4 weeks when we could talk about a plan to do the second eye since the first went so well! 

Victory! I feel vindicated after being the pushy mama for the past 9 months since I noticed Ollie struggling in the darkness and insisted we needed to fix this if we could. I am grateful as always to Ollie's brilliant, yet humble doctors who treat me like a partner in his care and listen, even when they may at first think I am the overreacting mama. 

[Photo description: Ollie and Mario stand in front of the Christmas tree wearing matching work overalls, t-shirt shirts and tuques. They are smiling while Mario has his arm around Ollie.]

With COVID numbers exploding everywhere (it's estimated that numbers are at least three times higher than reported since so many people are isolating and there aren't enough COVID test), we're still trying to keep Ollie from getting it, even if Omicron seems to be a milder form. The thing is he only had one vaccine so far and we don't know what his short- or long-term effects might be if he got it as a stem cell transplant recipient. Sadly we know many families now who have gotten it here and in Toronto and are facing Christmas in isolation. We feel for these families and hope they'll weather it easily and quickly. A Christmas in isolation certainly is not the worst that can happen to a family, as we know too well. This is our third in isolation and we'd do as many as needed to keep our family safe and well. 

[Photo description: The package received from Santa through Canada Post elves. The envelope is shown at the top, Abby's printed letter on Christmas paper is on the left and Ollie's Braille letter is on the right.]

We'll end on a happy note because despite everything, we are here, happy, healthy and grateful. 

Ollie asked me to write down his Christmas Letter to Santa as he dictated it months ago. In it he asked for not only a toy for himself, but also that Santa bring something special for his sister Abby who had given him stem cells so he could live (my eyes were leaking as I wrote it). Before sending it off via Canada Post, I added a note that mommy had written what he dictated because he went blind during cancer treatment, but was doing great thanks to his stem cell transplant.

This week a package arrived from Santa addressed to Ollie & Abby. There was a lovely letter for Abby (even though she never wrote him one) that noted that she was a true hero because of  her "overachieving stem cells". It also mentioned Ollie's CNIB Buddy Dog Hope! Clearly the Canada Post volunteer elves did their research and knew our story! 

In addition and inspiring my tears again was a letter in Braille for Ollie. He was so excited to receive it written in a way that he could read it! Many thanks to Canada Post and their amazing volunteer elves helping Santa to reach ALL kids! 

To close, please minimize or cancel your gatherings to reduce your risk of COVID. I know it's tempting to see everyone you planned to, but we'll all pay for it in early January when stats are even worse. Even if we don't end up in lockdown again, we'll likely end up home with online learning again if we can't control cases over the next 10 days. Trust me, when you're together with your immediate family or just a few trusted loved ones, the holidays can still be beautiful. Wishing you all safe and happy holidays.  Praying that 2022 is a better year for everyone!