Tuesday and Wednesday were great days! Relaxed, with no place to be, we had the chance to finally breathe a bit and enjoy just being, without stress.
Tuesday we just had a quiet day, enjoying being together and not taking for granted the precious moments of being a family after almost 2 months apart.
Ollie took a tour of the condo to get familiar with it and get some exercise. We watched tv and rested.
Wednesday, Ollie felt really well and even got up on his own and started exploring.
It gave me a bit of a heart attack since the kid had barely been out of bed the last 2 months, but he had lots of strength and energy and wanted to practice the skills that the staff from the Canadian National Institute for the Blind (CNIB) had shown/explained to us in recent weeks when we met with them. When he is motivated to do something, nothing can stop him.
One of the things they told us to practice was recognizing tactile differences as Ollie needs to use his hands as his eyes now and understand the differences between how things feel to be ready to learn Braille. We've been practicing this matching textile game, but he wasn't happy about it.
He did want to help me make pancakes yesterday, so he walked himself into the kitchen and I sat him down so he could help.
And we all sat down to the first real family meal we've had in almost 2 months.
He was pretty thrilled with himself and so were we. Mario was like a new parent excitedly watching his child take his first steps. It felt like that again and Ollie's pride in being able to do it made his face so radiant that I wish I had gotten that photo.
He was pretty tuckered out after this and had a rest.
It's pretty great being so close to the hospital and saves us major time and gives us peace of mind that we can be there in mere minutes. Here is the view from our balcony. The building with the green roof is Sick Kids Hospital.
Thursday was a big day in that Ollie had a meeting with his new oncologist, Dr. Alexander, who is the Canadian expert in pediatric Anaplastic Large Cell Lymphoma and one of the key people that our CHEO team had consulted with when they discovered that Ollie had it in his cerebral spinal fluid in January. She was so lovely and kind. She really talked to Ollie and tried to understand his needs, just like our CHEO oncologists, Dr. Abbott and Dr. Pinto.
As a side note, we said goodbye to our CHEO oncology team the week before arriving in Toronto. Dr. Abbott was going on mat leave and gave me the biggest hug (despite the COVID situation that had just started to heat up in Ottawa) and promised me we'd be in good hands at Sick Kids. Dr. Pinto had done same and encouraged me to send her e-mails on progress and told me she'd look forward to seeing us when we were back. These women have held my hope and faith in their hands for 6 months and handled it so beautifully. It's not just a job, but a true calling and I can already tell that Dr. Alexander is their kindred spirit in this.
Ollie also had a lumbar puncture with intrathecal chemo again Thursday. We were put in a very old school hospital room in 8D in the Day Hospital. I felt like (tv and computer aside) I was in a 1970s/early 1980s hospital. Ollie was insistent that he was not lying in the bed because there were germs everywhere right now. COVID is definitely leaving an impression on him. I had to promise him when we come to stay for his stem cell transplant, we'd bring our own sheets.
At Sick Kids they do their lumbar and bone marrow punctures in a dedicated room, whereas at CHEO they're generally done in the general procedure/OR rooms.
At CHEO no one ever liked to see Ollie in his Toronto Maple Leafs pajamas, butt here they were psyched to see it!
The procedure took only about 20 minutes and he was taken to recovery right on the oncology floor. The nurses were shocked by how quickly he woke and wanted his cheese pizza, which I had run down to get while he was having his LP done.
He wanted Daddy in recovery, so we switched kids since it was time for Abby to go and have her first of 5 injections of the G-CSF to stimulate her production of stem cells to push them into her blood stream for collection for her brother on Tuesday. Ollie went home to the condo with Daddy after recovery and ate more pizza! The steroid he is on continues to make him eat like a machine.
And the boys needed a nap after so much excitement.
Meanwhile, I took our stem cell donating warrior for her injection. We hung out in the Sears Oncology Clinic and ate some lunch while we waited. She's now addicted to kale smoothie!
Afterwards given it was her first injection, she had to stick around and be monitored for an hour in case of reactions to the medicine. She was put in the same exact room as Ollie has been in earlier in the day.
I had a few moments of feeling overwhelmed and in awe of what my beautiful and kind girl was doing for her brother and all of us. I've always said that I honestly don't care what my children grow up to be as long as they are kind. I can't imagine she'll be more so than now. She honestly could do nothing else with her life and I'd still feel like she'd done the most worthwhile thing ever (of course, I know my motivated and bright girl will still go on to do many incredible things, but this one will be hard to top). Naturally Nurse Janice came in the room to bring cookies as I was wiping away tears and insisted Abby share some with her brave mama, too.
Nurse Cathy finally came to check her vitals and set us free.
So Abby did it! Not only is she conquering her fear of needles and blood, but she's also she brave to be doing this in the middle of a pandemic for her brother. We are so very proud of her!
She'll now get the injection every day until Tuesday when they'll harvest her stem cells. She may get achy and have bone pain from the injection. Possibly headaches or flu-like symptoms as definitely fatigue. We watched a helpful video with her last week to see what that part will look like and you might like it, too. She has vowed to create her own perpheral stem cell transplant video for kids and to post it when done, so we'll share it.
The day is not yet done as I post this, but I'll share the other development in another post later today!
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