Together, Fed and Funny

We're all "home" (at least our temporary one in Toronto) together again! Happy to report that it was the shortest hospital stay he's had yet, at only 48 hours long. 

Yesterday while Ollie was killing time waiting to be released, Abby had her third of five injections of the G-CSF. 

She's learning like her brother that you spend a lot of time waiting in hospitals.Yesterday it took two hours because we had to wait so long for the injection to be sent up from the pharmacy. 

The nurses are super nice at Sick Kids and the atmosphere in clinic this weekend was pretty relaxed considering we're in the middle of a pandemic. On the weekends the clinic changes locations so we've now had an opportunity to see 8A, 8B and 8D in action, too. 8B is the Bone Marrow Transplant Unit where we'll be for 6-8 weeks after transplant. 8A is where Ollie was this weekend for oncology.

Finally the injection arrived, we froze Abby's arm and got the job done quickly with no fuss. For a girl who was afraid of needles, Abby has now had 7 pokes for her brother with 3 more to go and has really conquered this fear.

She has had some significant back and hip bone pain as well as a major headache yesterday, so we know that it's working and pushing those stem cells into her blood stream. We've managed the pain with Tylenol and the heated magic bag (thanks again, Toni/Mrs. H as it's the gift that keeps on giving!). She has shown a shocking ability to handle the pain gracefully considering she's always been the drama queen who wailed every time she got a little bump when she was younger. My children constantly surprise me with their adaptability and acceptance of what must be done to heal Ollie. 

After her injection yesterday, Mario and I switched, so he went home with Abby to rest. The deal was as long as he didn't get another fever (hadn't had one in more than 24 hours) and no infections grew in the blood cultures by 11 pm last night, he could go home. Generally I would have preferred that we stay overnight and leave in the morning, but Mario and Ollie were begging for him to be home, so I went along with it. 

Ollie was anxious to go home all day. We tried to pass the time being silly.

And telling jokes, which I am notoriously bad at because I always mess up the punch line, but that makes Ollie laugh anyways.

He did get out shortly after 11 pm last night and we all just crashed when we got in and slept in this morning.

I took Abby to the hospital today for her fourth injection without incident and then she and I went in search of a real grocery store nearby since we still cannot get a delivery or click and collect slot until next Sunday. As it happens there's a Metro that did not have a line up to get in and is almost across the street in College Park on the other  side of the park.

So we put our masks and gloves on, did our seek and destroy shopping mission and got back to the condo in no time. Our general practice is to remove all clothes after getting home from the hospital, wash hands, put clean clothes on and immediately wash the ones we took off. I also disinfect all groceries and remove anything we can from outside packages and immediately take them to the refuse room. It is a lot of work, but we can't take any chances.

Ollie was content to be home with Daddy playing Beyblades and he had a visit from the home care nurse to show us how to flush and hepronize his new broviac central line in his chest. Just like the PICC, we are learning to do it ourselves so we don't have to rely on home care and can reduce exposure to the outside world that way.

One terrific by-product of Ollie having cancer and Abby being his donor as well as the pandemic that keeps us away from friends and family is that the kids have had to rely on each other for support and companionship. They now have a real appreciation of each other and know how lucky they are to have each other.

She takes care of him as she did when he was just an infant before they learned to fight. 

We put fuzzy dots on the black connect 4 pieces today and she taught him how to play even though he can't see. This way he can differentiate between the black and red pieces.

These two also gang up on me to get what they want now using the sad little sick kid eyes.

And laugh when I call them on it.

Ultimately we're doing well, happy together and hoping for a good week of stem cell collection from Abby on Tuesday and mainly rest for Ollie until late next week when his radiation in prep for his stem cell transplant begins. 

A friend of faith pointed out that Ollie's transplant is now scheduled to happen on April 16, which is the feast of St. Bernadette who is the patron saint of the ill. Her name means, "brave as a bear", which we agreed is perfect for Ollie.

Recharging and Selflessness

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. 

Then he helped Daddy make scrambled eggs.

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!

Abby was nervous about the needle, but Nurse Janice was super kind and helped her to stay calm. She advised us that a bag of ice on the injection site before is the best for reducing the pain of the G-CSF as well as massaging the area around it during the injection. 

So Abby sat on my lap again and got her injection while talking to two nurses about TicToc and middle school choices. No fuss, no crying. Done quickly with just a bit of stinging. The nurses gushed at what an amazing thing she was doing for her brother and it made her feel so great. 

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. 

Of course, Llama Llama Blue Pajamas the Third had to be present.

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!