Easter Blessings

What a blessed Easter weekend we've had! 

We got out of the hospital on Saturday morning after a disappointing Friday where Ollie had to stay for another day for observation. Fortunately we've learned that when life hands you lemons, you can make some pretty great lemonade if you choose to. So daddy dragged Ollie' s brand new Hot Wheels race track up to the hospital (crazy as it's 8 feet long when set up!) to bring him whatever joy we could while he waited to be sprung from the hospital. When we got home Saturday, we set it up at home and had some family races (Ollie always won!).

Ollie asked if we could have our Easter dinner on Saturday night and in the interest of bringing him (and by extension us) whatever joy we can, that's what we did. Thanks to our friends Lynn and Kerry, we had both a Turkey breast and a ham with all of the trimmings! Abby and Mario also made an Easter cake for Ollie's homecoming (thanks to our favourite little elf, Sharon for sending the Easter egg candies to garnish it!). We also had delicious foccaccia sent by dear friends, Maria, Casey, and Sofia. 

So we cooked it all and had a veritable feast. We did this intentionally because we also happened to bump into acquaintances from 4 North at CHEO on Friday at Sick Kids who are here for THEIR son Ollie' s stem cell transplant! He's little Ollie (as he's under two) and this is his second stem cell transplant. His mom was his donor last week and they're both doing well. So we were pleased to take them some of the feast, too. I tell you this not for credit, but just so you know that just as people continue to take care of us, we are glad to be able to pay it forward and share our blessings with others, too. 

Maria and family also sent gourmet donuts (pretty good, but not as good as Suzy Q's was the consensus), which Ollie has been slowly devouring over the last few days.

On Sunday morning we slept in after a late night (we were all pretty worked up and had a hard time sleeping...not uncommon for us each time there is a significant development in his health). When Ollie finally got up, we had the egg hunt his sister had been patiently waiting for. We gave Ollie some tips to help him find them and Abby sweetly held back to make sure he'd get plenty of treats on his own. Apparently they make beeping eggs for blind kids, so that's what I'll be on the hunt for before next Easter. 

Later, Abby was in her room feeling sad because everything was so different this Easter (she is the Queen of holidays and their rituals). She misses home and friends. We all do, but we had a family meeting Saturday night and decided that it is best for us to stay here for now in hopes that we'll get Ollie to stem cell transplant quicker. Even Abby agreed. Ollie was not happy, but agreed to go along with it since we reminded him that anywhere we are together can be home and at home in Ottawa we still wouldn't be able to go anywhere but home and hospital. 

When Ollie discovered that Abby was sad, he asked his daddy to help him walk to her room to be with her and insisted he was staying with her. He's always been that way when she's upset and always finds a way to make her feel better. She finally understands how loved she is by him and vice versa.

So we spent part of Sunday watching movies and taking walks nearby (with masks and appropriate social distancing). We talked to family and friends and did anything that made us happy.

We walked over to Queen's Park so Abby could see it (she was not very impressed). 

On the way back to our condo we passed the original Victoria Hospital for Sick Children. The first pediatric hospital in Canada was opened there in 1892. Plus, Mario told Abby they'd seen the building in a recent Murdoch Mysteries episode. 

Today it houses the Canadian Blood Services' head office.

When we got back we ate and played Beyblades. We capped off the night reading survivor stories submitted by friends at our request. Each makes me tear up and marvel at people's strength. They are brave, odds-beating warriors like Radley, Lynne, Liam, Lauren, Colin, Strider and Leanne's mom. Please keep these stories coming as they are building us up!

Today was more of the same, but it was pretty windy outside and we had ordered some toys from Toys R Us on Saturday for curbside pickup, so we took a drive to Don Mills. We brought very few toys with us and this was one of the things Ollie told us was making him sad, so we used a gift card sent by dear Margie to buy a few new things and were grateful to the staff there who were wearing masks and gloves and made this a safe pickup for us (we also wiped them down with antisceptic wipes before putting in the van).

We also got gas since it's the first time we've driven anywhere in the last 3 weeks ($0.73/litre!). And we found a local grocery store that was fully stocked and had all of the things Ollie has been asking for four weeks that we were unable to get. I honestly felt giddy whipping through the aisles (with mask and gloves on) and wanted to buy one of everything! This must be what it felt like after the world wars when the rationing was lifted and things were readily available for purchase again.

We're due back at the hospital tomorrow for bloodwork. Our oncologist, Dr. Alexander checked in with me by email yesterday to ensure everything was okay (confirming for me that she is kind and this is more than just a job to her) and our homecare nurse did today as well knowing we had had a minor issue with no blood return when flushing and hepronizing Ollie's broviac on Sunday. Everything was fine today, and I feel good knowing that we are in good medical hands here. 

I've also been doing some research this weekend on Dr. Alexander (went to McGill for undergrad, Harvard for medical and graduate school with 20 years experience in Oncology in the US and in Toronto) and to see the success rate of his new Ceritinib drug (very good results). I also looked at other options with respect to other possible drugs so that I know what else we might try. I have learned that I need to know about possibilities to advocate for next steps as the parent of a critically ill child. So I feel equipped again for moving forward. Onward...

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.