Safe arrival and Sick Kids Hospital orientation

We made it to Toronto with the help of our dear friend/honorary brother, Vic who followed us all the way in his own vehicle to make sure that we had help if needed on the journey. 

Ollie was fantastic on the road trip. We stopped only twice in out of the way places to pee and get food. I was so relieved as I worried that the journey would be painful for him.

Abby tried to put herself in a diabetic coma with a "dream donut". She wanted me to document below how she's practicing social isolation.

I was so grateful that we had Ollie's commode so he didn't have to go in public and because we couldn't find a place that was open to pee since we avoided the Onroute rest stops (which looked way less busy than they looked on Tuesday this week when Abby and I came back to Ottawa from Toronto). 

Vic drove behind us for 4 hours, helped to move us in, then hugged us all (we insisted despite social distancing as we know he and Jenna have done everything to help us to keep our family safe and together over the last 6 months and would never put Ollie at risk) and headed home to be with his own family. 

Our village is incredible and he and his family are top of the list of those that we love and trust with even our child's life. 

So we're settled in our condo in downtown Toronto just blocks from Sick Kids. In fact, here is Abby today in front of our condo building coming back from her appointment and Sick Kids is across the parking lot with the green roof. So we couldn't ask for a better location.

Earlier this week before the road trip we also used some of the money that was fundraised for us to buy equipment such as the commode already mentioned, urinals and this new lightweight transport/wheelchair, which we'll get a lot of use out of for back and forthing to the hospital in the coming months. Naturally we bought it in Ollie's favourite colour.

So at least we're well equipped for this next part. At times like this I am especially grateful to my mother who taught me to be prepared for any food emergency. We came with a ton of food, not knowing how long it might take to get groceries delivered. It's good that we did as so far I have been unable to get a date and time for delivery.  

This is just some of the food we brought! Note the chips at Ollie's request! LOL Thank goodness we have lots as a kid on steroids (part of his chemo treatments) eats continuously. A typical breakfast includes: shepherd's pie or pasta (weird, right?!) and sometimes both, toast with butter, blueberry mini muffins, some cheesies and milk! Can't imagine what he'll.eat when he's a teenager!

We also brought coolers with fridge and freezer stuff. Much of it is delicious food that you'd all made for us that we were unable to eat all at once, so we froze it and have brought your love-filled nourishment with us. You continue to support us even here and we love you so much for it!

Yesterday was our first big day at Sick Kids. It started with a 7:15 am appointment at Princess Margaret Hospital to do Ollie's radiation planning. Given it was raining/ snowing Mario decided to drive us the few blocks over to the hospital so Ollie wouldn't get chilled from being wet. We didn't want to leave Abby even sleeping in a strange place for too long, so he went right back to the condo to be with her. Naturally Google took us to the wrong door for Princess Margaret and there was no wheelchair ramp on that side. Thankfully a staff member at Mount Sinai Hospital next door was kind enough to walk us through their lobby to the other side to get access to the Princess Margaret Hospital wheelchair ramp without having to walk all around the building in the rain. Everything is under construction over there, so it's a veritable maze right now, too. 

Once we whipped through screening we found our way to the clinic. I have to say that everyone is kind to you when you are with your kid who has cancer. Given his bald and bloated head it's pretty easy to see our situation right now. 

A representative from Sick Kids met us at Princess Margaret and brought some welcome gifts for Ollie including a new radiation buddy whom he has named James to remind him of one of his best friends at school.

Ollie was anxious waiting to get in to have his sedation for his radiation planning. It sounds strange that he'd need sedation to plan his radiation, but this entailed several steps. For example, they had to make a mold of his face that hardened into a mask to be used during his upcoming 9 sessions. This is to ensure that he is always in the right position for radiation. They also tattooed a tiny blue dot on his head where the beam will aim for his head radiation. We've been joking that his dot is really an elaborate tattoo if you look at it under a microscope. Here he was shown what the mask would look and feel like.

 

It seems funny to joke about your son being radiated, but you get used to the strangest things when going through all of this. Thankfully it's low dose radiation for only a few minutes each time. He'll be outpatient for the three days of head radiation, and admitted for the three days of total body since he has to have two sessions a day for those days.

Radiation is now planned to begin April 9 and end April 15. Stem cell transplant is now scheduled for April 16. 

In recovery after his radiation planning, as usual he was ravenous. He had asked for Timbits, so that's what he got. Normally patients don't want to eat right after anesthetic, but not this guy. The nurses marvel about how much he can eat right after.

After this we were escorted back over to Sick Kids Hospital underground to head to a pulmonary function test to see how his breathing was post chemo sessions. We had 25 minutes to kill so he went to Subway at Sick Kids and had a ham sandwich, a cookie and chocolate milk. LOL

 

Note: we are still in possession of adequate supply of antibacterial wipes and are wiping EVERYTHING down before we touch anything in public. Plus wearing masks and gloves everywhere, shedding clothes to put in laundry as soon as we get back to condo and constantly washing and sanitizing hands to stay safe.

His breathing test went well, but the docs said it is hard, so he complained of shortness of breath all morning after, despite the doctor checking him out at his consult with his bone marrow transplant doctor, Dr. Ali. He also had bloodwork done. 

Just like at CHEO there is a lot of waiting. Unfortunately we have not yet met any Child Life Specialists unlike Ottawa where you meet them from the start.

At the end of all of this, Ollie was quite exhausted and begging to go "home"'. So Mario brought Abby to the hospital and took Ollie back to the condo. As we were making the switch if kids in the lobby of Sick Kids, we could see that this was concerning too many staff. I explained our situation that they are both patients...One the recipient and the other the donor and now I was staying with the other for appointments. They thanked us for our patience as I went through screening again with Abby this time.

Abby's appointment was simply a chat with her bone marrow transplant team where they confirmed all her other tests came back excellent. She's an excellent student in every aspect of life it seems with normal or above average results in everything. They confirmed she was still prepared to do the donation and talked to me about consenting to store her stem cells for her brother as they are now freezing them two weeks prior to the transplant, just in case. This is the new protocol for all stem cell transplants given COVID-19. Interestingly enough Abby even talked about donating again when she's older to save someone else. After all she explained, if she could save her brother, she could help someone else without a match in the future, too. Someone else so didn't have a brother or sister who could save them. My heart nearly burst. I have said before that my children are the most important thing I'll likely bring into this world and leave behind and they are proving me right daily.

The last thing was Abby needed to leave a urine sample for testing. She'd never done this before and had a really hard time. She's a camel at the best of times and can hold it all day! So we went down to get some lunch at her favourite, Jimmy the Greek (right in the hospital near the Tim Horton's!), drinking tons of water. When I tipped the people at Jimmy the Greek and thanked them for risking themselves to feed us, they were shocked and so happy for our acknowledgement. Please be kind to all people serving us through this pandemic. They definitely don't make enough to risk themselves and their families like this, but have few options.

After lunch, she was finally able to pee. Trying to deliver it back to Sick Kids in the clinic was bizarre. We were told by reception to take it back to the Blue Pod (every corner in clinic has a colour). But no one there seemed to know Nicole nor care much to help us figure out what to do with it. Another example of why smaller like CHEO is sometimes better. We finally left it at reception despite their protocol, asking them to page Nicole in her meeting to come and get it. 

We walked the two bucks back to our condo and had a lovely and quiet evening eating, doing laundry and watching tv. The simple life never felt so good! Two days off doing nothing now and then back to the hospital Thursday for both of them for Ollie's lumbar puncture and Abby's first injection of the GCSF which I'll explain more in a future post.

For now, know that we are together, safe and as happy as we can be right now. Please stay safe and stay home as much as you can. People like Ollie are depending on you. Love to all!