We'll take all of the therapies!

Days +2 and +3 have been good. Ollie has been in good spirits and chatting away happily to all of the nurses who are in and out of his room. Three weeks ago I was convinced that being cooped up in a room like this was going to be a nightmare. Now, although I know we've only been admitted for a week on Friday so far, I can see he's going to make the best of it.

He's still experiencing some nausea, so they're trying to keep him comfortable with meds, but it also means he's not eating much. The TPN liquid nutrition is helping to give him the energy he needs to feel well while the stem cells are battling his body for possession. 

We've all been sleeping better the last two nights. We're starting to settle into a new normal and are more relaxed now that he's gotten the transplant and all we can do is stay calm and wait for them to graft.

On Wednesday Mario and I had a meeting with the Pediatric Advanced Care (PAC) Team while the Child Life Specialist, Maddie visited with Ollie. Like the palliative care team at CHEO, this team supports families, not just at end of life, but through any difficulties. Given they knew how challenging Ollie's path has been, that we're far from home and I've requested consults with social work, psychology, physiotherapy and virtually any other therapy they can give us to help us physically and mentally, they reached out to see how we're doing and what they can do for us. 

Essentially they told us we were doing a "remarkable" job under incredibly difficult circumstances and they gave us kudos saying that many of their patient families come to them with few coping mechanisms and they generally spend a lot of time helping them develop some. In our case, they've suggested we continue to take advantage of the social work and psychology services and suggested we try Art and Music therapies to keep Ollie busy and positive.

Today he had art therapy! I am not one who typically enjoys arts and crafts (that's more Mario's speed with the kids), but I've got to say, it was fun! He got to use modeling clay and make whatever he wanted. Naturally he made Beyblades. LOL We'll show you the finished product next week when they've hardened and he paints them. He'll have an art therapy session every Thursday. And tonight the music therapist stopped by to drop off a full size keyboard/portable piano for him (Sherri and Lucie, maybe he will be the next Stevie Wonder or Ray Charles!)! He'll start music therapy Monday and can also choose to learn other instruments (Allie, and cousin Cadence he's keen to learn Ukulele because of you!). What a phenomenal way to spend time in the hospital (although our poor neighbour, Zach and his mom may not be as thrilled)!

Thursday was another day of chemo. This may seem counterintuitive given he already had some before transplant, but it ensures that there remains "room" in his bone marrow for her new stem cells to take root and graft. He'll also get the Psyclophosphate chemo again tomorrow.

His platelets were also low (22), so he got a plasma transfusion to enable his body to continue grafting. As always I was grateful for yet another life saving gift some beautiful and generous person gave him.

I also learned today that there are different charts for who you can give and receive blood vs.plasma from. Typically as an A+, Ollie can't get AB+ blood (they stripped Abby's B cells out of her stem cells so they wouldn't be rejected by Ollie given she's AB+). But the rules for plasma are different and he can get plasma from ANY other type with his blood type. He got AB+ plasma today, so another kind soul with Abby's same blood type saved him, too. 

The Chaplain also paid Ollie and I a visit today based on our conversation with PAC about the role that our faith was playing in our day to day management of stress and how it has been enabling us to stay hopeful even on really bad days. 

Mario came tonight to stay overnight and give me a night away from the hospital. As always it's nice to get a break and to spend time with Abby, but it's always hard not to be with him. In the photo above taken just outside of 8B (which is the Bone Marrow Transplant Unit), if you count buildings on the left, the first is the wing where Ollie's room is at Sick Kids, and two buildings down from there is our condo. So I am comforted knowing that were sleeping just a short walk from each other and I could be there in less than 5 minutes if needed.

We're trying to inject a bit more summer fun into Abby's days to keep her positive. So she and I went down to the terrace to get her some fresh air and bbq dinner. It was really windy so we took silly selfies.

I am deliriously happy to report that the first three days post-transplant, when I was worried about fever and him feeling super ill post-radiation and chemo have been bearable and less difficult than I thought they'd be. 

Onward and upward to health and wellness!