Day 0 (Transplant Day) and Day +1

Transplant Day, also known as Day 0! 

Ollie was in good spirits on Monday, July 20, 2020, which we'll hereafter always think of as his transplant birthday. It's a new birthday to celebrate because it is a rebirth. Physically his body is being regenerated with his sister's cells. He gets a second chance that many will never get and today we are very aware of this and also doing it for those who became angels far too soon like our friend little Malcolm.

With apologies to my friends in science and medicine for my simple explanation that follows...

When Ollie's new stem cells graft and his sister's cells take over in his bone marrow he'll actually have her DNA in his blood! His cheek swab DNA will be different though. When you have two types of DNA in your body it is called a chimera. They will do chimerism tests on Ollie over the next 3 weeks and after as needed to see how much of his stem cells vs. Abby's are present to determine when he's fully grafted.

He'll also likely have her blood type eventually and his XY chromosomes will likely appear as XX because she is female as he is getting her cells. He'll still be all male, but the science of this is wild! It's like an episode of CSI!

We weren't sure we'd ever get here despite our positivity and focus on this goal. Statistically, after relapsing in his central nervous system (CNS) twice it was more likely that he wouldn't get here, but as always our determined boy beat the odds and made it back.

Dr. Alexander, who is Ollie's oncologist here at Sick Kids and treated us when he relapsed last time, stopped in to say hello yesterday before the transplant. I teased her that we were happy to see her and happy not to have seen her before today this time! Last time we saw her I told her I didn't care what the statistics say and not to count Ollie out because she didn't know how strong and stubborn my boy was and we'd be back. I could see on her face that she was remembering that conversation and was genuinely happy that he made it back. 

Maybe he'll restore some of her hope for the kids she treats. She's an excellent doctor and very caring, she just has a tough job being the expert in pediatric Anaplastic Large Cell Lymphoma (ALCL) in Canada and she sees the worst cases, Ollie included. That has got to make you a bit more sceptical about their likelihood of survival. It was kind of her to stop in and wish us well. 

About mid-morning we were moved from his regular hospital room into one of the isolation rooms in the Bone Marrow Transplant (BMT) Unit. 

The isolation rooms for bone marrow and stem cell transplants are small! Maybe 11' x 11' with a sink, but no actual bathroom. This is apparently a 1990s design throw back, which they now regret. Because there are no bathrooms in the rooms and no HEPA system in hallways and the rest of the unit, patients are basically in this "cell" until they've grafted. 

Sick Kids is planning a brand new stem cell and bone marrow transplant unit in their yet to be built Peter Gilgan Centre that is expected in 2029. In the new one they apparently plan to ensure that the entire unit has HEPA and will enable patients to move more. The physiotherapist already came to see us today about keeping him moving in this tiny space so that his body doesn't become deconditioned. We've worked too hard the last few months via virtual physiotherapy to get him strong again and don't want to go backwards.

Two isolation rooms are attached to a common clean room. You enter the clean room and wipe anything down you are taking in with antibacterial wipes and use hand sanitizer each and every time you step in or out of the room. Yesterday I am certain I used hand sanitizer about 50 times and washed my hands about every hour. No exaggeration.

There is a parent lounge with a shared fridge (in the regular rooms you have your own mini fridge, but not in isolation). At least this is now open after COVID restrictions are loosening up somewhat, but only one person allowed in the kitchen at a time.

Abby's cells were frozen due to COVID and a preservative was added to keep the cells alive. For the transplant they had to be thawed and timed perfectly. It still cracks me up that they deliver them in a beer cooler.

Here is half of her beautiful gift to her brother and all of us. The other half remains frozen and at the ready if he doesn't graft this time. In that situation, one month from now he'd get the second half, so really if needed (and we hope it's not) we DO have another second chance at this transplant. For those of you who didn't follow us back in March or missed it, you can read about Abby's donation of stem cells here or watch her video here.

They gave Ollie Benadryl and Tylenol 30 minutes before transplant to avoid any allergic reaction to the preservative. 

I thought I'd be more emotional and weepy when he got them, but I honestly just felt so relieved and happy that this day had actually come. 

We video chatted with Abby while it was happening so she could be part of it, too. 

It was a bit anticlimactic as the transplant doctors promised. Just like a blood transfusion and took about 20 minutes. We all sighed in relief when it was done as it's been 4 and a half long and scary months since we first heard he was going to need a transplant and so many big challenges to overcome to get here (not the least of which were relapse, using Abby's cells instead of a perfect anonymous donor match and COVID-19).

Ollie didn't have an allergic reaction, but his gag reflex kicked in when he could taste the preservative in the back of his throat as the transplant happened and he threw up. 

His blood pressure was also a bit low, but they chalked it up to the Benadryl and transplant and within the first hour it came back up. This is nothing compared to watching your child fight to survive in ICU. 

After that he was okay and just sleepy.

The view from our room shows the construction zone for the new Sick Kids Patient Services Centre. Thankfully it's quiet despite that and at least we get some natural light every day.

Abby has insisted on marking the occasion (as she does all celebrations) with cake, so I left one mini cake at home for her and Mario and took one to the hospital for us. Unfortunately Ollie was too nauseous, so I ate a piece for both of us! 

Today is Day +1. Ollie has been in good spirits, although has been nauseous off and on all day. It's hard to know if this is due to transplant or a side effect of the radiation and chemo this week. His little body has been through a lot. Thankfully a new Beyblade that he opened today (a Takara Tomy made Union Achilles for those of Ollie's friends who are following along and will be asking) kept him pretty happy despite not feeling 100%.

He slept a lot less today, but couldn't eat much so they've started him on Total Parenteral Nutrition (TPN) where they give him necessary nutrients through his line directly into his vein. Part of the reason he doesn't want to eat is nothing tastes right after radiation and chemo and he's now somewhat afraid that he'll throw up anything he tries.

His pump now looks twice as large and scarier. This is a short term bridge until his nausea passes and he can eat more. In the meantime we'll keep offering him solid foods and hope that in the next few days we'll no longer need the TPN. He's never had it before as the last time he should have when he was in ICU and so sick, he had 

Syndrome of inappropriate antidiuretic hormone secretion (SIADH) where he was retaining water and his sodium levels were crazy and being heavily controlled, so they couldn't give him the TPN for fear of causing other issues and he didn't actually eat anything in 17 days. That was scary. 

We have worked out that I'll stay with Ollie most of the evenings because Mario seem has to work by day from home and 2 nights a week Mario will stay overnight to give me more time with Abby. .

In the meantime he comes up late in the afternoon each day for a few hours and I've been going to the condo to have dinner with Abby and maybe take a walk or sit outside on the terrace (far away from others) that they have in our building

Abby likes to do gymnastics there in the play area as it has a rubber ground cover. And then she super sanitizes her hands. 

So far so good. Other than the nausea he is well, no fever (although they tell us this is highly likely sometime in the first three days post-transplant). On day +4 he'll get more chemo to make absolutely certain that his cells are no longer kicking out those lymphoma cells. They also give him another med that ensures hers continue to graft. More on this when we get there!