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!

Second chances

Thursday was Ollie's final day of Total Body Radiation at Princess Margaret Hospital. The morning session went smoothly with no issue at all! We said goodbye to the very sweet Susan (she coordinates radiation at Princess Margaret for the Sick Kids patients) who had a clinic to run at Sick Kids and so would miss our final radiation session. For health care workers like her it is more than just a job and I was impressed by her dedication to the kids and families she serves.

Ollie and I went to Tim Horton's at Princess Margaret as a treat on our way back to the condo. Given he was doing well and they knew how much he agonized while waiting, Susan and the Sick Kids Nurse practitioner had arranged for us to skip a clinic visit if he was feeling alright.

Back at the condo he was pretty well. He was not interested in eating much, but that's normal with radiation. So we watched cartoons and built Lego mini figures while Daddy and I finished readying everything for his hospital admission tomorrow.

Ollie will be in the Bone Marrow Transplant Unit from Friday morning through until he's well enough to leave (at least 6-8 weeks if all goes according to plan). Although he'll be in a regular hospital room there for the next three days until transplant on Monday, we need to prepare things for his isolation room now. 

This means sanitizing anything and everything we'll be taking in, and as much as possible taking in brand new things. Anything we take in from the outside has to be double bagged so that when we enter the clean room attached to his room we take the exterior bag off and throw it away, and sanitize anything inside of it again. So by double bagging you get rid of the outside germs and can wipe down the inside bag and take it in with everything washed and sanitized from home untouched before going into the isolation room. We bought antimicrobial bags that cost a small fortune to be throwing away, but we are taking no chances. One wall of the isolation room is also a HEPA wall that keeps the air clean and bacteria free. This is serious business.

The condo we rented this time has a full-size brand new washer and dryer. I have been, and will surely continue to be glad of this since we need to heavy duty wash everything often, including bedding at the condo to keep bacteria at bay. The crazy part is we all have bacteria that lives and grows in our skin, in our gut and pretty much every part of your body inside and out. So imagine trying to avoid bringing bacteria into his room! Impossible! 

But we have no option but to try to reduce as much as possible, as he'll have no immune system for the next 3 weeks or more and the smallest virus or bacteria could be life or death for him. That's the part that I find scariest...that unknown, evil presence that I cannot see, feel or smell. Like COVID-19, but amplified a hundred fold in its likelihood and danger for him.

When we went back to Princess Margaret yesterday afternoon I thought the last session would be easiest. Ollie was pretty sleepy so I figured he'd sleep through most of it.

And he did...until we had to flip him onto his front to radiate his back.

After we woke him to do this he was unbearable. The first head and shoulders treatment is 10 minutes, then they move the bed, do 4 minutes for torso, then move the bed again and a final 4 minutes of feet. From the start of the ten minute treatment he cried and screamed that he couldn't lie on his tummy or turn his head. We had to stop the machine repeatedly, go in to settle him or reposition him after he moved in anger and continue on. After he finally got through the ten minutes he refused to go on and do the last two parts. 

Thankfully the technicians helped me by assuring Ollie that they'd stay all night if needed to get it done and no one was leaving until it was done. I tried understanding mom and tough mom, but neither was getting through to him. I took deep breaths to keep my cool, stepping away to let the very patient technicians try to convince him.

Finally, exasperated with all of us, Ollie shouted at us to just get out and get it done! Normally I'd make a big deal about not shouting and treating people badly, but we all just wanted to get it done. So we got out and went into the booth where I decided to talk to him on the speaker about a package that we had ordered of what else, but...Beyblades. As soon as I got him talking about their technical specifications it was like a switch got turned off and his anger, pain and impatience were gone.

The four minutes whipped by and we easily moved the bed and got him settled for the last part with me asking him a bunch of other technical questions about the differences in Beyblades. Thank God I know more about Beyblades than I ever really wanted to know. The last four minutes sped by and he was allowed to move his head and arms for the last part so no more complaints. Beyblades for the win!

After his treatment, they helped him fill the last square in his radiation chart with a super hero sticker and asked if he wanted to bang the gong. He wasn't sure because he was tired, but I encouraged him to do so because it was a big deal to have finished it, and he never got to ring the radiation gong in Ottawa. 

So I fiddled with Instagram to go live with the gonging at Abby's request since she and Mario couldn't be there. She missed the gong at CHEO at the end of Ollie's treatments in the oncology wing because she had been at school and didn't want to miss this one.

At the end of his gonging he was pretty pleased, but still muttered, "Radiation sucks." Truer words were never spoken and are now recorded for posterity. LOL

He got a lovely bag of gifts from Susan and the team, including some thoughtful transplant gifts for all of us. There is no budget for this stuff at any kids hospitals, so they all rely on donations. Susan had told me that one of her adult patients started doing a toy drive for this on her birthday three years ago and each year since had a car load of donations. Sadly that lovely woman passed away from her cancer a few weeks ago and Susan just picked up the last batch, which her family had collected in lieu of flowers for her funeral. When we are done here I plan to see what we can do to fill that gap and keep paying forward her generosity for future Sick Kids' radiation patients. So friends in Toronto who keep asking how you can help, hold that thought because I will be asking eventually and will need local assistance.

When Daddy and Abby picked us up, we went back to the condo and hung out together for a bit, but Ollie was in bed quite early as he was spent. 

Mario and I had a chat, talking quietly about the things we were afraid of and reassuring each other that we've been through so much worse already, made it through and we will this time, too. We've always talked a lot to each other, but never as openly about fears and stress as we have these last few months, so we've obviously learned a lot from Ollie's journey, too. We still forget sometimes and have meltdowns, but there's an even bigger and stronger tie that binds us now and allows us to be more vulnerable with each other than we've ever been in our almost 16 year relationship.

I finished packing and spent time with Abby before bed. She was very sad and worried. So we tried the Worry Box exercise suggested by the psychologist and took turns writing worries down and put them in a box to be shut away before bed. 

"I'm worried that...

...the transplant won't happen...won't work...will make Ollie very sick...that he'll give up...that we'll be too tired too make it through...that one of us will get sick and pass it on to him...that COVID will take him even after transplant...that we're not strong enough to survive all of this..."

Don't get me wrong, we're confident most of the time that everything is going to be fine, but as strong and determined as we all are, we all have moments of fear and doubt. I believe that's what Ollie's freak out about his last radiation session was. He knew that by completing radiation it meant he was going to be admitted for chemo and the Bone Marrow Transplant as he knows it will be months in hospital again. The psychologist told me that freak outs are actually healthy (who knew?!) and help the kids to get out all of their big emotions rather than bottling them up and not facing their fears.

Friday morning we got up, got Ollie and ourselves bathed (he was too tired last night) and readied to go to the hospital for 8:30 am. He tried to tell us he wasn't going, but we told him let's just do one thing at a time and see where we get. We teased him and joked with him and soon he wasn't fighting it anymore.

We woke Abby to say goodbye and it was hard for me to see how they clung to each other...each like the other was a life preserver in a turbulent sea. Then she went back to bed, which was easier than staying up alone and feeling sad when we left her behind for a couple of hours. We are grateful to be just a block away from the hospital so she is not alone for long.

Thankfully with COVID restrictions reduced, two parents can now be with admitted patients, so we drove the  over to bring all of the stuff up. When we pulled up to the parking garage, the security guard asked if we had an appointment and Mario said, "We're here to get our son's stem cell transplant." and then it really hit me that we're here and it's really happening. I felt a moment of simultaneous elation at the fact that we made it back from the abyss of double relapse and a complete panic at what we were knowingly now driving back into. Fear. The Unknown. 

I teared up, took this pic and then prayed for strength and hope to return. I took three deep breaths and heard a voice inside my head (was it me?! God?!) say, "You've got this. This is IT."

Admission was easy and Ollie was practically chipper. He talked the nice nurse's ear off while she took his vitals and answered our questions.

He was delighted to try a sitting scale! He's lost 3 kilograms since they took him off of the Dexamethasone. 

He was content to chat with Daddy about Lego while we settled in.

A doctor from oncology whom we'd seen in the ER last time and was so patient and kind is now doing her fellowship in BMT and remembered us! She checked Ollie out and answered a bunch of our questions before rounds.

When she left with a promise to come back, I read all of the materials...stuff that would be helpful to get BEFORE admission and I wish they'd just post online!

The boys built some Lego while I read.

Mario went back to the condo to be with Abby and work for the afternoon. 

They started Ollie on rapid hydration to prep for chemo.

The transplant doctors came to review the plans and drugs. 

Ollie's chemo started and took about an hour. He was relaxed and happy. What a difference 9 months, 4 rounds of chemo, more than 30 lumbar punctures, 19 sessions of radiation, and over 100 days of being inpatient at hospitals has made!

The pharmacist came and went over in detail the new meds that he'll be getting and answered questions. 

Ollie felt some nausea, which we managed with Ondanzatron and Gravol and he slept part of the afternoon.

The social worker, Sonia came to see us and welcomed us saying how happy she was that we made it back. It felt great having two staff here remember us and be so kind. I think my poor mental health last time didn't allow me to give people here a fair chance, so I'm glad to be here to have a second chance to get to know them.

Since we're not in isolation yet, Mario came back at dinner to let me go back and eat with Abby. I did a few things at the condo, got some more food to eat in hospital and went back.

Ollie had thrown up twice, but had more meds and was feeling better although tired. 

He's peeing every hour due to the rapid hydration used to clear the chemo out quickly and protect his organs. It's been a while, but it's all coming back to us now.

He asked me to get in bed with him, so I took this pic. 

In the blog I wrote when we were last admitted here in April with relapse I took another pic in bed with Ollie. I was crushed and trying so hard to hold it together. The pic was raw and I felt that way. Bruised and beaten. Today we are back. Stronger. Ready. Hopeful. Happy. Grateful.

Last days of radiation and freedom

Just a quick update tonight...4 radiation sessions down and 2 to go!

He was a champ today and got the radiation done without issue. In between we went back to the condo and he rested, but did have some nausea and didn't eat much all day. So we just kept him hydrated and comfortable. 

Same again tomorrow and it's our last day as outpatient for at least 2 months. We're all feeling hopeful, but also a bit sad that we're going to be apart again. The kids are sad that they will not likely see each other in person for the entire time that Ollie is admitted because of COVID and precautions. Especially hard for Abby without whom we wouldn't even have the lifesaving stem cells.

She and I had a virtual therapy session with psychologists from Sick Kids today and were impressed with their ideas and solutions-focused approach. We'll have a few more online in the coming weeks to help us with our stress related to all of this.

Ollie was sad today thinking about being admitted starting Friday morning, but knows we need to do this to get well and we're so close to being done with treatments.  

Mario and I are working out how we'll manage the switching out and are focused on how we minimize the risk of bacteria and infection for Ollie. That's the scariest part for us. You can't see bacteria or viruses and it's everywhere. Yet we need to keep it away from him and ourselves to ensure his survival the next 4 weeks until the cells graft and his new immune system starts functioning. 

I'll elaborate on how we'll be doing this on Friday when we've settled in.

Until then, know that we're packed and ready for admission and to finally kick lymphoma out for good. We're all breathing deep and dreaming big positive dreams of a cancer-free life together again with Ollie joyful and carefree and able to have most of his old life back. We know it'll never totally be the same and frankly we can't go back to the way things were before because we are all changed by this. But we can have an even better new cancer free existence together because we'll never take our health or being together for granted after all of this. 

T Minus 6 days

It's the first R-day and it's now T minus 6 days to transplant. Last night Ollie actually slept all night, for 14 hours (we've finally figured out what's happening with his sleep, but more on that later) so he was in a great mood this morning and ready to tackle radiation. 

I've been so afraid that he'd relapse again before we got to this point and have been emotional and filled with gratitude for everyone who and everything that got us to this point. 

We were met at Princess Margaret Hospital by Susan, the Sick Kids radiation coordinator. She's been doing this job for 32 years and honestly knows everything about how to get kids through radiation. Last time we didn't get to meet her because she was on vacation when we were there for the original radiation planning. Today she told me how pleasantly surprised she was when we made it back after relapse. Another indication of how rare it is to get a second chance at this.

She is the perfect blend of sweet and tough. She knew exactly when to encourage Ollie and when to be tough with him to get him to do what was needed and was a huge help to us today. The team of technicians were also helpful and kind to Ollie. Given he had two sessions today he had two different teams, but Susan was there both times, so it was a long day for her, too.

Ollie was very relaxed in the beginning and very cooperative. The treatment is done in 6 parts. Three on his back (head, torso and legs) and same on his front. He easily got through the first 10 minute treatment on his back, but when we went in to shift his bed to do his torso he got upset that it wasn't already completely done!

It took a bit of convincing, but we finally got him to calm down and finish the treatment.

Susan had a radiation chart and puffy superhero stickers (so that he could feel them since he can't see them) for Ollie to mark off each of his sessions.

 

After the morning session we walked back over to Sick Kids to be checked out by the Bone Marrow Transplant Unit's Nurse Practitioner. She was happy that Ollie's vital signs were fine and he was feeling okay. She said because of this and the fact that we are living only a block away, after he had his dressing changed we could go back to the condo until we needed to go back to Princess Margaret for his 3:30 pm session.

He was not happy about the dressing change...

...but as usual he got the hard thing done and we went to our home away from home...

...where we snuggled and rested all afternoon.

At 3 pm Mario drove us back at Ollie's request because he was pretty tired.

During the afternoon session they had to do some quality control, so they taped some little ziploc bags with microchips on them to his chest and later his back. These will apparently measure the dose the machine is giving him to ensure he gets the correct amount. He was not thrilled about taking the tape off, but it comforted me that they're doing QA.

He slept through the first three scans on his back this afternoon, but wasn't happy when we had to wake him to flip him to do his back. After convincing him to just do it and go back to sleep, he finished the last three, sleeping again. 

Daddy and Abby picked us up (it was already after 5 pm!) and we got home to find a package with the next book in The Dragon Masters series that generous friend Jennifer sent to him! So we read two books and snuggled some more. 

Daddy also finally agreed to shave his overgrown cancer/COVID-19 beard (which the kids and I have crowned, the "Bacteria Beard" given how often it catches food! Ewwwww!) for Ollie because he was a radiation champ  and has been asking him to shave it. 

This made us all happy! 🎉

Tonight he was feeling a bit nauseous so he's taken meds and slept. 

We did find out today that he is suffering from Somnolence syndrome. It's a side effect of his earlier brain radiation, making him super tired and not at all hungry. Susan the radiation coordinator helped us to figure it out today and said she'd inform the BMT team that this is what Ollie is experiencing.

So our strong-willed, brave, determined, warrior has made us proud, yet again. Although all of this often makes me the mean mom who forces him to do all of the hard cancer things and he gets mad at me, he is always quick to calm and apologize for his anger. At the end he always just wants a hug and to snuggle with his mama to know he's loved and all will be okay in his world soon. 

Readying for Radiation

 It's late and I should be sleeping already, but am keyed up about radiation starting today. So I am making this a quick post, but wanted you to know we're ready.

We've been finding and buying the few things we'll need for the hospital (like slippers for Ollie and Mario...who knew it would be so hard to find slippers in summer, even in Toronto?!), stockpiling supplies (sorry...not trying to be COVID hoarders, just know we'll have little time or energy to worry about little things for the next 2 or more months) and getting out for our last real taste of unencumbered time before the transplant. We've been resting as much as we can and generally trying to enjoy being together, knowing these are the last days all together for at least two months.

In our travels nearby, Abby and I were struck by the signs that our community is still with us, from seeing our own street name...

...to that of our school and parish community...

Ollie had a final clinic visit today (he was tired and grumpy since his sleep cycle is still way off) where he was given the green light and his COVID test (his 5th now, so please don't complain and wear your mask to protect yourself and vulnerable people like Ollie) came back negative.

Total Body Radiation starts at 7:55 am at Princess Margaret Hospital, then we go to Sick Kids Hospital for the day for observation, followed by a second session of Total Body Radiation at 3:30 pm today and then if he's feeling okay, we go home (to our home away from home...the condo), eat, sleep and do it all over again for two more days before being admitted for chemo on Friday.

I'll write a better, more detailed post tomorrow, but in the meantime, thanks for your lovely notes of encouragement the last few days and know that we're taking all of the strength you've given us into this next push to get Ollie well.