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.