Another New Normal

It's been a good week. Ollie is happy to be "home" (at least in our temporary Toronto home, but I always say home is where your people are, not in the dwelling that you live in), even though Monday and Tuesday he had to be back at the Day Hospital bright and early for bloodwork. When he got there on Monday the team on 8B in the Bone Marrow and Stem Cell Transplant Unit had left him a certificate and a special gift for his strength and bravery in getting the transplant. 

They also had to check his Tacrolimus (immunosuppressant/anti-rejection drug) levels. On Tuesday his level was high, so they bumped down the dose a bit for the rest of the week. 

The great news was that he was otherwise well and didn't have to go to hospital Wednesday or today, so two "normal" days of being home. I think we've played with every toy he has here!

The first thing he wanted to do Monday was order new "transplant gift" Beyblades from It Came From Japan. The owner, David is a super nice man (thanks for the intro, Kim Aube!) and Ollie's story has touched him (he has a 9 year old boy of his own) so he had offered to meet me instead of shipping them so Ollie could have them right away (his business is an online ordering). Ollie was pretty thrilled and we've had many epic battles this week.

Abby is preparing to leave later this week, despite the fact that we're now uncertain exactly when school will start for her. So this week she and I have ventured out a bit while Ollie napped and Mario worked. She was in love with Doc Martens, so we went to the outlet to get her first pair. 

We also went to the Lego Store and got Ollie some of the Ninjago sets he can't get elsewhere. 

Lately Abby and Ollie swing from happy to be in each other's presence to bugging each other, which is a sure sign things are returning to normal for them. I'll miss the sweetness they showed each other when he was sick, though. 

This afternoon Abby and I did a whirlwind tour of Casa Loma. It was pretty dead, so a great place for a socially distanced activity in public. I was supposed to first visit Casa Loma for my grade 7 trip (and then the bus was late getting into Toronto and we missed it!!!), so Abby is about the same age as I was when I learned about it, but funny enough I never actually made it there until I was in my twenties and visiting one of my best friends for a weekend in the GTA and asked if we could go (thanks, Walker!). 

Abby enjoyed it and the kids have become accustomed to their father and I dragging them around museums, old houses and forts (last summer it was Fort Henry in Kingston and Fulford Place in Brockville) on family trips.

I'll really miss her not being with us (I miss her when she's away for a week of overnight camp!) for at least a month and am praying that things continue to go smoothly for Ollie so that we can get home and be together again soon.

Hopefully tomorrow's blood tests are good and we get to continue as we have been this week with a few less hospital visits. 

Together at last!

I was going to keep you all in suspense until later in the blog, but I'm just too excited to tell you...we've busted out! Discharged on Day +34, baby!!! Back to our rented condo in Toronto for the next month and if all goes well we'll be back in O-town before end of September! 

But I'm getting ahead of myself...getting to this point alone was eventful this week.

To encourage Ollie to eat, drink and basically be normal over the past few days, they began reducing his liquid nutrition (TPN) and fats (Lipids) and disconnecting him from his IV lines for several hours daily. He was pretty psyched to move around unencumbered, but not thrilled to be eating as so far nothing but dill pickles and chicken noodle soup tastes good to him. 

We worked on drinking water and juice and physically moving a bit more.

We made some crafts...first up was this sign that he insisted on posting on his door...

The dedicated child life specialist, Madison answered the call as always and came to play a couple of days.

Next up on the crafts was bracelets...Ollie asked me to help him find the letters to spell out...

Team Ollie! And then he made one for each of his front line team...so Mommy, Daddy and Abby all have matching ones.

He was happy just to be able to sit on the day bed (where Mommy sleeps) instead of his own and to actually wear a hoodie because he wasn't hooked up to tubes on his arm.

Yesterday he was so excited about the day's plans that he woke up at 5 am completely ravenous and wide awake. 

So chicken noodle soup for breakfast! And earphones and a movie after so mama could sleep a bit more!

This was why he was excited...Abby had been granted approval to come and visit thanks to the Patient Assistive Care Team (PACT) advocating on her behalf as the sister and his donor. They've been apart for 5 weeks now and it's been hard for both as her lifesaving stem cells fought inside of him to graft and become part of him. At a time when they're more connected than they've ever been they could not be together. All that was ending yesterday and he was over the moon to see her.

We all spent the afternoon together, reunited and so so happy. 

We played Nintendo Switch games, talked, danced, watched an Ollie rock concert, and just generally were silly together.

I loved that our nurse, Corie just took it all into stride and happily worked around us because she knew it was a special time.

Abby and I took a bunch of his stuff back to the condo last night as they had told us Ollie might be able to go home on Sunday! 

This morning at 7:30 am the boys called us to tell us he might NOT be able to come back today. His magnesium levels were low because  his Tacrolimus medication (immuno-suppressant to avoid rejection of the transplant) can have that impact. I told them that the pharmacist on the Bone Marrow and Stem Cell Transplant Unit had told me on Friday that he'd likely have to take a supplement and we'd know how much based on tests this morning. 

A couple of hours later they called back to say they were giving him a magnesium infusion and after that should be able to be discharged.

Abby and I had been frantically cleaning the condo to ensure bedding, surfaces, bathrooms, kitchen and floors were bacteria free before he came back.

Finally, we went over to get the boys. Daddy moved what was left down to the van. We had a dressing change...another shout out to nurse Corie who was so patient with Ollie and let him help to safely remove his own dressing which is normally traumatic and painful for him. 

Then Ollie wasted no time getting shoes on (his first time wearing regular shoes since May as his feet are no longer swollen!!! Stem cells are amazing!) and determinedly walking to the hall to get into his wheelchair to get out of there. 

The nurses hooted and cheered while he left including some of our many favourites like Jenn (the lovely charge nurse who suggested signage to identify Ollie's blindness to have people help him better), Corie, Liz, Lilla and Emily (sorry that we didn't get to see others like Cherie, Ayisha and Hailey). We are grateful to all of the nurses, doctors, child life specialists, the music therapist, art therapist, Clowns A. Lebut and Fern, Fred the chaplain and the entire PACT team. I was in tears leaving just thinking about what we were leaving with and all we had to get through to get too and complete this part of the journey. 

One of the nurses a few nights ago asked me about Ollie's blindness and I explained to her (the Cole's Notes version of ) all that had happened to my unstoppable lymphoma warrior over the past year. She was incredulous after and commented that they as nurses on this unit often forgot that the cancer kids have had so many trials and tribulations before even arriving at transplant. 

Getting back to the condo (after I went to the pharmacy to pick up his 9 meds and supplements), Abby was overwhelmed and hangry and arguing a bit with Mommy and Daddy. Ollie comforted her and insisted we needed to give her space to feel more in control. He's learned a lot this year about emotions and how to handle them.

About an hour after being home with us and eating a bit of pasta, Ollie took a nap.

Abby did stone of her own art therapy...

And when he woke up a couple of hours later be willingly ate some hummus and pita and drank a juice box, proving that the doctor was right and kids federally eat and drink better at home. Normalcy. So simple and so underrated.

We still have to go back to clinic tomorrow and Tuesday mornings for bloodwork as they may need to adjust his dosages to ensure the meds all work optimally together, but that's a small price to pay to be together at last!