Bubble Family and a CNIB Dog

Radiation planning happened last Friday. It was a difficult morning because Ollie was feeling stressed. Although he'd been to Princess Margaret Hospital for radiation planning before, this time he was not sedated. All they really needed to do was take a CT of him on his back with his head to one side and his front with his head to one side, but he fought it every step of the way. 

For the total body radiation that he'll have twice a day for three days next week, he'll be on a mattress on the floor. They basically "tent" the radiation beam over his entire body. Twenty minutes on his back, then he can take a break, go to the bathroom, stretch or whatever he needs for a few minutes, followed by twenty minutes on his front doing same. He cried that he couldn't be on his stomach with his head turned to one side for 20 whole minutes! He did eventually get the 3 minute CT done on his front last week, but it was a battle. 

So we've been practicing at home since and that little devil insisted on doing it for the full 20 minutes the first time with no problems then or since! He'll be fine once we get into the groove, but I'm not looking forward to the twice a day and having to lie around in a room in the Sick Kids Day Hospital in between. If he feels well enough, he'll come back to our condo each of the three nights.

We've had his check up with the Bone Marrow Transplant team and his levels are good, all the tests we did last week came back clear and he's ready for transplant. I've signed a pile of consents for his radiation, chemo and transplant. They tell you all of the risks including the mortality rate from transplant (5-10%), but as I told Dr. Ali, it's not like we have another choice if we want to save him and if I had believed the statistics the last time I was with him when Ollie relapsed, I wouldn't have believed he'd have made it back here to transplant at all. He laughed and conceded the point, saying how impressive it was that he was back and healthier and stronger than the last time. I told them not to underestimate my boy.

His new hydrocortisone steroid is making him quite sleepy during the day, so he maps a lot and he sleeps only about 5-6 hours at night. We're adjusting his dosage and timing in hopes we can fix this.

Ollie's been begging to see grandparents, so Gamma (my mom) and Bumpa (my stepdad) became part of our bubble the last few days, driving up from Blenheim to spend time with us. It's been 6 months since we last saw them at Christmas. That was after round 1 of chemo when Ollie was still his active and sighted self. So much has changed since then, but not our joy at being with them.

It's the first time since COVID that any of us have touched or hugged anyone but our little family. The kids were so happy. And I was grateful to have my mom with me. As a mother going through one of the most difficult things one could imagine as a mother, I have found myself often wishing that my own mother lived closer. She has been a constant support through this, calling and texting almost daily, reminding me to take care of myself too, her and Carl sending packages and money regularly for whatever we need. 

She's told me more times in the past 9 months how strong I am and how proud she is of me than I think she has my entire life. I've been a strong and independent woman since I left home for university, always wanting to do things on my own. The few times I have asked my mom for help (mostly to come and care for the kids for a few days when we didn't have childcare, when I had Ollie, etc.) she always agreed to come. Every time we have invited Gamma and Bumpa to meet us somewhere for a vacation, they have. 

They are excellent grandparents and my children adore them. This visit didn't disappoint either. They arrived loaded with groceries and many gifts from my aunts and cousins. 

They were simply happy to do whatever we needed and the kids wanted while they were here. From my always hustling and bustling mom taking time to play Beyblades and Connect Four with Ollie...

...to them both patiently learning Braille while professor Ollie taught them, Gamma and Bumpa made time for what is most important. They took walks with Abby and asked Ollie many questions about his Beyblades so he could demonstrate his expertise.

Bumpa has infinite patience and was great at giving Ollie clear directions to build Lego. And I can tell you it is not easy to give a blind person specific instructions that help them to see with their hands...especially with something as small and intricate as Lego. 

Abby was so happy to be with them, too. She's getting better about her fear around COVID thanks to working on it with her social worker. 

We assured her before Gamma and Bumpa came that they were socially distancing and wearing masks everywhere in public and that Chatham-Kent had less than a handful of cases left and had only ever had a few dozen in total during its height. 

She was happy and silly during their visit and my heart felt happy to see her being a normal kid.

Bumpa is also pretty great at bringing out their silly sides...

We also had our phone interview for the CNIB Buddy Dog Program on Monday. We were fascinated to learn more about the Guide and Buddy Dog Programs, especially the fact that most of their dogs are bred in Australia, placed with families in Canada to be socialized and conditioned before actually being trained as Guide Dogs in Carleton Place, and that the CNIB pays for all of their food, vet bills, etc. even when they are finally placed with their ultimate owners! We were shocked, but grateful and intend to be regular donors to CNIB when we're both back to work.   

We made it onto the waiting list and they offered us the chance to meet one of their dogs in the Ambassador Program. Given Ollie is psyched about getting his Buddy Dog and we know the next weeks will be long and difficult, we want to bring him as much joy and stimulation as we safely can this week, so we agreed to meet Ziggy the Dog and Audrey his handler today. 

Audrey was so kind and patient. It was easy to see why the CNIB chose her to be a host family for Ziggy and later an Ambassador in the Ambassador Program when they discovered that Ziggy had hip displasia that counted him out as an actual Guide Dog. 

Ollie was pretty happy to have the experience. Everyone asked a ton of questions and Audrey patiently answered them all. Since we come from a big family of animal lovers, we all enjoyed the experience.

Ziggy also brought Ollie a little Buddy Dog stuffy (and then promptly licked it causing Ollie to laugh) to remember the visit. 

We're all pretty excited about this opportunity for Ollie now and feeling more comfortable about the resources available to make Ollie's unsighted life easier going forward.

Ollie also got a package of rare Beyblades today, so was pretty happy overall despite having to say goodbye to the grandparents this afternoon.

Abby got a silly dinosaur night light that is apparently all the rage on TikTok and YouTube these days. 

Before they left, Gamma and Bumpa were full service guests, washing their bedding and remaking the bed before leaving. My Energizer Bunny mom had also vacuumed and washed all of the floors yesterday while I was at the hospital with Ollie and Mario was working.

So we are feeling loved and grateful for family, while knowing we have many many more in Chatham-Kent and in Western Canada who wish that they could come and help, too.

We have no more hospital visits this week, but will be at the hospital every day next week prepping for transplant.I find it so surreal that we are back and a week away from transplant. Please God, keep him in remission while we get to transplant.