Fighting the Bah Humbugs

Wow! December 1st already! The days have been so busy that I haven't had time to write anything in over a week. It feels foreign not to write now. Like part of Ollie's story is being omitted, but truthfully, he is doing so well and the story has become kind of routine for now.

 Other than routine bloodwork and check up at CHEO every second Monday, he's only had a pulmonary test last week. Ollie was super calm and sailed through it no problem. His breathing and lungs look normal and so much better than when we last did this at Sick Kids. He was relapsing the second time then before his first failed attempt at getting the stem cell transplant and he had major shortness of breath. So no permanent damage to his lungs now! Yay!

We're still eating a lot of Ollie's Pizza from Gabriel Pizza, only lately it's customized online to add pepperoni to it, too! If you are in Eastern Ontario and haven't tried it yet, there's still time and don't forget it helps Candlelighters Ottawa to help families like ours fight cancer.

There's still exciting moments like receiving an unexpected package from Louise from Brampton (Google her!) who has been so kind to Ollie and Abby as one of her many random acts of kindness in honour of the little innocents taken too soon at Sandy Hook. The package came at just the right time for Ollie who was feeling "glum" about Christmas this year. Even though he's well he knows we can't see family this Christmas because of COVID-19.  

We did start decorating for Christmas. Neither of the kids have been into it much this year. I'm really trying to bring the Christmas cheer, but so far it's a slog. Wish me luck!

Funny thing is last year at this time we were in hospital for 12 days for round 1 of chemo. AND Ollie landed back in hospital for 4 days just before Christmas with an infection, only getting home on December 23, but Christmas was still joyous because Gamma and Bumpa came. They helped us to bring some festive atmosphere and to squeeze whatever joy we could out of it even though cancer was still new for us. In an incredibly bizarre way, last year was one of our best Christmases because we took nothing for granted and simply tried to find joy in anything we could.

So we're slowly injecting Christmas. Like putting up my Grandma's tree from my childhood.

And setting up our usual artificial tree,  thank goodness as we wouldn't be allowed to have a real tree anyways with the need to keep bacteria, mould and mildew away from Ollie's still developing immune system. I am grateful right now that we have very few plants and most are cacti.

 

So our tree is up, but not decorated yet because I want the kids to do it with us and they're not feeling it yet. Maybe we'll each add one item to the tree each day and talk about the ornament's significance or why it brings joy until the tree is decorated...in the meantime, Chewbacca has claimed it.

This one cracks me up...still wearing the Halloween shirt and now grudgingly adding the elf hat...

The past week Ollie has also be practicing with his cane on the many mild days we've had. We learned a few things. First that the repair at the end of our street obstructs the lines Ollie and other blind people need to tell them they're getting close to the end of the sidewalk. Thankfully when I contacted our City Councillor about this, he and his office staff immediately agreed to get the City to fix this ASAP and to put up a solar-powered speed radar in hopes that will slow cars down on our stretch to make it safer for Ollie. We are grateful to Jeff Leiper and his team for their assistance in keeping our Ollie and all blind and low vision people in our neighborhood safer.

We also learned that to make the audio signals go at the traffic lights, you have to hold the button for 5 seconds. There is Braille on the button that tells you North-South or East-West directions. There's also often a big tactile arrow now to further assist blind and low vision people in knowing which button goes which way. Then there are different audio tones for North-South (Cukoo-Cukoo!) and East-West (Chirp! Chirp!)! Mind blown! I never thought to wonder why there seemed to be different tones!

Ollie's still working on becoming more independent. He can now use this

pouring device to pour his own drink and know when it's getting to the top! Once the liquid reaches the prongs on the inside of the glass it starts beeping and buzzing. It scared poor Ollie the first time and he spilled his milk! Second time was the charm, though and he's mastered it now.

With a little help from his vision itinerant teacher he just finished reading his first full Braille book on his own! My how far he's come for a kid who just started learning Braille this summer!

She also sent him a tactile ball with a tether he straps to his wrist and now he can play catch with me or toss his ball against the wall and easily find it again! He LOVES it. Laughed out loud in glee the entire time we first tried it.

And we commissioned our dear friend Sohail (who is a talented welder and metal fabricator) to make us some railings for the deck and front porch to make it easier for Ollie to go up and down confidently without assistance. This will be helpful when the epic accessible play room out back is ready (big reveal to come early in the new year!).

Abby is liking online learning a bit better now that they're doing more interactive things like science experiments (wish they teach them to clean the kitchen after!) and they're using online breakout groups and she's getting to know some of the kids in her class better. She currently has only two friends from her actual school in her virtual classroom.

And she's still helping Ollie to do karate and actually benefiting from it herself, too.

The last few days she just felt like dressing up, so she did and put all of us jeans and track pants wearing folks to shame.

Mario is super busy at work. Still working from home mostly with the odd day where he has to go in for a contractor to do work or to pick up or drop off a piece of equipment. His days are longer than normal, but I know he's trying to make up for the many days over the past year where he put in shorter days to come to hospital to see us or to be there for big procedures and tests. We are grateful for the flexibility of our employers and the fact that they never had an issue with us prioritizing our son's health over work. It's shocking to me that some employers would not be as understanding to an employee with a sick family member.

As for me, I'm good most days. Some days are great, like this one where we played in the snow completely joyously, without worry about Ollie's health. Others are overwhelming and hard. I've finally finished the paperwork and obtaining documents for my next EI claim and my LTD claim. Service Canada advised me to go for both at same time and decline one of I get both. Hopeful we get one as my 35 weeks of caregiver are now done and I am without income. Thankfully I also got our taxes done with the help of our terrific accountant, so the return from last year should help us bridge this period. We are grateful that we have not had to take on much debt to-date as a result of the generosity of people and support from charitable organisations. 

I also had an interview with the new chair of the parent advisory council for Hematology and Oncology at CHEO and the Director of Hematology and Oncology. They're looking for new members and I'm thrilled to be joining them. As it happens, we met the chair while inpatient on 4 North and she's currently at Sick Kids with her daughter who had a bone marrow transplant almost three weeks ago. She was so kind to me and told me that she'd been referred to our blog when she was looking for current info on BMT. She said she'd been afraid of BMT, but started reading and found it so helpful that she read the entire blog! She told me that she felt I was writing exactly how she felt and what she experienced with her daughter's journey and she was at least one person helped by what I wrote. I was in tears. As she said, we are bonded in the same club that none of us ever wanted to join. I got a message from her today that her daughter's counts are going up and she's engrafting! More happy tears! I have an overabundance of these lately.

Mentally we all have our moments. Break downs, outbursts, sensitivity, overreaction, unexplained sadness or depression, anger...they come at the most bizarre times, but thankfully we seem to be taking turns as opposed to all melting down together. LOL The therapy is helping and even Ollie seems to see the value in it. We bumped into our social worker last week at CHEO and when she asked how he was feeling, he told her angry and sad sometimes and maybe he should come and see her. She immediately said she would and asked me to set up a time. 

He's a different child emotionally than he was a year ago when he NEVER wanted to talk about his feelings and it was a revolving door of social workers, psychologists and psychiatrists trying to talk to him over the past year. This tells me he's going to be okay because he wants to be. He knows he'd rather be happy and the only way to get there is to get the bad feelings out. If only adults understood this as well as he is starting to.

I'll likely write more later this week to finally share what Abby's been up to with CBC. Stay tuned!