Marie "Condo"-ing

We made it back to Toronto! The journey was uneventful for the most part and we are again grateful to our brother from another mother, Vic for packing us up and following us in a van with our belongings and moving us in, all while wearing gloves and a mask.

Our condo is nice and more modern than the last one, with the added bonus of an extra bedroom. At about 1100 square feet, it's still a lot smaller than our house, but it's comfortable and a block away from the hospital, so perfect for our needs. 

Toronto is busier than it was two months ago, but still not normal. Abby seems more comfortable this time, though and choosing a condo half a block away from the old one was a good decision. Ollie didn't want to stay in the same building as last time as he had bad memories of the relapse and wanted a clean start. We'll do anything to keep him mentally healthy as we go through this next challenge.

Abby got into the unpacking, putting all of our clothes away, Marie Kondo-ing them as she went. LOL

She picked a cosy little room off of the kitchen that would likely be truly considered a den. It's central to the living area, which will be good for keeping her engaged with the family since in typical tween fashion, she often wants to be in her room alone.

She brought a few things to personalize it and we bought a few things at the dollar store to make it feel like home for her for the next few months. I remember my parents moving a lot when I was a kid (they were divorced and one liked to buy, fix up and flip houses and the other was a real estate agent), so I got really good at making my new room feel like home wherever I was. 

We've lived in our house in Ottawa for 15 years this fall and I never imagined Abby would have the experience of trying to make a new place feel like home during her childhood. She's had a lot of new experiences because of cancer. Hopefully they will make her strong and adaptable her whole life, although I pray she never needs those qualities for a challenge like this one again.

She's also gotten into fresh smoothie making daily. It helps us to stay healthy and gives her something productive to do each morning, too. They're delicious so far!

 

Ollie has had his stressful moments, but has mostly been okay. Friday's radiation planning was tough as he was being obstinate when they tried to do his CT. They do the CT on his back with his head turned and then on his stomach with his head turned. When they did his stomach he screamed and cried- saying he couldn't keep his neck turned to that side for so long. Honestly he can do it, it's just that when he becomes fearful of something or has had enough he refuses to try. 

The technicians and the coordinator, Rita, were lovely and helped us through it. He did get it done in the end, but it made me nervous as we'd decided to do the two times daily radiation without sedation to make it faster and easier for him. If he has the sedation he'll have to be NPO (no eating, only sips of clear fluids allowed) from midnight until about 5:30 pm. That's because they need 7 hours with an empty stomach before sedation and his radiation is at 7:55 am and 3:30 pm. He'll be a bear if we have to do things that way! 

He says he'll work at stretching his neck next week and try it without sedation, but if he can't, it will likely change the timeline on everything and we NEED him to get the treatment and transplant ASAP. The good news is Ollie ALWAYS gets the hard stuff done. As much as he blusters about things he doesn't like, he never gives up. 

Mario is doing alright. He's holding on to that crazy beard until Ollie gets his transplant. Superstitious. He's been calmer this time settling in to Toronto. We both feel more confident, less fearful and more determined than ever that we are getting that transplant and leaving here with a child in true recovery after an agonizing year. 

He's still working from home thanks to his organization still being closed and his boss being so understanding. Friday a kind friend and colleague of his brought the family some Roti and jerk chicken. It was delicious and a lovely change.  

 

Ollie slept a lot yesterday and that worried us. His sleep patterns have been off at night lately, though so he's pretty tired at times during the day. Thankfully having consulted with some kind parents in the UK (thanks Lisa and Julia!) who have already been through this with their kids who have the same cancer, we believe it's due to finally stopping the Dexamethasone steroids this week after 5 months on it constantly and starting on the new hydrocortisone. The hydrocortisone should help to restart his own production of a natural steroid (cortisol), but so far has given him acne, dry skin and some minor mood changes. 

Given this, yesterday was a rough day, peppered with a few bright moments. Between worrying about how much he was sleeping (always fearful that lymphoma is back in his brain and trying to take over) and the online funeral that Abby and I attended for little Malcolm, we were pretty spent by end of day. 

Before the funeral though, a sweet friend from my youth, Frances and her son drove from the Hamilton area to bring us fresh preserves and canned pears. A true taste of home. When we were here last time and I was in the hospital with Ollie when he relapsed, she sent me the most beautiful survivor story and message of hope about her incredible daughter. She told me that miracles DO happen and that her daughter was daily proof. That was what I needed to hear at that moment. A heaven sent message that helped me to keep going when I felt all was lost. 

And she was right. It's a miracle that despite the odds he got back into remission and is here to get that transplant. Miracles happen. We don't need another miracle, just stability and strength enough for him to get through transplant and get truly well. We can do this.

I think maybe she was sent to me again yesterday to bring me strength just before we attended little Malcolm's online funeral. Like informal spiritual strength being brought to me. I'm surrounded by strong mamas who have done the hardest things and got through them and so can I. 

I've never attended a child's funeral before and I pray to God that we never have to again. It was a beautiful service, but that little white casket was devastating. His parents are so strong. Especially his brave mama. But she knows she has two other children that still need her. One of them still in her belly. She feels grateful to have been his mama. Not angry (although that may rightfully come later) at him leaving too soon, but pure love at having had him for any length of time. She is so kind that on the day her son died she also wished us well in Toronto and asked us to keep her posted on transplant because she wanted to know and Malcolm loved Ollie. Mamas are the bravest warriors, soldiering on and spreading light even in their darkest moments. 

Abby insisted on watching with me. She's an empath like me and felt it deeply, especially as she knew Malcolm has an older sister who just lost her brother. I tried to comfort her, telling her little Malcolm was too little and sick to fight the tumour after battling for 7 months and that I can't believe God would make Abby the stem cell donor for her brother, make him relapse, get him well again for a second attempt at getting her stem cells and not let her save him. Then I backtracked a bit to tell her if it doesn't work it's not her fault and she's done everything she can. It's hard not to give her mixed messages right now. I can only reassure her that I feel deeply that we are on a journey to remind people what's really important in these difficult times and to share our faith for those who may need some right now.

I apologize as I don't want to make it seem like I am hijacking nor exploiting Malcolm's story or his family's pain. It's just agonizingly a part of the cancer journey and as I try to be truly honest about what it's like, I must also include the things that impact us and our mental state, even if they are part of someone else's story. You're going to know some people who don't make it despite their brave fight. When it's a child, I think it's universally understood that it's so much more tragic and how could we not be affected by this beautiful family's story?!

So last night when Ollie finally woke, refreshed and full of energy, we were so grateful and played blindfold NERF gun target shooting with sticky darts with him. The blindfold was to even the stakes for Ollie given his blindness. We played in teams and gave directions to the blind/blindfolded person to help them hit the target and get the points. Ollie was thrilled, especially since he won.

Overall we're feeling okay and resting up this week for next week's radiation and chemo. We are studying plays so we have some tricks up our sleeves when we need them and readying for the big game in which we intend to come out the victors. Please keep cheering and praying for us. It pumps us up and makes us eager for battle.