Readying to approach home base

Ollie is feeling cheeky lately and working his vulnerable situation to his advantage, begging us using his poor little cancer boy sad face when he wants something. LOL

When Abby and I were braving the pandemic in Toronto, Ollie was getting stronger and healing. His neutrophils are way back up now and his infections have healed. He is getting out of bed more now and even danced one night when McKenzie was here and encouraged him. 

He had his broviac implanted on Wednesday at the same as he had another lumbar puncture with intrathecal chemo for maintenance. 

 

The broviac replaces the short lived larger PICC that had to be taken out shortly after being inserted due to a bacterial infection in the central line. He's been managing for the last week with a temporary IV called a long, but they were able to take that out yesterday. 

His belly looks pink from the cleaner/antiseptic that they used in his surgery, but overall his skin has healed well, he no longer has pain and he's feeling so much better.

He's also sleeping a lot better and he is back to smiling more, especially when he's being mischievous. I still long to hear a spontaneous big belly laugh from him. The kind we really took for granted before and would do anything to hear again. Childhood is supposed to be about laughter, noise and mess. I can't wait to have that again. Funny what you miss...

I finally solved our temporary housing problem by renting a short term condo down the street from Sick Kids Hospital for all of us to be together safely pre-transplant. We are so grateful to all who have contributed to the fundraising efforts for us, as you have have made it possible for us to keep paying our bills at home, while also having this dedicated space in Toronto. 

Given the fact that the experts are now saying that it could be months before it's safe to return to daily activities and other provinces have suspended school indefinitely, we may well be in Toronto together for a longer haul. In fact, Ollie's transplant date has now been pushed back a week to April 16 with him being admitted on the 11th, while Abby's harvesting has been moved up to March 30 and they now intend to freeze her stem cells. We believe this is partly due to a new protocol due to COVID-19 and partly to ensure that she is well before giving it to Ollie. 

Either way it means (barring any other major changes) that our family will finally be all together for two weeks before the next part. I wish that this was going to be at our own home, but Ollie has outpatient appointments in Toronto from March 23 on. So we will treat it as a staycation in a different city. The kids are disappointed that they cannot swim in the building's pool, but social distancing aside, we can't take the chance of any of us getting sick.

So we have a bunch of incredible friends and neighbors who will be at our place constantly to spend time with the kitties, and generally take care of things for however long Mario and Abby will remain in Toronto. Packing is all but done. We'll be ready.

Tomorrow Ollie has an MRI, Saturday he should finally get to come home for less than 24 hours before we leave to face the apocalypse again!

More to come...

Girl Power vs.the Pandemic

She did it! Despite being in Toronto in the midst of a global pandemic with all of the extra stress that it caused, we got it done. 

Sonya came with us at Abby's request and I was glad to have her moral support. We were screened upon arrival at Sick Kids Hospital to ensure we weren't unwell. 

Hematology/Oncology is on the 8th floor and the Sears Clinic is their equivalent to CHEO's Medical Day Unit (MDU). It's predictably much larger than CHEO's with a huge waiting/play room. 

We were met by Nicole who had been on my previous video conference with Sick Kids. She showed us into a meeting room with a sofa and comfy chairs. Already the vibe here is very different from CHEO. Bigger, less personal, but then again maybe unfair to say that in the middle of a pandemic. We'll warm them up with our friendliness! 😃

Abby brought Llama Llama Blue Pajamas the Third with her as an homage to Ollie and the First and Second Llamas. 

Dr. K.Y. explained what would happen with the stem cell transplant and answered Abby's many (very intelligent) questions and then did a quick physical assessment of Abby. He was kind, patient and very helpful. 

Next it was off to have blood taken. Sick Kids has its own blood lab right in its Hematology/Oncology Clinic! 

The technician, Connie was lovely and so patient. She encouraged and cheered on Abby the entire time. Sonya was helpful too, telling her how brave she was. Abby was stressed, but then so was I as I held her. Not about her blood test, but just overwhelmed by all that we are dealing with...cancer, a stem cell transplant where one of my kids has to save the other, being in Toronto during a pandemic which could kill my son if he's exposed through one of us, and this morning I had received a message from our POGO Interlink Nurse, Graham, to tell me that Ronald McDonald House has now closed their doors to new patients. Anyone else feeling stressed thinking about all of this at the same time?!

So we have no home base for next week until the transplant. We have many kind offers of staying with friends, but during this time of social isolation it's now so important that we have a space on our own near the hospital, within walking distance as we don't want to worry about parking or public transportation right now. So I'm working on that now. Thankfully given the money fundraised for us we will be okay, which helps since the average cost nearby for a month is $3,900!

After the bloodwork we got a tour of the 8th floor to see the Bone Marrow Transplant ward that will be home for Ollie and I for up to two months. Staff were friendly and kind, although parents appeared stressed. There is a great, spacious and modern family kitchen. Movies and Games galore, but no playroom because here they encourage and need isolation to survive. The isolation rooms are tiny compared to CHEO's. They're seriously so small that I won't be able to even pace his room if I'm stressed or need to burn off energy. They don't have bathrooms and just have commodes as apparently in the 1990s they didn't think bathrooms were that important or sanitary. Turns out that the research has proven them wrong, and they

are planning to renovate to include bathrooms in the near future. Thankfully there is a parent washroom down the hall. 

There are many restaurants in the lobby including sushi, Subway, Smoothies, Greek, Starbucks, Pizza Pizza and others we didn't even see! 

So we had a kale smoothie (Maria Abby asked me to take this as evidence that she does like Kale in some things!) and then left the building. 

We got some amazing take out pizza at Maker Pizza, arrived back to sweet treats dropped off by dearest friend, Jenny, and hunkered down to watch movies and rest.

In Ottawa Ollie had a good day and his CT with daddy went well. Last night Uncle Vic visited and tonight Maria was dropping off his favourite mashed potatoes and taco meat.

As always I am overwhelmed by my village. People who love my children as I do and would do anything for them, like go out in a pandemic to help them with whatever they need. We can never repay the kindness we have experienced, but will certainly try when we can.

So tomorrow Abby and I will be on our way back to Ottawa for a week to close up operations there and bad ready to move our lives for the coming weeks. Mario and Abby should be back after transplant and coming to Toronto for certain weekends after. 

Hoping you're all well and symptom free with your closest loved ones.

Just breathe...at least 1 metre apart

We made it to Toronto! It's honestly the last place we want to be right now, but we have no choice as Abby has to be at Sick Kids Hospital in the morning for a physical and tests to make sure she's a good candidate to be the donor for Ollie. 

The drive itself was okay. There are still a lot of people driving on the highways. We avoided all 401 Onroute rest stops as those still seemed pretty populated despite the pandemic from Corona virus. We stopped only once in the middle of nowhere just past Napanee thinking that was lower risk. 

We sanitized the whole bathroom before using it, got gas and kept on keeping on. Along the way we saw a sign that reminded us that even when things seem bad, we need to remember gratitude. If you can't make out the vanity plate, that's what it said! 

Abby took a selfie while I drove to show one of the ways she kept busy (making bracelets). She also coloured. We sang loud and a lot. Girl stuff full of girl power. 

We made it in record time due to minimal traffic. We're staying at the Marriott Downtown thanks to a generous donation that they make to the Pediatric Oncology Group of Ontario (POGO) for families like ours. We were literally the only people in the reception area checking in. The lobby bar was vacant. We've seen no one in the hallways. We think we are the only purple staying at this 18 floor hotel. Our room was super clean, but we Lysol wiped every surface, handle, light switch, and the remote, just in case. We checked out the pool which was also eerily vacant, butt we can't risk a swim anyways. Even if COVID wasn't a concern, we can't risk either of us becoming sick over the next weeks for fear that it will affect the transplant.

It's a seven minute walk to the hospital from here. You can see Sick Kids from our room tonight.

Earlier we did go out for a walk (despite Mario's reservations for us) as apparently that is allowed as long as you stay at least a metre away from anyone else. Also, Abby has to be poked and prodded tomorrow to enable her to save her brother's life.  Despite the pandemic, she also needs to feel that something in all of this about her. Because her being the donor is about her and is everything right now.

Downtown is completely dead. We went to City Hall and there were maybe 5 people nearby. Abby is in the O below.

No skating, though, as they closed it down due to Corona virus. 

Abby found a Porsche in a color she liked. As you can see the streets are vacant of people.

 

We even walked on Younge and it was completely dead! I have never ever seen it like this. It was like we were waiting for the Zombie Apocalyse.

My sister from another mother, Sonya came to help us make an event out of it for Abby. Tonight we hunkered down in our hotel room in PJ's to watch a movie. We also had a video chat with the always entertaining Krazy Krissy who refilled us with stories of what things are currently like riding out the Corona virus in the US.

So we're safe, cosy and a little apprehensive about tomorrow. Abby is nervous about her tests and getting poked, while I am nervous about getting in given the new screening measures starting at the entrances of both Sick Kids and CHEO tomorrow and about figuring out a whole other hospital again. I'm also nervous about interactions with others considering we don't really know who's walking around with it unknowingly. 

But as I told Abby, we'll take only calculated risks and do everything as safely as possible. 

Abby and I had a good visit with Ollie and Mario yesterday before getting ready to go. 

Mario and Ollie are now safely tucked in at CHEO. The last few days have been busy with visitors who have been so very careful to only come if they are as certain as they can be that they have not been exposed to anything. 

We are so grateful to his teenage friends in particular who always come when he asks. He knows he can't have kids under 14 on, so he's smart enough to know to ask for the teenagers who are the next best thing and are so good and patient with him. When I see Mackenzie or Catherine or Alison with him, I am certain that the future is in good hands with these amazing young people around.

The good news is his neutrophils are back up, although he does have to have some minor chemo this week as insurance to keep the lymphoma out until his radiation starts April 1.

So I'm signing off to get some sleep as Abby was quite stressed last night and we need to get some sleep tonight for the first step in what is likely to be one of the biggest things she'll do in her life...and she's only 11 so far. 

Stay well and away from each other as is needed to keep everyone safe. Praying that you all stay healthy.