Safe arrival and Sick Kids Hospital orientation

We made it to Toronto with the help of our dear friend/honorary brother, Vic who followed us all the way in his own vehicle to make sure that we had help if needed on the journey. 

Ollie was fantastic on the road trip. We stopped only twice in out of the way places to pee and get food. I was so relieved as I worried that the journey would be painful for him.

Abby tried to put herself in a diabetic coma with a "dream donut". She wanted me to document below how she's practicing social isolation.

I was so grateful that we had Ollie's commode so he didn't have to go in public and because we couldn't find a place that was open to pee since we avoided the Onroute rest stops (which looked way less busy than they looked on Tuesday this week when Abby and I came back to Ottawa from Toronto). 

Vic drove behind us for 4 hours, helped to move us in, then hugged us all (we insisted despite social distancing as we know he and Jenna have done everything to help us to keep our family safe and together over the last 6 months and would never put Ollie at risk) and headed home to be with his own family. 

Our village is incredible and he and his family are top of the list of those that we love and trust with even our child's life. 

So we're settled in our condo in downtown Toronto just blocks from Sick Kids. In fact, here is Abby today in front of our condo building coming back from her appointment and Sick Kids is across the parking lot with the green roof. So we couldn't ask for a better location.

Earlier this week before the road trip we also used some of the money that was fundraised for us to buy equipment such as the commode already mentioned, urinals and this new lightweight transport/wheelchair, which we'll get a lot of use out of for back and forthing to the hospital in the coming months. Naturally we bought it in Ollie's favourite colour.

So at least we're well equipped for this next part. At times like this I am especially grateful to my mother who taught me to be prepared for any food emergency. We came with a ton of food, not knowing how long it might take to get groceries delivered. It's good that we did as so far I have been unable to get a date and time for delivery.  

This is just some of the food we brought! Note the chips at Ollie's request! LOL Thank goodness we have lots as a kid on steroids (part of his chemo treatments) eats continuously. A typical breakfast includes: shepherd's pie or pasta (weird, right?!) and sometimes both, toast with butter, blueberry mini muffins, some cheesies and milk! Can't imagine what he'll.eat when he's a teenager!

We also brought coolers with fridge and freezer stuff. Much of it is delicious food that you'd all made for us that we were unable to eat all at once, so we froze it and have brought your love-filled nourishment with us. You continue to support us even here and we love you so much for it!

Yesterday was our first big day at Sick Kids. It started with a 7:15 am appointment at Princess Margaret Hospital to do Ollie's radiation planning. Given it was raining/ snowing Mario decided to drive us the few blocks over to the hospital so Ollie wouldn't get chilled from being wet. We didn't want to leave Abby even sleeping in a strange place for too long, so he went right back to the condo to be with her. Naturally Google took us to the wrong door for Princess Margaret and there was no wheelchair ramp on that side. Thankfully a staff member at Mount Sinai Hospital next door was kind enough to walk us through their lobby to the other side to get access to the Princess Margaret Hospital wheelchair ramp without having to walk all around the building in the rain. Everything is under construction over there, so it's a veritable maze right now, too. 

Once we whipped through screening we found our way to the clinic. I have to say that everyone is kind to you when you are with your kid who has cancer. Given his bald and bloated head it's pretty easy to see our situation right now. 

A representative from Sick Kids met us at Princess Margaret and brought some welcome gifts for Ollie including a new radiation buddy whom he has named James to remind him of one of his best friends at school.

Ollie was anxious waiting to get in to have his sedation for his radiation planning. It sounds strange that he'd need sedation to plan his radiation, but this entailed several steps. For example, they had to make a mold of his face that hardened into a mask to be used during his upcoming 9 sessions. This is to ensure that he is always in the right position for radiation. They also tattooed a tiny blue dot on his head where the beam will aim for his head radiation. We've been joking that his dot is really an elaborate tattoo if you look at it under a microscope. Here he was shown what the mask would look and feel like.

 

It seems funny to joke about your son being radiated, but you get used to the strangest things when going through all of this. Thankfully it's low dose radiation for only a few minutes each time. He'll be outpatient for the three days of head radiation, and admitted for the three days of total body since he has to have two sessions a day for those days.

Radiation is now planned to begin April 9 and end April 15. Stem cell transplant is now scheduled for April 16. 

In recovery after his radiation planning, as usual he was ravenous. He had asked for Timbits, so that's what he got. Normally patients don't want to eat right after anesthetic, but not this guy. The nurses marvel about how much he can eat right after.

After this we were escorted back over to Sick Kids Hospital underground to head to a pulmonary function test to see how his breathing was post chemo sessions. We had 25 minutes to kill so he went to Subway at Sick Kids and had a ham sandwich, a cookie and chocolate milk. LOL

 

Note: we are still in possession of adequate supply of antibacterial wipes and are wiping EVERYTHING down before we touch anything in public. Plus wearing masks and gloves everywhere, shedding clothes to put in laundry as soon as we get back to condo and constantly washing and sanitizing hands to stay safe.

His breathing test went well, but the docs said it is hard, so he complained of shortness of breath all morning after, despite the doctor checking him out at his consult with his bone marrow transplant doctor, Dr. Ali. He also had bloodwork done. 

Just like at CHEO there is a lot of waiting. Unfortunately we have not yet met any Child Life Specialists unlike Ottawa where you meet them from the start.

At the end of all of this, Ollie was quite exhausted and begging to go "home"'. So Mario brought Abby to the hospital and took Ollie back to the condo. As we were making the switch if kids in the lobby of Sick Kids, we could see that this was concerning too many staff. I explained our situation that they are both patients...One the recipient and the other the donor and now I was staying with the other for appointments. They thanked us for our patience as I went through screening again with Abby this time.

Abby's appointment was simply a chat with her bone marrow transplant team where they confirmed all her other tests came back excellent. She's an excellent student in every aspect of life it seems with normal or above average results in everything. They confirmed she was still prepared to do the donation and talked to me about consenting to store her stem cells for her brother as they are now freezing them two weeks prior to the transplant, just in case. This is the new protocol for all stem cell transplants given COVID-19. Interestingly enough Abby even talked about donating again when she's older to save someone else. After all she explained, if she could save her brother, she could help someone else without a match in the future, too. Someone else so didn't have a brother or sister who could save them. My heart nearly burst. I have said before that my children are the most important thing I'll likely bring into this world and leave behind and they are proving me right daily.

The last thing was Abby needed to leave a urine sample for testing. She'd never done this before and had a really hard time. She's a camel at the best of times and can hold it all day! So we went down to get some lunch at her favourite, Jimmy the Greek (right in the hospital near the Tim Horton's!), drinking tons of water. When I tipped the people at Jimmy the Greek and thanked them for risking themselves to feed us, they were shocked and so happy for our acknowledgement. Please be kind to all people serving us through this pandemic. They definitely don't make enough to risk themselves and their families like this, but have few options.

After lunch, she was finally able to pee. Trying to deliver it back to Sick Kids in the clinic was bizarre. We were told by reception to take it back to the Blue Pod (every corner in clinic has a colour). But no one there seemed to know Nicole nor care much to help us figure out what to do with it. Another example of why smaller like CHEO is sometimes better. We finally left it at reception despite their protocol, asking them to page Nicole in her meeting to come and get it. 

We walked the two bucks back to our condo and had a lovely and quiet evening eating, doing laundry and watching tv. The simple life never felt so good! Two days off doing nothing now and then back to the hospital Thursday for both of them for Ollie's lumbar puncture and Abby's first injection of the GCSF which I'll explain more in a future post.

For now, know that we are together, safe and as happy as we can be right now. Please stay safe and stay home as much as you can. People like Ollie are depending on you. Love to all!

Home for our hero

HOME. A great four letter word. One of the best ones. Second only to LOVE. 

After a whirlwind of 47 days at CHEO where he had a relapse, got lymphoma in his brain, went blind, had incredible pain, likely had seizures, was in ICU for over a week, had two brutal rounds of chemo and a new PICC line inserted. Then only 36 hours at home when suddenly he was back to CHEO for 16 days to fight 3 infections, shed most of his skin from chemo, painful bed sores, major bruising all over his legs, arms and torso, removal of his new PICC due to infection and implantation of his broviac in his chest. He's so weak, physio is necessary to rebuild his muscle.

Now home for a mere 24 hours before heading to Toronto tomorrow for preparations for his radiation and stem cell transplant. Ollie and I will be in Toronto for 3 months. Abby and Mario will be with us at least a month until transplant and possibly longer depending on COVID-19, work and school.

On the one hand this seems incredibly unfair that we get one day at home together after the last two hellish months, but on.the other, home is literally where the heart is and mine is with my husband and my children no matter where we are. I've always said that you can make a home anywhere. I have my parents to thank for this. Although they were divorced when I was young and we moved a lot, I got used to making home wherever I was. I found comfort in my loved ones being around me whether it was at my mom's, my dad's or my grandparents' house. It was never about the physical place. Always about who I was with. 

Interestingly enough, Abby wrote a beautiful piece recently for a writing competition about what home means and that's exactly what she said, too. She said our house felt quiet and empty without Ollie and I, and that home was wherever we were all together, even if it was in a hospital room. I'm trying to get her to post the piece to this blog as it was beautiful.

So as we prepare to leave our home for months for a short term condo rental in Toronto to get a lifesaving transplant where my daughter will save my son, I don't give a fig where we will be physically as long as we're all together as much as we can be. 

So in this time of social distancing or isolation when people are feeling caged, restless, bored, confined, stressed, maybe even agitated by your loved ones, think about how much we are grateful for this or any time together. Don't take this time for granted. Stay home and love each other. Enjoy time together. Talk to each other. Be present. Practice gratitude. This time is surreal, but so much more precious than you can imagine. 

I leave Ottawa sad that I won't see any of you for months, scared of what is coming next, but grateful that we are together and will get Ollie well so we can come home whole again. Wishing you all well and sending you all love.

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.

The Antidote to Corona virus Anger

I am mad at the coronavirus and those who do not self-quarantine because they'll be inconvenienced by the loss of a couple of weeks of their time. We've already lost so much more time living a normal life, because of cancer and now we have to fear another risk to our son's life. And I have to worry about my daughter not getting sick so that she can save my son. 

This anger bubbles up and threatens my tight grip on sanity the last few days. Then I see the rare moments where my son is still joyful or smirking at something he finds amusing and I think if he can still find reasons to not be angry and depressed, so can I. He is my primary reason for letting go of the moments of anger and frustration because I do not have energy to waste on negativity of any kind.

I feel for everyone who has to be off work or arrange activities for their kids for extra weeks, but is the right thing to do to protect everyone right now and it could literally save my son's life. Given all of his sacrifices it seems fair everyone has to sacrifice a little right now. Sorry...I don't mean to wish bad things on any of you...Just want people to understand that we're all in this together and need each other's help for survival.

On the physical side, his damaged skin has miraculously begun to heal thanks to an amazing cream called Triad recommended by the wound care team. It's still hard to see it all peel off of him, but he is doing better. 

Not to gross you out, but as we were cleaning off the miracle cream his skin was literally coming off like this.

And once cleaned his new beautiful skin was revealed as though he was a beautiful butterfly emerging.

He will also need to have another lumbar puncture with intrathecal chemo tomorrow (Tuesday his back was too raw and they feared infection)  and he has a ton of scans and consults next week, but we'll get through them.

Our video conference today with Sick Kids Radiology team went well. Starting to feel routine...side effects very similar to chemo...low dose of radiation (9 treatments in 6 days) so shouldn't be harder than chemo they tell me. Nice group of doctors. 

So we're gearing up for one more week before the next battle in this war. We meet them in person early morning on Monday, March 23, so there's little time from expected discharge from CHEO on March 20 to having to head to Toronto March 22. 

Keep sending your positivity and prayers of strength. We all need strength right now (not just our family) and are praying that all of you will remain strong, healthy and will continue to be good to each other through these uncertain times the way that you have all been so kind to us these months. Big love to all of you!