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.

The Last Battle

The last handful of days have been eventful and exhausting. On Sunday we learned that our CHEO friend little Malcolm passed just ten days shy of his first birthday. His brave mama was my first real friend at CHEO and Ollie adored Malcolm. They had learned Friday that treatment was not working and they were preparing for end of life. Gut wrenching. 

I cried so much over those three days. I mourned for a beautiful family who have fought so fiercely for 6 months, living far away from home, constantly in hospital and still always being so friendly and kind to everyone around them. I wept for little Malcolm who loved sitting on the nurses laps while playing with a calculator. We had joked that he'd be an accountant for sure! I was sad for his sister who not only lost her brother, but 6 months without her whole family together. And I tried desperately to understand why some of us get a chance to save our babies and others don't. Why was his last battle one he couldn't win and ours is win-able?

I was indebted for the chance to save Ollie before, but now I feel like we really have to do this for those that don't make it, too. That we have to fight even harder to be successful in transplant to vindicate the loss of brave warriors like Malcolm. I'm not sure how Guardian angels really work, but maybe Malcolm is now Ollie's. This thought comforts me.

So the week had already started off difficult and then Ollie had multiple tests at CHEO each of the last few days so that Sick Kids Hospital is totally certain we're ready for transplant. 

Monday's CT confirmed that there is no evidence of systemic cancer. This is a huge relief. Now we just have to keep it out of his brain until radiation begins on July 14. 

Tuesday Ollie was supposed to get bone scans done to confirm his bone density as they can see on the MRI and x-rays that his bones have thinned and suspect that he has osteoporosis from the chemo and prolonged steroid use. 

They can do a calcium infusion called a bisphosphonate every 4 weeks that will help, but this could mess up his radiation and stem cell transplant, so we have to wait until after. 

Alas, after doing the first scan (see photo below), we could see that the contrast that Ollie had for the CT on Monday was still present, so they were unable to do the baseline scans because the bones would appear thicker. Hopefully we can do them at Sick Kids next week.

The rest of the tests were rough Tuesday because Ollie was tired and grumpy and frankly, scared about transplant. This makes it all so real. 

He also had a GFR test to check his kidney function, an Echocardiogram to check his heart, bloodwork, a dressing change and a COVID test. He fought the COVID test and after many attempts to persuade him to cooperate, four of us had to hold him down while he screamed, cried and kicked. He was so angry. 

Afterwards he cried in agony and said he was so tired of being tortured and didn't want to do it anymore. In his dramatic 8-year old way he insisted he'd rather die than be sick again and not have control over his own body. I cried with him over the injustice and indignity of it all and told him I hated to force him, but we have a chance to get well (a chance some never get) and we're not going to let it pass us by. 

All the while, the empathetic child life specialist, Manon was with us and rubbed my back and Ollie's intermittently as we both cried. She and the nurse, Sue (who had been there for our very first procedure which coincidentally was a bone marrow puncture) were kindness personified and I was overwhelmed with gratitude for these strong women who help us

with the hardest things imaginable and still come back and do it all over again the next day. It takes a special kind of strong and dedicated person to work with sick kids and their families day in and day out.  They are all angels on earth.

Thankfully there have been good moments this week that make up for some of the bad. Abby participated in the Great Make A Wish Campout to raise money to help fulfill the wishes of Wish Kids like Ollie and our friend Hillary. 

The rain came, but was short lived and left a double rainbow in its wake. We raised $1,100 thanks to the generous donations of friends and family. I feel like we're always asking you to help, but you keep showing up! Hopefully going forward it'll be just this kind of help we ask for to help others instead of ourselves.

Ollie was sad not to be able to camp out, so he and daddy made a tent around his bed and had epic Beyblade battles.

Ollie also had two osteopathic treatments this week. Dear family friend Elliot Vlad offered last fall to treat Ollie for free and I admit, I knew little about osteopathy. I did some research and found that osteopathy can at the very least help cancer patients to manage pain and discomfort and relax. That was enough for us as Ollie needed all the help he could get. Elliot began treating Ollie in January, coming to the hospital and doing treatments, often when Ollie was sleeping. What we found was every time Ollie had a treatment, he'd sleep better, the next day he'd have way more energy and he'd be able to do things he hadn't done in a long time (like take a long walk or climb stairs). 

At one point Mario was with Ollie during a treatment. He didn't know Elliot that well and he is a natural sceptic, but this is what he texted me after the treatment. 

Ollie's feet and legs have been very swollen because he is retaining fluid and his lymphatic system is blocked up from the steroids and chemo. So Elliot saw Ollie Monday after his regular day at his and his wife (and our dear friend) Tamara's clinic, Life Therapies and also gave up part of his Canada Day yesterday to squeeze in another treatment. 

The difference is always impressive. Ollie hadn't walked up the stairs without assistance in days, but Monday night and since he's had no issue and says his feet don't hurt anymore. He's able to get his regular shoes on for the first time in weeks. On Tuesday at CHEO he was his old full of beans self and even his oncologist couldn't get over his energy level and how well he was moving.

Most important, Elliot has schooled us on what we can do at home to keep him moving well. Ollie is also under strict instructions to wiggle and shake his body a lot and he is happy to oblige.

I have long believed that it's generally a combination of therapies that heal us and wish that hospitals and governments that make decisions about what is a covered treatment and what is not could better understand the intrinsic value in things like osteopathy. We are beyond thankful for Elliot and Tamara (and their sweet kiddos who are friends with ours) for sharing their skills and for their ongoing kindness.

Abby has been readying to leave again, knowing she likely won't see her friends in person all summer. I am struck again by how much sacrifice she has had to make this year to get her brother well and how most of the time she accepts it with grace.

Chewbacca (the cat) seems to know that his warrior buddy is leaving again and has been his constant companion lately. Ollie is going to be so great with his CNIB Buddy Dog when our turn comes to get one after he is well!

The selfless folks at Gabriel Pizza came through with half baked pizzas to freeze and take for the journey to Toronto. Ray Skaff, Mike and team at their Vanier location on Montreal Road arranged it all and were so gracious and sweet when I picked them up yesterday. 

Also yesterday on Canada Day, I got a call from my lovely sister-in-law, Nikki to tell me that her brother and mother in Blenheim, Ontario (my hometown) had seen Ollie's Pizza on the Marilyn Denis show. So I went online and watched and sure enough, they featured it as a Good News story! You can watch it here at 35:38. So we've gone national with our little story about a boy, his pizza and helping kids fight cancer through Candlelighters. 

When I started this blog 8 months, 116 posts and almost 99,000 views ago, my main goal was to raise awareness of childhood cancers such as his very rare Anaplastic Large Cell Lymphoma. Never did I imagine that we'd go national or have followers from around the world. Mario and I were teary yesterday watching our story on The Marilyn Denis Show and we are awestruck that so many of you are interested and following along. Thank you for validating my labour of love.

So we finished packing what we could last night and fell into bed exhausted.

Today we're on the road to transplant. It feels surreal but so good to be doing this again. I feel more confident and we're all less stressed this time, knowing better what we're getting into. Ollie has been great the last two days. Getting to his place of strength where he knows that he has to do more hard things, but pragmatically accepting that he just needs to get them done. He is a model of adaptability, perseverance and determination. 

Thanks as always to our village for equipping us for this last big battle. From bringing us dinners the last weeks and sandwiches for the journey, taking care of our home and zoo of pets while we're away, offering to take Abby in September if school starts normally, packing us up, and sending so many messages telling us you're behind us, we know how blessed we are and that we've gotten this far due in large part to your love and contributions. Ottawa, we'll miss you and be back as soon as we can with a well Ollie.

Toronto, we're on our way! Thanks for already helping us by making masks mandatory in indoor public spaces starting next week! We look forward to a much better experience with you this time! 

New directions

The last few days have been "brutiful". On the one hand we had the excitement and beauty of the kindness from the Gabriel Pizza launch of their Ollie's Pizza with proceeds going to Candlelighters. 

On the other hand we've been living the silent brutal agony of waiting for results of his tests. We knew early in the week his MRI showed that his optic nerves had calmed down, but we also knew that there were unexplained spots on his leptomeninges (lining of his brain). Wednesday's optomology exam confirmed that the optic nerve had calmed down, but there were also some abnormalities they wanted to check on again next week. 

Thursday's lumbar puncture was the defining test. It seemed to go okay and Ollie was a trooper as usual. 

We got home feeling pretty happy just to be together.

Ollie had McDonald's as a treat for being so brave (as always). Thankfully he didn't choke on the fries he couldn't shove in fast enough!

The doctor called us late Thursday afternoon. Abby sat with Ollie and played word games with him while Mario and I were in the next room taking the call. 

The new drug Ceretinib is not working. He has a lot of lymphoma cells in his cerebrospinal fluid again. 

We sat on the phone hearing how this reduced the likelihood of his survival yet again and how few tools we have now to work with. We were told (Mario for the first time directly by the doctor and me for the second) that while she knew we'd been clear that we'd try anything to save him, she had to be honest and tell us that some of the options they'd look at as a team now might make him very ill and he could still die a very painful death or some might cause unexpected sudden death. I shook my head silently and cried. Wow! What a choice! Mario in his usual blunt way said let's do the next right thing and we'll cross those bridges later, but if he's going to possibly die anyways we're going to go down fighting. We agreed we wouldn't give up. 

So on that brutal note we agreed to reconvene with the whole team (Sick Kids oncology, radiation, bone marrow transplant, and CHEO) Friday to decide on next steps and they'd have a plan. I spent the rest of Thursday researching options and talking to folks on forums online about what we might try. I sent some possibilities to the oncologist to see if they'd been considered. 

We had decided not to tell the kids until we had a plan. Being in the condo together and unable to cry or rage was hard. All we wanted to do was be with him, yet each time we snuggled him or rubbed his little fuzzy head (his hair is growing back) tears appeared and we had to hold them back. I couldn't even really call to talk to anyone about it because I didn't want them to hear and sometimes even though you have the best people in your life who love you and would bear anything for you, you just don't want them to have to share this pain. By evening I felt like I'd snap in two, so I went out to try to find him yoghurt tubes (I struck out and felt a big failure at that, too).

On my walk from one store to another, I just tried to breath. I prayed. I bargained with and begged God to save him. To let me keep my desperately wanted rainbow baby who had been such a joy since he was born. I got to the park across the street from our condo and as I walked through and saw the empty and caution-taped playground I bawled. It seemed a symbol of the pain of loving our children so much. My dearest friend told me, "Love is pain". So brutifully true.

In true Toronto downtown fashion, a woman sobbing loudly in public went unnoticed or at least unacknowledged. So I reigned myself in, wiped my tears, blew my nose, threw out my tissues and mask, hand sanitized, put a new mask on and kept on going to look for yoghurt tubes for my son. I did feel better at least.

I slept with Ollie part of last night to give Mario a break. It's hard...you want to be near him and yet you hardly sleep because every sound or movement, every breath could mean something bad. I did sleep subs and about 4 am Mario wandered in needing to be near him so I went to be with Abby. A friend asked me isn't it hard to be intimate with a sick kid? Yes, but there's also a different intimacy, like an invisible rope that is tying us together. Like we're in the same kinder class and holding onto the rope together so we don't get lost and can stay safe. Maybe God is towing us.

 

Friday we just loved and hugged our children. They knew something was up but said nothing. Abby had a meltdown about homework and I told her it doesn't matter. Promised I'd message her lovely teachers who have put zero pressure on her this year and simply loved and supported her through the year. 

That afternoon we had a video conveyed with the entire team. It was particularly comforting to have our CHEO team there, too. They've been with us all this time. 

The new plan is a third generation ALK inhibitor caked Lorlatinib. CHEO had already looked into it before we left Ottaea and asked the pharmaceutical company for it to be released on compassionate grounds. You can't even buy it yet. It was approved for us and will be shipped. We decided to have it shipped to Ottawa as Ollie wants to come home and since we're looking at an unknown timeline now, we'd rather be home and at CHEO. We think being home will improve his depression and being at CHEO where he knows everything because he's physically seen it before blindness will bring back some confidence and get him moving again. 

There will also be 13 sessions of radiation. Sick Kids said he can do them at either hospital, so again it made more sense to us to do them in Ottawa. WHEN this works (not IF) we can come back to Toronto for the stem cell transplant. Abby's beautiful stem cells are stored safely here and I have to believe that God would not make her go through that if we won't get to use them. The team assured us that transplant is not off the table, we just need to beat back those cells in his beautiful brain. 

So we told the kids we need to try a better drug and some radiation. And told them we're heading home Sunday. Abby was sad because as much as she misses home, she like me, wants him to get her stem cells and be on.the road to recovery now. Ollie was mad that we're not leaving sooner!

He proudly donned his new Gabriel Pizza gear late in the day after we read all about our friends trying his new pizza. Some superheroes wear Gabriel Pizza attire. 

Toronto, it's been my least favourite visit ever, but we'll be back  so you can redeem yourself again after COVID-19. We are grateful to our friends in Toronto who have reached out and helped when they could despite this crazy time. We'll be home soon, Ottawa!