Racing Lives, Hearts and Go Karts

Our family always seemed to be racing somewhere before cancer. As much as we tried to keep things manageable in terms of work, school, lessons and daily activities, I never felt like we had enough time to just be. To be together, be happy, be mindful, be present. I think COVID-19 has made a lot of families realize that their insane day to day pace was not the greatest for their family. We started learning this about a year ago as the kids were going back to school, we were working (I was actually in full time French class for work) and we were trying to figure out what that darn bump on Ollie's neck was. The stress of it all was unbearable. 

You'd think I'd feel more stressed now after my son had cancer for the last year and almost died, but honestly I was more stressed then, knowing something was wrong and feeling like there was never enough time to figure it out quickly and work our life around it. Soon it became our life and everything else was unimportant. We worked the rest of our life around our family and around cancer. Furthermore, COVID-19 took away the need and really the desire to race anywhere. 

I've been thinking about this because we took Ollie Go Karting last weekend. We wanted to show Ollie that despite COVID-19 and him being immuno-compromised, we can still have (safe) fun. We called ahead to the Centennial Mini-Indy to verify how busy it was and ensure we could get a side by side racer so that our blind Mario Andretti could really feel that he was in the driver's seat and not just a little kid riding with their parent. The staff there were amazing and so kind. They accommodated Ollie's every need from extra care to sanitize things to more time to get in and out of the kart. We used a ton of surface and hand sanitizer and we were off to the races! 

I was behind the boys and was able to watch Ollie spinning that wheel like his life depended on it. When I got close I heard Mario yelling, "LEFT! LEFT! RIGHT! STRAIGHT!" at each bend in the road while Ollie either yelled that his dad was horrible at giving directions or just laughed out loud. At one point I slowed right down to take a picture of them and to wipe my eyes, because I was so happy to see him just being a normal kid that my eyes were leaking. 😭

 

The adrenaline of it was a great release for all of us and a reminder of how many bends and bumps in the road we've had, but gotten around. It also brought to mind the rat race that was our life before cancer. I recalled how the constant adrenaline of running around pre-cancer felt, how the adrenaline from fear during cancer felt and the incredible contrast of our very calm life now as we simply live and heal. I think the only race I want to be in from now on, though, is on the Go Kart track.

Ollie has been wanting to play a lot and frankly, it's not something I'm always great at unless we're at an amusement park, so I brought in some help with games like "Don't Step In It". This is a great equalizer for Ollie because you wear a blindfold (or Dad and I did since he's already blind) and try not to step in poop-shaped playdough. So we're all blind and it has poop in it. Every 8-year old boy's idea of fun! 

We also bought a Hot Wheels track where you launch cars and try to jump them into a scale at the end. Ollie is highly competitive and loves stuff like this. It also gets him down on the floor and moving his body up and down with his own strength, which he couldn't do for the 5 months before transplant!

We've finally got his sleep back on track! Not allowing him to have long naps during the day (1-2 hours max if he needs it, but often he doesn't anymore!) has helped him to be tired by or before his 9 pm meds. He's then sleeping through the night and waking about 7 or 8 am! This has made a world of difference for all of us. He still loves us to make an "Ollie sandwich" when he's falling sleep, though! 😄

He's doing amazingly well. So sometimes it feels wrong. How can things be going so well for us when the past year has so often gone wrong and atypically?! Unfortunately because you've come to expect it and are likely suffering from post traumatic stress disorder (PTSD), you're still on high alert for trouble, even though you are constantly trying to convince yourself to calm down and not overreact. 

For example, two weeks ago before Abby left for Ottawa, she pointed out what looked like a mosquito bite or a pimple on the back of his head. This is exactly how Ollie's bump on his neck that turned out to be Anaplastic Large Cell Lymphoma began. I reassured her that it was only a pimple and tried to forget about it, but my eyes and my hand have been constantly drawn to it, wondering, worrying. Last weekend it suddenly looked bigger and very red. I panicked and consulted my expert ALCL mama friends. They tried to reassure me that it was likely nothing, but both told me to contact the doctor to ease my mind. I talked to Mario about it and stressed him out, too. I sent a message to the bone marrow transplant doctors, asking for a scan this week to rule out it. The doctor promised we'd talk about it on Tuesday at Ollie's check in. I prayed so hard again. Please don't let the lymphoma be back!! By Tuesday it was reduced and almost gone. Just a pimple as his hair is growing back and sometimes clogging follicles.

 He's also had some eye irritation and sometimes pain in the past few days. It would be very easy to leap to the conclusion that he had lymphoma in his brain again given we've seen this twice already, but when we calmed Ollie down and tried flushing his eye out, we realized his eyelashes (that fell out after radiation and chemo pre-transplant) are growing back in and their stubbiness is poking his eyeball and irritating it. 

He's also had a loose tooth for weeks, but in hospital post-transplant they told him not to play with it as they were worried with his platelets low that if he pulled it out it wouldn't clot easily and he could have a hard time stopping the bleeding. So he left it, but it was becoming really annoying to him. On the weekend he decided to play with it and kept asking if he could pull it out. Even though his platelets and blood counts are way up and actually normal, we didn't know what would happen if he did pull it out. He kept pushing it with his tongue and finally popped it right out. A bit of gauze in his mouth for a few minutes showed only a very tiny amount of blood and it clotted in mere minutes. Normal. Not cause for alarm or stress at all.

We have to take every little thing seriously, without overreacting, but I am struggling to balance my emotional reaction with my rationality sometimes. So I'm going to see a psychologist virtually to help me deal with what I suspect is PTSD. There's no shame in it because I have proven how strong I am over the last year to myself and now I need to make sure I've worked through all of it so I can keep moving forward without a constant sense of fear, dread or escalated alarm. As I told Mario and Ollie when we went Go Karting and told Abby every time we went out somewhere in Toronto, we have to LIVE. We've fought so hard to save his life and now we all have to enjoy living life together.

Ollie wants to live. He's interested in doing and trying everything. He's finding new skills and strengths (he can balance almost anything on his head! 😄).

He asked for a chess set and I ran around downtown Toronto trying to find one on Labour Day. He played against Daddy, telling me where to move after we told him where Daddy's pieces were and where his were. It was amazing to see what he could picture and keep in his head. He really shocks me daily. How does a kid who's had 19 sessions of radiation and 6 rounds of chemo remember anything?! You hear of chemo brain and there are moments when he needs short term information repeated, but most of the time he is still sharp as a tack.

Mario also finally acknowledged that his COVID hair had to follow the former COVID beard. Ollie wanted to help. We forgot to bring the clipper guides, though, so Mario really got his money's worth on this one! 😄

Now they can both balance and stick things on their heads! 😜

Ollie is his usual silly self now. Wanting to retry everything. Constant pranks. Laughing at the idea of wearing my glasses because he can't see anyways...

We're connecting with his virtual teacher and his Vision Itinerant teacher and he's getting ready to be a real student again. It'll be a tricky transition after very little formal instruction over the past year. As I told him, he's wicked smart.and can do it. 

We listened to the book, "Who Was Helen Keller?" on Audible and he grudgingly admitted she was pretty impressive and did so much with even greater challenges (in some ways) than he's had to deal with. He agreed that if Helen Keller could deal with being deaf AND blind, he can certainly learn blind.

On Tuesday (Day +50 post transplant) at our appointment at Sick Kids, we were delighted to see Dr. Bader who had been one of our many dedicated oncologists on 4 North at CHEO. He has a tremendous bedside manner and has always been so patient and kind with Ollie. He's doing a rotation at Sick Kids and was excited to see Ollie doing so well. 

His bone marrow transplant doctor, Dr. Ali came in and reassured me that medically Ollie is well and doing better than expected. There is no sign of Graft Versus Host Disease, he's fully engrafted with three chimerism tests of 100% and his counts remain high and normal now. I joked that Abby had said the night before his first chimerism test that her stem cells were likely overachievers. He laughed and said they certainly were and they'd rarely seen a half match transplant go this well. And then he said he'd talked to our CHEO team and they all agreed that there's no medical reason for us to stay longer and we could go home THIS WEEK!!! I was elated and scared all at the same time. 

They originally told us 6-8 weeks in hospital for transplant (we were 5) and at least a month nearby after transplant (it's been 2.5 weeks). Can we really be ready to go home?! We're uncharacteristically ahead...atypical again, but finally in the best way! We've all been pretty emotional over the last 24 hours.

So we're heading back to Ottawa this weekend! I was out running an errand yesterday and all of a sudden became overwhelmed with emotion. I started to sob and had to pull the car over. It's done, I kept thinking (not really, but this part I was so afraid would never happen has been a success add we got through it all). It's real. He's better every day. We kicked the lymphoma in the teeth just like we promised. As usual I get done the hard thing and break down after everything is okay.

On a last happy note and with her permission, I want to share my pride in Catherine Nava. As many of you know, the Navas are dear family friends who have been amazing to us throughout this journey. We got to know them through Francesca who has been one of Abby's dearest friends since Kindergarten. Catherine babysat for us in the past. We have known her for the past 7 years and watched her become an impressive and caring young woman. She's thinking about a career in nursing. She'd be incredible. Every single time Ollie asked her to come and see him in  hospital or at our house, she dropped everything and came. Her maturity (she's 17) and compassion in helping him throughout his battle have touched me deeply. 

Just when I thought I couldn't love and admire her more, she goes and gets registered to be on the stem cell donor registry because of Ollie and Abby!!! My eyes are leaking again! ❤ Please raise amazing humans like Catherine (kudos to her devoted parents). Our future is secure if there are more like her out there.

My heart is full. I am so very grateful to  God, everyone at Sick Kids, Toronto, and everyone who supported us in this part of the journey. Toronto definitely redeemed itself for us this second successful attempt at a stem cell transplant. We're sorry that COVID and our need to keep Ollie safe have kept us from being able to see dear friends who live here and have checked in regularly to offer assistance and support. Your willingness to help was enough and so appreciated. We'll come back for a great visit when COVID is gone for good. 

Watch out, Ottawa! We're coming back! 

Success of the "Abby Treatment"

Engraftment is when the blood-forming cells received on stem cell transplant day start to grow and make healthy blood cells. It’s an important milestone in transplant recovery.

As of today, Ollie's had: 

- Multiple days of various blood counts increasing with a White Blood Cell count of 1.59 today;

- Three days of neutrophils being consistently higher than 0.5, so he is no longer neutropenic and has begun to be able to fight infections with his new immune system; and

- Platelets have started to rise on their own so they no longer need to give him transfusions.

So...he's officially engrafted and his "Abby treatment" (as my brilliant friend and author, Vanessa calls it) has worked (so far, as to be clear there are still many milestones to come)!!!

We've all been pretty moved the last few days to say the least. Abby was so excited and told me she knew she was supposed to save him from the start. There's something in my eye...and in my throat. 

Saturday they started the process to get him moved out of isolation. Ollie had a really emotional day, crying a lot at the littlest things. He's like his mama...gets through the hardest things and crises and once he's on the other side of it and can relax a little, he falls apart.  Poor Daddy was spending the afternoon and night with Ollie on Saturday, so much of the emotion was his to manage. 

They got off to a rough start when Mario voiced his concern that they wanted to move him too soon and Ollie got mad saying that Daddy didn't want him to get home earlier and didn't believe he was getting well. Mario's insistence that it was the contrary and he's just being cautious fell on deaf ears. Although Mario reminded me he wasn't the one who was good with emotions, they made it through a hard day together.

Yesterday they moved Ollie back into one of the 5 regular hospital rooms on the Bone Marrow and Stem Cell Transplant Unit. He was pretty psyched to be moving, but once we did he was overwhelmed again. We spent a lot of time snuggling and trying to calm him. Nothing like mama hugs when you're feeling big feelings you can't control.

One great distraction was his Nintendo Switch. Remember when Abby and her friends raised money to buy the Switch for him at the beginning of this journey?! It feels like a lifetime ago.

He hasn't done much with the Switch since he went blind. We did a bit of research in June and found that certain games could be played by visually impaired and blind people. So we dragged it to Toronto just in case, but it's the first time he asked to try it. Daddy got him going on Super Mario Kart Deluxe 8.

Mommy found a reference online to a game called 1-2 Switch that a woman and her blind husband had a blast with, so we downloaded it yesterday and goofed around with it all afternoon! It was just what the doctor ordered! 

He can play almost all of the 28 mini games that come with it, as they're all very active virtual reality type games (like Quick Draw where you pretend you're in a wild west gun fight or Boxing which is obvious or Baseball where one person pitches and the other swings at the ball). Needless to say he was thrilled and kept saying how awesome it was that blind people like him can still play Nintendo Switch! He didn't even mind that much when Mommy won sometimes!

So dear friends of Abby who worked so hard to raise money to buy him his precious Switch, know that he is more appreciative now of your generous gift than even at the beginning. It makes him feel like a normal, cancer-free kid (which is what he is now!).

I think Air Guitar is his ultimate favourite 1-2 Switch game so far.

Ollie's body is still struggling with nausea, vomiting and diarrhea, although less so than before. Doctors say it should all resolve itself in a few days once the antibiotics are out of his system. He's also experiencing some muscle spasms, but his water retention and swelling have gone down. It's the first time in months that his ankles and legs haven't been swollen!

Abby and Ollie have been sad about not seeing each other in over a month and given Abby will be going back to Ottawa before Ollie is likely out of the hospital, they're having a hard time with the idea that it might be a total of three months of separation before we are all together again. So I have asked the Pediatric Advanced Care Team for special permission for Abby to visit her brother in hospital before she leaves for school and they have indicated that this should be possible. Like I tell the kids if you don't ask, you don't get what you need.

On the phone with Ollie the other day when he was so sad and missing her, she had tears in her eyes as she made him promise that he'd be happy because her cells were working for him and everything they'd both been through was worth it. 

Honestly when I think about everything that's happened to our family in the last ten months, it feels surreal. We were a close knit family before, but cancer and our strengthening faith that God would help us through and save our Ollie have cemented our commitment to and gratitude for each other. 

We believe that God brought Mario and I together...two headstrong, independent, resilient people to build a family. Then He sent us both a selfless and determined daughter and a courageous and tenacious son...one to ultimately save the other...and in doing so He has blessed us beyond our wildest dreams. He gave us science and brilliant doctors and nurses to help us get our son well. He has provided us with an army of people to care for and love us through all of this.

In my most desperate moments over the past year I have begged and bargained with God that if He would save my son, I would tell our story and show everyone His goodness. That I would truly be an evangelist and dedicate my life to making the world a better place and sharing His love with others. 

For those of you who may not be believers, fear not! I won't try to convert you. I think our story is speaking for itself. The things that we have overcome are too big and difficult for us not to have had Divine intervention along the way. A prayer chain around the world for Ollie with loving people of so many different faiths participating...I believe it has made a miracle happen for our family.

Our journey is far from over, but we are on the path to physical wellness and emotional healing. Stick with us because the story is not yet done. There are no guarantees in all of this, but today our son is saved and we are celebrating.

Courageous Counting

While this is a photo of the Sick Kids Hospital Atrium at night from the 8th Floor Family Kitchen in the Bone Marrow Transplant Unit, during the day this space is buzzing and coming up again. Clinics are open, surgeries are happening again and the Atrium is quite busy on weekdays. Unfortunately even here people are oblivious to the need to social distance and many times I've had to ninja around people blocking the path to the doors, elevators, etc. 

My little lymphoma ninja has still not been feeling great these past few days. Still having challenges with nausea, vomiting and diarrhea, although they've played with his meds and reduced all of those symptoms. 

He's had some petechiae (round spots that appear on the skin due to bleeding and often indicate platelets are low), but has not needed more plasma. 

His eyes have been bugging him because they're dry from radiation and his eyelashes have fallen out this time from chemo. Many panics from having eyelashes on his eyeball!

We got him his own ukelele and he's been happily picking away at it.

The Sick Kids clown, A. Leboo has been coming by each week to Beyblade.  I saw him coming into the hospital the other day in his regular clothes and almost didn't recognize him! 

Ollie's face and lips were swollen for a few days from water retention. That's easily fixed with Lasix that they give him in his line to have him pee out the extra fluid. Fluid intake and outtake are closely measured and his weight is taken daily to ensure he doesn't have any fluid imbalance.

He's wanted to snuggle more because he feels so rotten. We keep telling him you have to feel worse to feel better and he's almost there. It's Day +19 today and he's felt rotten most of those days. He's also been more emotional the last few days, having crying episodes over things that normally wouldn't phase him. We're in.the home stretch to feeling better and it's hard to hold it together sometimes, so you just have to let it all out to move on.

He's also had intermittent low grade fevers the last few days. It's freaky because this is also a normal and good sign of grafting, but before now anytime a cancer patient got fever it was considered bad and a sign of infection. They still take blood cultures each time he's feverish just to be sure it's not bacteria or infection, but he's on anti-virals, anti-fungis and immuno-suppressants to keep him from getting sick and rejecting the new stem cells. No sign of Graft Versus Host Disease, either.

Our 13th wedding anniversary was Wednesday. We saw each other for about 25 minutes during our tagging in/out transition in hospital. I got back to the condo and there were some flowers and chocolate as well as cards from Mario and the kids. They can't be brought to the hospital given the risk of fungi so I enjoyed them for a few hours at the condo. I had sent Mario pies. Romance, cancer style. LOL

Music therapy started well this week with Ollie playing guitar, but when he tried to sing, his voice was too hoarse from the mucusitus and he got upset and gave up. 

Toni and I finished the session with his favorite songs, but he was not consoled.

Yesterday Ollie said to me that he wanted to change his Make A Wish (he has chosen to wait until COVID is over to go on a trip to Atlantis Bahamas to swim with the dolphins) to instead give the money they would have spent in the trip to CHEO so that they could get their own Bone Marrow and Stem Cell Transplant Unit so that kids like him wouldn't have to wait for transplants and wouldn't have to move so far from home to get the transplant. He knows we have to stay nearby for at least a month after he does get out of Sick Kids and wishes we could be home instead. So his solution is to make it better and fairer for other kids. 💗

I had to explain that is a beautiful idea and I will absolutely talk to CHEO and everyone necessary to make this happen, but it might take a little while to raise the millions of dollars needed to do this. I LOVE his gigantic heart and belief that everything is possible. I tweeted Alex Munter at CHEO and Make A Wish about this yesterday. Alex was lovely and said to let him know when we're back in Ottawa so we can get together and talk about it. We're going to find a way to get Ollie this wish, even if it takes me years to make it happen. 

I'm also working on a plan with some other moms internationally to raise greater awareness of pediatric Anaplastic Large Cell Lymphoma (ALCL), but I'll share more on that as things solidify. 

Now for some really positive news...his blood counts are going up! On Monday he was only 0.03 for his white blood cell count. This is normally expressed multiplied by 1,000, so his count would really be 300. Your average WBC would be between 4,000 and 11,000 per micrometer of blood. Every day since then it has doubled or better despite the fact that we were tools they may fluctuate up and down at first. Tuesday he was 0.05, Wednesday he was 0.08, Thursday he was 0.26, Friday he was 0.54 and today he is 1.09! 

This means he's starting to have neutrophils and infection fighting ability and MOST IMPORTANTLY it means his new immune system from his amazing sister is starting to work!!! Praise God! 

He's not vomited at all since yesterday afternoon now and this is another sign that the WBC are healing his body. 

It's early days and makes Mario nervous to get too excited about it, but the doctors are really pleased and are talking about moving him out of his isolation room into a regular one in the next few days. I am so relieved and filled with love for everyone and everything right now that I feel like I must be emitting beams of light from my body!

He's sleepy today, but has more energy when he is awake. He's happy, but emotional. I can totally relate, but poor Mario looks at us both like we're complete aliens. LOL

He is really missing Abby. He was emotional when I left the hospital this morning, so I stayed longer to hold him and let him cry. He was upset that Daddy was nervous about him moving to a new room too soon and got mad at his father because he felt Daddy didn't want him to come home as soon as possible. He cried that he really misses his sister and needs to see her sooner and doesn't want her to go back to Ottawa without us. Then he felt bad that he was keeping me there and insisted I go to be with her so she wouldn't be sad, too!

She misses him, too, but is focused on getting ready to go back to school. My dearest friend came to Toronto this week and took her back to school shopping, being as careful as possible to keep her safe. Abby had a blast and got to feel normal for a bit. I don't know what I'd do without selfless people like Sonya and so many of you who have stepped up to help me anytime and with anything we've needed.

It's been a really hard decision for us to send her to school and it's still not 100% made, but it looks like we're going to send her back to Ottawa to stay with dear friends for at least a month until we can come home. If we have to stay in Toronto longer, we'll reevaluate and possibly have fault go up to Ottawa to stay with her, or have Mario go home to be with her and family come to Toronto to help me. I am still hopeful that the path continues to be clear and simple for him so that we can just go home sooner and all be together again.

They've generously offered to have her and we know they'll love her and care for her like their own, but man is it ever hard to let her go. She's staying middle school and I'm consoled at least by the idea that the school is only grades 7 and 8 and not with other elementary nor with high school students who can more easily transmit viruses including COVID.

She desperately needs to get back to normal and routine for her own mental health after three months of COVID and 10 months of cancer turning her life upside down. It's really an impossible choice, but her social worker and psychologists feel despite the risk it would be best for her. So we will embark upon yet another stressful experiment in our life, hopeful that her fear and common sense will keep her distant and safe as much as is possible.

We'll have to figure out how we manage the risk to Ollie when we get home as its not just COVID we have to worry about, but all viruses, bacteria and diseases since all of his immunities and antibodies have been wiped out with the transplant and he'll need to gradually get all of his vaccinations again when it's safe to get them.

So we're all emotional, but good right now. Your prayers are working, so please keep them coming as we're not home, yet but can't wait to be!

Literal Isolation

He's still at CHEO being a superhero infection fighter. No fever since this morning, although headache and nausea off and on.

We're now literally not just feeling isolated, but are actually in isolation, so no visitors or leaving the room for him until he's well. Naturally this time he brought Beyblades and hoped to make a new friend here to play with. 

Mario took the day off and let Abby sleep in (who indignantly protested when she woke up that she could NOT miss school...She's totally my daughter), then took her to school late and came to be with us for the rest of the day. Ollie slept a lot today.

Llama Llama Blue Pajamas slept today, too.

Dear friends had Abby after school, fed her dinner and took her out to Kanata for a special youth group activity and later brought her back. 

Ollie took the painful and expensive, yet magical G-CSF injection again tonight to try to boost his neutrophils, so here's hoping it works like last time. 

We're tired, but doing okay. We're in limbo about when we'll go home and even if there'll be chemo this week or if it will be delayed, as it all depends on his blood counts between now and Monday. 

Off to bed for me now. Your prayers and encouragement have been helpful today. Sweet dreams to all.