Math, Milestones, Planning and Playspaces

The past month has sped by! So much has happened since I last wrote!

Ollie is doing really well physically, mentally and with his online learning. He's online with his vision itinerant teacher longer now (about two hours each morning) and doing some asynchronous learning with me in the afternoons from his class' online assignments.  He's doing amazingly well in Math, which I worried would be really hard without vision, but tactiles are incredible 

tools and his vision itinerant teacher has a wealth of experience in teaching curious little boys and keeping them engaged (even online!). He's amazing now atvdoing long addition, subtraction and multiplication with his tactiles and can even do it in his head now! We were playing the Bakugan game with him on Sunday and he was easily counting up the hundreds of points in his head! Neither chemo nor radiation has affected this boy's big brain!

We're joining his online class when there are activities he can participate in easily (he loves Mondays where they do Community Circle and show and tell). He's reading more Braille and in full sentences now (we're on his fifth Braille book and each is about 30 pages!). 

As part of his vision itinerant program there is a Daily Life Skills teacher and a couple of weeks ago a handful of grade 3 boys met online to talk about making their own breakfast and how they did it. Ollie made himself toast with butter, a boiled egg (we use an electric egg steamer with him so he doesn't have to use the stove yet) and a chocolate milk. He was pretty pleased with himself and we were very proud.

Speaking of eating...since he passed his 6 months post transplant milestone and is physically doing great, he was cleared to stop the low bacteria diet that he's been on since stem cell transplant. This meant he could finally eat lunchmeat and have the Subway sub that he's been dreaming about for 7 months!

It also means a return to fresh fruits that have no peel, so berries are back in style at our house! 

On the medical side, he's been doing so well. He used his incredible experience and bravery to coach daddy through his own blood tests recently when Mario's life insurance was up for renewal and he had to submit to tests to get a better rate. Mario hates having blood taken and it's seriously like getting blood from a stone. Ollie made him drink plenty of water and was delighted that finally daddy was the one who was NPO (NPO means “nothing by mouth,” from the Latin nil per os) that day. Ollie helped him breath deep, held his hand and talked him through it. My how far we've come!

Ollie didn't have to go back to CHEO for his own bloodwork and check up for an entire month (which was something to celebrate, but also anxiety causing for mommy who remembered vividly that he had relapsed in a mere three weeks originally). We did have to go for a quick pulmonary test on February 3rd and while we knew this was an easy test, I had been feeling weepy and uneasy for days about having to go back to CHEO. It's comforting to be there once we're there, but each time the idea of going back is still stressful.

So on February 3rd we arrived in Clinic C9 and a man came to meet us and called Ollie and I by name. I didn't at first think this was strange, but a few minutes later wondered how he knew my name as I am listed by my first name in CHEO's records (Dawn is my middle name). Plus most staff at hospitals call you "mom". 

When he introduced himself as Strider and explained that we'd emailed in the past, it all became clear. Strider is a respiratory therapist at CHEO, a friend and colleague of dear friend Jamie at CHEO. She connected us when we were in Toronto the first time when Ollie was relapsing. I had asked for survivor stories and she (and so many others) delivered as Strider is a two-time childhood cancer survivor. He sent us the most beautiful survivor story and gave us such hope. And on this day when I was feeling weepy and honestly anxious about the future and the possibility of relapse or a secondary cancer, this was a Godwink to remind me that everything can be okay. Strider has lived his entire adult life cancer-free and is working at CHEO to give back to kids who are just like he was. It was such a blessing to meet him in person and know that one day Ollie can also be a healthy and kind man just like he is.

We've been helping Canadian Blood Services and our friend Steve Gleddie at the Bruce Denniston Bone Marrow Society  to promote the #Beahero campaign to encourage folks to get swabbed for the stem cell registry. 

As a result of COVID, they can't hold swabbing clinics like the one that they were going to run in Ollie's honour last March before COVID hit and we had to cancel. So there are fewer people joining the registry at a time when there are more than 800 people in Canada waiting for a match and thousands more around the world. Most importantly we need to increase the number of potential Canadian donors (especially from ethnically diverse backgrounds) so that families that don't have at least a partial match like ours did still have hope that their loved one can be saved like our Ollie. 

We now know of two beautiful souls who got on the registry because of Abby and Ollie (thanks to Cate and Bev) last year. We also directly know 5 other families whose children needed transplants over the past year and 4 of those 5 didn't have family matches, but thank God found matches on the registry. 

If you know a healthy someone between 17 and 35, please encourage them to order a free swabbing kit from Canadian Blood Services. Be a hero to someone like our Abby is. Best. Gift. Ever.

We also got some pretty exciting news last week. Ollie is getting his Buddy Dog from the Canadian National Institute for the Blind (CNIB) on March 5th! Details will follow, but we know it's a lab and will be 2 years old on February 28th. 

We got Ollie the perfect dog toy...a NERF Dog Ball Blaster! He can't wait to introduce you to his new best friend!

Finally, today we had another medical milestone in that Ollie got his first two re-vaccinations. Over the next months he'll get them all again (as and when it is safe for him to do so). Please people, vaccinate your kids and tell your kids to vaccinate your grandkids...we're now doing it a second time because his stem cell transplant wiped out his immunities and I now believe even more in the power of medicine to keep us well and to heal us.  He was a complete champ as two lovely nurses did them simultaneously so it would only hurt once. And this after bloodwork! 

Now on to Abby! She's decided to cook us dinner one night a week. The first week was a pretty yummy taco bake. 

She's still not thrilled about online school, but is hanging in there and knows it's only a few more months.

We've also been working on "The Clubhouse" for the kids. This is a secondary building behind our home that was rebuilt in 2008 after snow caved the roof in. We've mainly used for storage and Mario's workshop, but there is a large insulated and finished space downstairs for Ollie's epic playroom (a Make A Wish of Eastern Ontario project to be revealed on March 3rd) and we decided to have the upstairs space insulated and drywalled to give Abby her own epic hang out space in recognition of the amazing thing that she did to save her brother last year. It also gives us space for the kids as they are getting older, will want friends over more when COVID is finally gone and allows us to move toys and crafts back there to recover some space in the house. 

Here was Abby's attic space before...

Used for storage of seasonal things mostly...

Thanks to some help from a contractor, our own little COVID project

took shape...

And large enough to hive off some storage space for the many seasonal things we still needed to keep after the major purge.

Out of found space, Abby's Epic Clubhouse was born...

Economically done with part of what was left from Ollie's Critical Illness Insurance money (the rest was invested for his future and in Lego and Beyblade cabinets for his space), but beautiful and she's pleased...

Now completed and even daddy likes to hang out there (partly because she has his old/never parted with papasan chair from his bachelor days)...

Everything a soon to be teenager could want...

So our hands are raw from assembling Ikea furniture, but our kiddos are healthy and happy with more excitement to come in the coming weeks. Mario has worked so hard on finishing both kids' spaces and we can't wait to see Ollie's finished with everything from Make A Wish.

As for me, I'm doing okay. I've had some really good days and a sprinkling of anxious or emotional days in between. Having the epic clubhouse project to occupy my "free time" has helped me not to overanalyze or play the "What if" game too much. I am just trying to find a balance between just dealing with today and not being afraid to plan for the future again. The clubhouse has been a good short-term project to satisfy my craving for returning to my natural planning self without being too far into the future. I'm not sure if I'll ever truly be able to go back to being my long term planning self without fear of the bumps in the road that may mess up those plans. We certainly didn't expect the last few and they've all taken way longer than expected to get over. Not sure we'll ever truly be over them. For now, I'm focusing on the short-term future and grateful that we have one with Ollie to look forward to.

Half Re-birthday

Happy 6 months post stem cell transplant to Ollie!!!

On this day +184 days or 6 months ago from July 20, 2020, Ollie received his sister's lifesaving half match stem cells after an unbelievable battle with Anaplastic Large Cell Lymphoma ALK Positive and two relapses in his central nervous system. 

We can hardly believe that it's already been 6 months. This is another important milestone in the stem cell transplant journey in that if all is well at this point, the re-vaccination process can begin for him. Normally if COVID-19 weren't with us, this would be the point at which Ollie could start to have some interaction with friends and family again. Sadly, that will have to wait until after COVID.

As for Ollie, he is mostly excited to be able to eat deli meats (no Subway for 6 months!), berries (not allowed on low bacteria diet) and to be able medically to get his Buddy Dog from CNIB whenever they have one ready for him.

On Monday we were at CHEO for 5 hours for multiple tests and checkups. 

He had an electrocardiogram and an echocardiogram, a bone density test, and an x-ray of his pelvis and hips. 

In addition to his regular bloodwork, he also had another chimerism test to verify that his sister's stem cells are still 100% functioning in his body. They have been each of the three times he's had this test and his oncologist/post transplant doc confirms that his sister's cells are the overachievers that Abby said they would be. 

He asked Daddy to watch him have his blood tests to show him how brave he is.

He also had an additional blood test to see what (if any but apparently there is a slim chance of having any) antibodies he may still have or have gotten from his sister's cells. This will be used to determine the re-vaccination schedule for him to start as early as next month! Like a newborn baby they'll start with the non-live vaccines and by end of his first year post transplant will finish with the live ones when his new immune system is even stronger. 

Only after he is vaccinated and COVID is gone will he be able to physically go back to school (and I to work).

 He capped off his CHEO visit with a chat with the social worker to follow up on his pre-Christmas request to meet her. I sat outside the room (door open) and listened to music and talked to the doctor while he had some "privacy" to talk about feelings. I am glad that he's seen Abby and I talking to mental health professionals and sees value in it for himself. If only all children were taught about mental health. Only in this way will he be freed in adulthood from the emotional chains that go along with repressed memories and feelings.

Physically he's been well although a bit tired over the past week and Mario did find a little bump at the back of his neck last week. He's having an ultrasound next Monday to ensure it's nothing but as the parent of a cancer survivor, the fear of recurrence never leaves you. I am actually participating in a research study about pediatric fear of recurrence in survivors with the University of Calgary right now and will share more on this as it develops.

The irony is that as the parent you have to assuage their fears and reassure them that it's likely nothing to be concerned about at the same time as your own alarm bells are ringing and you're trying to keep your own anxiety under control.

But we know that there will always be at least little bumps in the road and we can't choose a smoother path, so we just have to fight the instinct to immediately put our armour on and ready for battle. This is hard when history tells us we should never let our guard down.

Last year on this day Mario and I were so stressed because Ollie was inpatient very ill with what we suspected but did not yet know was Anaplastic Large Cell Lymphoma in his brain and spine. 

We also suspected, but didn't know yet that he was having seizures (due to a sodium issue called SIADH) and a CT on this day was inconclusive. Five days later he'd be blind and transferred to the Pediatric Intensive Care Unit (PICU). 

It seems bizarre to me that the same week that marks a year since he relapsed and went blind is the same week that we celebrate 6 months post transplant. Perhaps it's God's way of reminding us to focus on the good and to remember to be grateful despite everything bad that happened. 

A dear friend gave me this stone that she brought back from Florida for me last February after the worst weeks of our lives. She said she had been thinking of us constantly and saw it and knew she needed to give it to me. I have kept this stone on the shelf in the bathroom since then. Some days when going back to the hospital after spending a night with Abby I'd put it in my pocket and carry it as around for a few days until I felt strong again. It would also make me laugh because pre-cancer Ollie was always coming home from daycare with rocks in his pocket, so it was connected to him in more ways than one. Today as I brush my teeth, wash my face, wash my hands, or even clean the bathroom it reminds me that despite the daily fear we live with that Ollie's lymphoma will come back, we need to have hope that it won't and faith that God will carry us all through whatever might lie ahead for Ollie and the rest of us. 

As I tell Ollie when he's worried, we pray daily that it is done and will never come back, but if it does, we know we beat it before and we'll fight as many times as we need to in order to keep him and kick lymphoma out.

For today we'll just put our party hats on and celebrate another milestone reached by our incredible son with the help of our unbelievable daughter's stem cells. 

Hope lockdown is not too hard where you are and trust me, we can all do hard things when we have to.