Motivation and Rewards

What motivates you to do the hardest things? Is it the satisfaction of accomplishing a goal? Praise and admiration from others when you succeed? Attaining some material thing that you desire?

Motivation is different for each and every one of us depending on what we need to do, overcome or accomplish. Sadly there's no recipe for motivating someone to get through cancer or adapting to blindness, especially a kid. That's something we've grappled with from the start of Ollie's Anaplastic Large Cell Lymphoma.  HOW do we get this determined kid to do all of the hard things and keep going to tackle the next hard thing? And there have been way more hard things than I ever imagined possible.  

Through trial and error we have learned a few things along the way about how to motivate our boy to go through the hell he has had to in order to survive. Mario, Abby and I didn't need more motivation than the fear of losing our Ollie and the knowledge that if we didn't do all of the hard things it took to help him beat cancer he wouldn't survive. He was our constant motivation and the biggest reward at the end.

Rewards have always motivated Ollie. He likes to compete and win. He likes to collect things and become an expert in the things he collects. His favourite foods can stimulate him to get things done. And so, while I hate the idea of spending money on things we don't really need, we honestly needed to buy more Beyblades than I ever imagined possible. He had a collection of about 40 pre-cancer and now has a collection of 240 to give you a sense of how many hard things we have had to motivate him to do this year. We've also eaten more Gabriel Pizza and Merry Dairy ice cream than our bodies likely appreciated (although it was all yummy!). 

Ollie is working with the Vision Loss Rehab team to master his cane. Jennifer is an amazing and patient teacher. Ollie can't wait to walk and see how far he can get. We even walked at the hospital this week! Earlier this week with the enticement of a pint of Merry Dairy ice cream at the end, he walked 6 blocks there and 6 blocks back (the last two holding my arm as fatigue had set in at 10 blocks since its the farthest he's walked since January when he had lymphoma in his brain and went blind). Twelve blocks! 

We also discovered that although Ollie hasn't mentioned it since before transplant, he can see shadows and sometimes lights glowing again. When he was working with Jennifer as she kept trying to put obstacles in his path for his cane to find, he told us he could see which side she was putting it on because he could see her shadow moving! The ophthalmologist at CHEO and Sick Kids told us that while his optic nerves are severely damaged and irreparable, as the inflammation went down and he stopped taking high dose steroids, he may be able to see shadows and forms on good days. Unfortunately the optic nerve is one of the only nerves on your body that cannot yet be repaired, but this does help him to protect himself a bit better. 

We are grateful to Marlene and her team at the Merry Dairy in our neighborhood for the enticing treats that are motivating him to get moving. In fact we've been there three times this week...

It was cold today, but we were eating ice cream and grateful for it because it makes our warrior want to get moving and stronger. We'll start our diets when the snow flies I guess! 😄

We got a new balance ball chair last week and he's loving it. Thanks to Stacey who uses one in our office, which gave me the idea for Ollie to use it for online schooling! His balance and strength in the past week has improved exponentially and his physiotherapist is astounded at his improvement. He even insisted on pumping up the ball when we were assembling it!

Last weekend dear friends Andrew and MJ brought by a bunch of gently loved clothes that their kids were done with. For Ollie who hasn't been in a store of any kind in a year, it was like we brought the store to him! 

He loves skateboarding, so he was thrilled to find so many cool clothes from Zoo York and gently used Vans shoes since he'd outgrown his two skateboarding pairs. 

He was pretty thrilled about the Vans high tops and honestly these shoes have motivated him to walk a bit farther each day! 

He also had some fun trying on some silly onesies! Mario was like a kid dressing up a doll! LOL

All of this excitement tuckers a new stem cell recipient out...Chewbacca is always happy to keep our little napper company! 😄

When he wakes he's hungry and thirsty...he's now determined to get much of his own stuff when hungry. I live in paranoia of pickle jars tumbling out and smashing his toes, but he's got to learn again sometime.

Lately he always wants to prove that he can still do normal stuff. When his sister was (as usual) trying to get out of chores, Ollie begged to be able to do them. So I let him Swiffer mop the floors on one level, all the while feeling I was extorting the poor little blind, former cancer kid. Meanwhile he was fleecing ME as he convinced me to pay him extra for every one of Abby's chores he does. 😂

But he was so proud when it was done and with a bit of instruction did a pretty good job. Also we know that our job as parents now that he's blind is the same as it was before: to prepare him to live a good, kind, independent life, able to take care of himself and a family of his own one day.

Things are going really well with his vision itinerant teacher now that she's making many tasks a game or competition for him. He was speed skip counting against his earlier times today and then using blocks to 3D graph and compare his progress. Then she read him a chapter from the latest book of his favourite series (The Bad Guys) and asked him to use Lego to build what he thought the mad science lab in it would look like. We all helped a bit (which his teacher said was okay) and he so enjoyed working with us and using his hands to create a 3D picture since he can no longer draw easily since he can't see what he's putting on the page.

As for me, I've had two sessions with my new psychotherapist and it feels good when she tells me how normal for cancer families and especially caregivers all of my seemingly bizarre emotions are right now. 

I am spending a lot of time on mundane admin stuff like getting insurance companies to send me pre-authorization forms for new meds, filing a backlog of insurance claims, getting income tax docs ready to finally file from 2019 (CRA was very understanding given how the past months have gone for us), and generally being Ollie's admin assistant and scribe. 

I did stop and finally take my selfie with the literal and proverbial sign that kept me going for months after his last relapse as we trekked back and forth from the CHEO during radiation and the many checkups and tests as we waited for remission as the green light (or really the teal light as evidenced in the sign above) to go back to Toronto for stem cell transplant. 

I am eternally grateful to all donors and potential donors of all blood products and stem cells. I am donating blood this weekend for Thanksgiving 1. In memory of my grandfather who passed 30 years ago this weekend from cancer;

2. In honour of Ollie; 

3. As thanks for all of the generous souls who have donated blood and plasma and saved him so many times this year;

4. To pay it forward and sad someone else's kid the way that others helped to save mine. 

If like us, you're not seeing family this weekend to keep everyone safe with COVID cases on the rise, please consider making an appointment to give blood, too. Think of Ollie and so many brave souls like him who need your donation to stay with families who love them. Give thanks while doing so for your many blessings, especially your health and loved ones. I have never been so grateful for mine.

I leave you with Ollie's list of things he's thankful for this year (Mommy was his scribe so excuse the poor printing). I find it fascinating that beating cancer was last on his list as it's one of the first on mine this year. Happy Thanksgiving to all and stay safe! Love from all of us!