Clearing Scans, Passing Tests and Accessibility Stories

[Photo description: Mario, Abby, Ollie and Dawn pose in their backyard wearing huge smiles and holding Ollie's hands as they surround him with love. Photos were done as part of the annual #PhotosForPhoebe event in support of the Phoebe Rose Rocks Foundation that supported Ollie and family during his stem cell transplant. Photo credit to Anne-Marie Bouchard Photography who donated her time and talent in return for donations to the Phoebe Rose Rocks Foundation]

If you've been hesitant to ask us about the results of scans and waiting for us to share, so sorry to keep you hanging! The MRI got delayed by a week due to someone else's emergency. Ollie was upset by the delay at first, but I reminded him that we got bumped because his scans are just routine and that there have been times when he was the urgent case and we likely bumped other people to accommodate him at those times. 

We did have the CT as planned and the doctor was kind enough to call me after I sent an apologetic email on the third day when we hadn't heard, that I was having bad dreams that she was trying to reach me and couldn't and I couldn't stand not knowing anymore. She called and asked me how I was and I said, "I'm okay." and she teased me saying I obviously was not because she just got my email and knew I was stressing out! 😄 She confirmed that the CT was clear and unchanged from a year ago! That helped to ease my anxiety quite a bit, although I knew that the MRI would scan his brain where most of his persistent relapses have been.

[Photo description: Ollie wears a mask and holds a sprayer from a garden hose on Hope 

who looks unimpressed as he gives her a bath at our local Pet Valu DIY pet wash]

He had his MRI three weeks ago and it was anxiety ridden for both of us. I sat watching for an hour and thirty minutes with no clock in the room, no phone and nothing to do but think and fixate. So I prayed and took a lot of deep breaths. Pretty much for the entire time. I prayed for clear scans and patience and healing for us all. I prayed for our army of kind people who came through for us in every way. I prayed for all families admitted to CHEO at that time including our little friend Isaac who was just starting his last admission upstairs on 4 North. I prayed for every kid we have come to know or have known for too short a time before they were taken too young during our own two year journey. I prayed for those brave kids and their families who unfairly battled the unthinkable and couldn't beat it and I also begged God for those that have made it so far to be well. For their families to know joy and normalcy again. And for my son never to have to ever again face death during my lifetime and well beyond.

[Photo description: Ollie sits at the kitchen table making a homemade 

pepperoni and green olive pizza.]

Ollie was great until they had to put his needle in to inject the contrast. He always hates that part. The technicians were as always terrific, but they did end up having to do extra scans of his back, so that took longer and by the end he was hollering at them to get him out before he lost it. By then he was tired, hungry, frustrated and his ears were hurting from the headphones. I honestly don't know how we did these unsedated before when he was on steroids all the time and was angry and impatient! He is a total wonder!  

[Photo description: Ollie sits building Lego mini figures at CHEO while waiting for his CT scan and drinking the contrast. He has to drink 1 cup every half hour and 4 cups in total, so it is a two hour ordeal.]

We found out two weeks ago during his checkup with Dr. Abbott that the MRI shows there is no evidence of disease, so remains cancer free! Thanks be to God! 

The MRI did still show that some inflammation remains in his optic nerves, and it's been 21 months since he went blind! Thankfully they did get a clearer picture of where the damage is including the detached retina on the left that we already knew about and the tear on the right eye that the retina specialist at The Ottawa Hospital suspected. Ollie also had eye ultrasounds and a check in with this specialist two weeks ago, so this should help him to decide what surgery Ollie will need on his eyes in the coming months to clear out that blood from the detachment and the tear, to fix these issues and stop the growth of the new blood vessels from strangling his eyes. We hope to know more in a few weeks. 

The MRI also shows further deterioration in his lower spine and right hip, but again we are being followed by the endocrinologist and bone specialist who have done other scans this summer and are monitoring this. They'll be sent his MRI and consulted to see if we stay the course or may need to consider treatment (injections) to help increase his bone density. 

[Photo description: Ollie wears a mask, a hospital gown and hospital pants, sitting in CHEO imaging with his white cane while waiting for his latest MRI]

We also did a special blood test called the Minimal Residual Disease (MRD) test. MRD refers to cancer cells remaining after treatment that can't be detected by other scans and tests. These cells have the potential to come back and cause relapse.. I had heard of this through other ALCL parents in the UK and Europe and asked our oncologist to see if we could it, too. As with most medical tests it is not an absolute answer. When looked at in concert with imaging scans like an MRI and CT, it can be a marker for whether additional treatment is needed at this time or not. 

Dr. Abbott as always listened to my request to do this even though it isn't typically done in North America very often or in very many places. She took the information that I gave her about other experts in the U.S., Germany and England who do this, contacted them and arranged for Ollie's sample to be sent to and analyzed in Germany. They agreed to analyze his sample and provide results for free and he became part of an ALCL study there as well. We thought we'd have to pay out of pocket to have the sample couriered to Germany, but Dr. Abbott asked OHIP and they agreed to pay for the sample to be sent! It just reinforces what I've learned over the past two years - if you don't ask, you don't get. 

 

I got a brief call from Dr. Abbott during one of her exceptionally busy days this week and she confirmed that his test result was negative. Meaning no evidence of any remaining cancer cells in his body! This is great news, but as always we remain cautiously optimistic as it is no guarantee that if we did the test again in future it wouldn't be positive. It also causes us to have to think about what we do next as Ollie remains on an ALK inhibitor drug and at some point we need to decide if we take him off and see if the transplant and the drug have been enough to kick cancer out for good, if we stay the course and remain on the drug for the full planned 2 years or potentially reduce his current dosage to see if we can reduce his weight gain, water retention and ease some of the anxiety that the drug sometimes causes for him. 

We have friends in the UK who recently took their child off of the drug and there was a relapse within a few months. That said their chimerism never reached 100% after transplant with an unrelated donor. We also know another family with a child in the U.S.A. whose child went off of the drug 6 months ago after over a year post transplant with an unrelated donor and 100% chimerism and they are doing great. It is so difficult to be making rational decisions without adequate data and case studies to do so. Few understand what it is really like to be making life or death decisions for their child. You'd think we would be getting pretty good at it, but it never gets easier. We'll be having another discussion with Dr. Abbott soon to determine the way forward. As always, we will share more info when we can. 

[Photo description: Ollie stands in front of the skate park at The Yard wearing a mask, a helmet and safety pads while holding his white cane and his skateboard]

In other (less stressful) news, I posted on social media recently about Ollie starting skateboarding lessons at The Yard and how the owner was keen to learn from Calgary's ALT Route accessible skate park project to help find safe ways for Ollie to skateboard, too. Anthony and Jordan at the Yard are good humans who just wanted to help give a blind cancer/stem cell transplant survivor kid a chance to do again what he once loved. 

I'm going to write a separate blog piece on how they're doing this with him soon, so stay tuned! For now you can imagine how happy this makes Ollie and how incredible it is for all involved to see him get back to something he is so passionate and fearless about. 

You should also check out this awesome documentary about ALT Route! 

[Photo description: Ollie and Hope wearing their CNIB gear visit the CNIB Canine Centre and greet an employee with the Canadian Animal Blood Bank.]

Recently Hope became another hero in our family (or perhaps just a bigger one since we already thought she was a hero for all she does to help Ollie) when she donated blood at a clinic organized by the CNIB Guide Dogs team at the CNIB Canine Centre in Carleton Place to help out the Canadian Animal Blood Bank. You never think about dogs needing blood in emergency situations, but they do, too and due to COVID their bank has been nearly empty until donor clinics have once again been allowed. COVID protocols were followed so we didn't get to be with her during her donation, but Miriam and Lucie at the Guide Dogs program were there to help her through it and she was so excited to see them again! She did great, donated an entire pint and is a universal donor! We are so proud of her! She also had a fun puppy playdate after as our fellow Buddy Dog duo Connor and June were also there at the same time. 

[Photo description: Ollie holds his dog whistle while Buddy Dog Hope sits at his feet and Buddy Dog June stands beside her waiting for a command.]

She and Ollie have also been invited to be part of the CNIB's float for the Carleton Place Christmas Parade on November 27th! Ollie is pretty excited about this, especially since it looks like we'll get to meet Ray (Hope's brother) and his handler at the parade! 

Hope and Ollie now have their own Instagram account (@cnib_ollies_hope) where we post shorter updates more frequently if you want to follow along there as well!

[Photo description: Abby sits on the sofa while a boom microphone hovers in front and above her during her interview for the new AMI-TV series We Are One]

We also agreed last spring to share Ollie's story of becoming blind with the Accessible Media Inc. (AMI-TV) team to be profiled in an episode of their new series, We Are One. Originally we were going to shoot it this summer, but COVID as usual delayed things and so we shot it just a couple of weeks ago. Interviews were done with us at home observing COVID protocols as we knew all crew members were double vaccinated. I think that the interviews are among the best and most honest we have ever given. 

 

[Photo description: Ollie and his skateboarding instructor Jordan walk up a ramp in the skate park towards a sign on the wall that reads, "The Yard" while the videographer and sound technician capture the moment.]

Chris Vallee is the host of the show and we "met" him online last spring because his story of overcoming an eating disorder as a teen thanks to a CHEO program was also profiled as part of the 2021 CHEO Telethon which Ollie was also featured in. He put us at ease right away and I felt grateful to have another CHEO success story telling Ollie's. Abby in particular responded so well to Chris. I watched her interview and was moved to tears so many times by the raw honesty that she displayed. As a teen now it's harder to be publicly vulnerable and I had given her permission and warned them that she may opt not to answer some of their questions if she preferred not to. As usual my children's strength left me in awe as she answered every question thoughtfully and purely as her best self. When Abby was done and she'd gone back up to her room to return to her teen life chatting online with friends, both the producer and the sound technician commented on how moving her interview was (and they see a lot of interviews). The crew was awesome and the sound technician later told me how much he loves working for AMI because of the compelling stories they tell and the amazing people he gets to meet like us! 

[Photo description: Ollie is second from the right with the ball while playing road hockey with friends Magnum, Will, James, Elias and Lewis in the school yard. The boom microphone can be seen overhead in the foreground.]

As part of the b-roll (fancy production speak for background images and video that they use as visuals while they use your voice from your interview over them) that we shot we took them to The Yard for one of Ollie' s skateboarding lessons, got some of Ollie's buddies from school together to play a game of road hockey (using his audible ball as he does at school) and they filmed part of one of Ollie's chess lessons with Josh. 

[Photo description: Ollie and Josh play chess masked in his playroom while the videographer and sound technician capture it.]

Abby, Mario and I are all doing well and keeping busy. Flu shots will be done for all of us as of tomorrow when Abby gets hers. It's heartening to see people going out and getting them more eagerly this year as a result of a heightened awareness of the need to take care of each other and trying to keep each other well and staying at work and school. 

As I reflect that on this day two years ago Ollie had his biopsy that would finally reveal what the bump was on November 19th, 2019, I am still brought to tears often by how much our little family has been through. Despite everything we are mostly happy, healthy and together. I am eternally grateful that we've made it thus far and so proud of all of us for working through it.