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.  

Faith In a Better Tomorrow

I have not been okay today. I knew it was coming and tried not to make a big deal of it or to let the memory of January 25th, 2020 increase my anxiety or sadness, but it was too much for my battered brain and heart to ignore.

This was the worst day of my entire life last year. Worse even than diagnosis day. On this day last year Ollie had gone blind, I was told he had relapsed in his brain and spine, had to tell Mario and Abby, heard that he'd need radiation and a stem cell transplant, and he was transferred to ICU to manage his incredible pain and blindness. 

How do you ever forget your seven year old crying that he felt he was dying and begging you to make the pain stop? How do you forget having to cause your husband and daughter incredible agony because you had to tell them that lymphoma was trying to take over your baby's brain? How do you unremember sitting in a room of doctors who told you that they had no idea why your son was blind, if he'd ever recover any of his vision or if their treatment would definitely get him into remission for the stem cell transplant he'd now need?

I'll never be able to unfeel any of the fear, anxiety or sorrow that I felt on this day or throughout this week last year. I've never been so afraid in all of my life. Diagnosis was scary, but also a relief as we finally knew what it was and had a plan of attack. We were told it was a very treatable form of lymphoma and the ALCL 99 chemo protocol worked in about 75% of cases. Great odds we thought! 

Never did we imagine that he'd be in that dreaded 25% for whom it wouldn't work with the basic 6 rounds of chemo. Relapse and blindness came out of nowhere and thumped us on our butts good. For a brief time I was really feeling desperate and uncertain that he'd make it. My faith had been strong, but felt shaky that week. When I think back to that week I am always, reminded of "Footprints in the Sand" whereby I now know Jesus was carrying me. In retrospect, God sent me help to bolster me and prop up my faith. He sent me incredible messages of love and support from so many people. He sent dear friends to feed and check on Mario and Abby while they were ill.

He also physically sent me: 

- Roisin and Rich with gifts and hugs from St. George on the very day we were moving to the Pediatric ICU and were so overwhelmed;

- Nurse Kim in the PICU to help us through the night he was having seizures that I thought might be a stroke and to insist the next night that I take a parent room to get some real sleep for the first time in over a week while she and another nurse stayed with Ollie non-stop;

- Maria and Toni to nurture me and give me emotional support and physical respite when Abby and Mario came down with strep throat the same week that Ollie was in ICU;

- Vic and Jenna to bring Ollie out of his pain-induced coma-like state to show me my boy was still in there;

- Nurse Maddie whom we loved from 4 North with us in the PICU during a floating shift to help us through some difficult procedures that week;

- Jamie who actually worked in PICU, but was not assigned to us came to see us during her shift every day we were in the PICU bringing fresh fruit, snacks and the best and most needed hugs.

And there were so many other Godwink moments that I now understand to be signs from God that He was with us in our worst moments. 

That week changed the trajectory of our lives forever in countless ways. Naturally the blindness after a full year has completely changed how we support and parent him, how we feel now about ability (not disability), and how we help him to navigate and view the world. But it also changed our family's genetic footprint and our appreciation of medicine and science. That was the week we all went to have our HLA matching done to see if any of us were a stem cell match for Ollie. It started our less than smooth path to stem cell transplant and in the end made us all believers in the powerful combination of faith, science and medicine. 

He had another chimerism test last week. It's the fourth since transplant 6 months ago and it's still 100% Abby's cells. His "Abby treatment" has been unbelievably successful after so much agony and fear. His oncologist says that they've rarely seen a transplant (especially a half match) go so well and they wish they could bottle Abby's cells for others. She does, too. 

It's like these monumental days are now etched into our DNA and sometimes even without knowing why, each of us has reactions to the memories (in my case consciously, in the case of Mario and the kids, subconsciously as they don't remember the dates like I do). Over the last few days each of us has had our moments of freak outs and melt downs that are seemingly unrelated, but I know that they are connected to last year. Whether I somehow give off some subliminal signs or secret code that we should all be remembering these milestones or my anxiety and sadness simply adds to their underlying and omni present similar feelings, I don't know. I do know it's hard and that as my therapist says, it's also necessary to remember and feel it all to work through it and get past it. 

Other cancer moms tell me you never forget, but it does get easier the farther you get away from cancer treatment. The thing is, you never get away from it. The long term effects will always be with us and as Ollie grows up we'll have other potential physical side effects to contend with. 

Today he had an ultrasound on the back of his neck. On the very day that last year his relapse was confirmed and he went blind. What kind of cruel irony keeps putting me at CHEO for tests on already difficult days? It can't be random. So it must be for a reason...maybe to remind me of how strong we are? To show us how far we've come? 

Maybe it's to give us better memories on these days going forward. Today we heard that there is no bump in the ultrasound and our radiologist and oncologist believe it's a simple knot in his muscle. We're going to keep an eye on it, just in case, but unlike that first ultrasound on his originally very visibly evident bump on his neck, they saw nothing to be concerned about. Still, the initial fear in Mario's eyes when we got home and Ollie started talking about the radiologist coming in to look at it himself made me want to weep or rage that this anxiety and the unknown will always torture us to some degree. Thankfully I was able to reassure him that the radiologist saw nothing and a call shortly after we got home from our oncologist confirming this was comforting. 

So we've had an emotionally exhausting day, but it's turned out so much better than this day last year, so we'll take that as a win. I'm not okay, but I am getting better slowly as I work through the last 15 months of fear and sorrow, one day at a time. January 25th, 2020 took a lot from us, but it didn't take our Ollie or our faith.

For those of you who tell me we remain in your prayers, thank you so much. Days like today are why we still need them and are grateful for them.