It was a really long 3 weeks waiting for biopsy results, but in our usual way we found that keeping busy and letting go while letting God worry about it all is best. Thankfully we had plenty of distractions to keep us busy.
[Photo Description: Four of the senior grade classes and some of their parents attend the first in-person school mass at St. George's Parish since the pandemic began in March 2020.]
We've all prayed an awful lot the past few weeks and have heard from so many of you saying that you were praying with and for us, too. It means the world to us to have our incredible army still here sending us light and faith. As it happens we also recently had our first opportunity to actually set foot in our parish for the first time since Abby's confirmation in February 2020.
Just after Easter and the week after his biopsy, we got a message at home saying that Ollie's was one of four classes attending mass in person and parents of those classes were welcome to come or watch online with the rest of the school. Given Ollie's osteoporosis in his back and hip makes it too hard for him to walk all the way (it's 1.4 km each way from the school and back), his Vision Itinerant teacher had me drive him and met us there. Most students were still masked, all teachers were still masked and Ollie never takes his off, so we felt relatively comfortable doing this.
[Photo Description: Ollie is in the grey jacket in front of his Vision Itinerant teacher and sitting with his classmates and dear friends during his school's mass.]
It was both a joy and pretty emotional for me to be back given the last time he had just relapsed in his brain and our journey stretched further ahead of us than behind us like now. Ollie was very reverent and asked to stay and pray a bit extra at the end. I knew he was praying that he was still well and for so many of our CHEO friends who are still fighting. When I drove him back to school he seemed upset and upon further discussion I learned that he'd felt left out that he couldn't yet get communion like his friends. He did his Reconciliation recently, but we're still prepping for First Communion and hope to schedule it before the end of the school year. Yet another reminder of how much he's missed these past 2.5 years, but we're almost caught up!
[Photo Description: Ollie has a blast using Nurse Julie's scanner during his routine CHEO oncology appointment for bloodwork and check up. Julie is incredible with the kids and was wearing a Batman shirt with cape. She laughingly said it was great to work in a place where any day is dress up day!]
We had his routine visit with CHEO Oncology the following Monday. Bloodwork looked good other than slightly higher levels for his liver function (not super concerning and likely attributable to a change in the disagree of his Lorlatinib to 75 mg a few weeks before) and Dr. Abbott looked at the remaining bumps and the stitches from his biopsy and commented that she could see why I had been concerned and felt it was good that we biopsied. She said she would push for results sooner than the 2-3 weeks dermatology had quoted, but knew that all departments across hospital were short-staffed due to COVID.
Later that week I went with my "blood buddy" Marie-France to make my 9th blood donation at Canadian Blood Services. It is our ritual now that every 84 days we give blood in Ollie's honour to pay it forward to other families trying to survive what we have. Each and every time I feel grateful to every single selfless person who gave to save my child and know that mine is saving someone's child, too. In just a few weeks I'll pass two milestones...my tenth donation and two solid years of donating every time I have been able (my hemoglobin was too low one time, but otherwise I have given every 84 days). I started when we were waiting for Ollie to get back into remission and I knew that the pandemic was causing dangerously low levels of donations. They told me before his transplant that they couldn't guarantee that there would be blood available if he needed it and I told them just to hook me up and give all of mine to him. I knew they wouldn't do that for real, so I decided to start getting it into the blood bank myself and to try to get more people to help me.
Given so many people in this province have been sick with COVID in recent months and not donating, there is once again a 25% shortage in the reserve of blood. If you are able or have never tried it but are willing, I encourage you to donate. It's so easy, takes less than an hour and honestly there are so many like Ollie whose lives depend on it being there when they need it. You can even join our team, "Donate for Ollie and Abby" through the "Partners" section of the Give Blood app or when you are online scheduling your donation.
Ollie enjoyed the recent super warm weather by helping mama wash the van at a DIY car wash. He'd never done it sighted before he went blind and was so excited to hold the pressure washer and feel its power. The entire time he yelled, "Woohoo!" and laughed his head off. Worst actual wash van ever had, but best time doing it!
[Photo Description: Ollie sits on the deck at a table playing Tech Deck finger skateboarding.]
He's also gotten out more with the nice weather, but we are always careful to diligently use sunscreen, have him wear a hat and sit in the shade whenever possible as having had chemo, radiation and a transplant he is more susceptible to getting skin cancer and sadly he also has a Vedic pre-disposition to it as it runs in my family, too. In fact recently I had a sun spot removed by a GP Specialist in Dermatology just in case. After all of this you are so much more aware of every little unusual mark on your body and want to be diligent to get it checked early.
[Photo Description: Abby's birthday donuts from Suzy Q's that read Happy Birthday.]
Abby's 14th birthday happened recently. Now that she is older they don't really do "parties", but simply hang out, marking the day with simple-gifts and lots of candy it seems. She was happy with that, so while I mourn the loss of her last real years of kid parties, she had a lovely day and was satisfied.
Abby's birthday fell on Mother's Day this year as it often does, so she and I went for mother daughter pedicures to mark the social day for both of us.
Ollie's scans went well, but it was a long day at CHEO from 9 am arrival to begin driving the contrast and appointments all day until 5 pm. Fighting cancer even when in remission is definitely way harder than any job I've ever done.
The hardest part of the day for him ended up being the removal of his biopsy stitches. I had asked at the last minute if someone in the Medical Day Unit (MDU oncology clinic) could possible remove them as they were really bugging him and we didn't have an appointment to see dermatology to remove them until the following week which would be four weeks with them in and they should have been removed after two. Apparently they are using non-dissolving stitches due to supply issues, so one more side effect of COVID and further strain on our hardworking nurses. Kind nurses in the dialysis unit attached to MDU made time to do this for him. Unfortunately it was very stressful and apparently painful for him as the stitches were pretty entrenched by then. With lots of Kids Kicking Cancer power breathing and mama coaching him, he got through it, but there were a lot of tears from a kid who's pretty tough.
[Photo Description: Ollie lying on the CT bed with his arms reading on a wedge above his head and his hands holding a small stuffed koala bear given to him during treatment by his friends Henry and Dylan. The IV with a coiled cord to the contrast to be injected is in his right arm.]
Although he doesn't like the contrast he's now a complete pro at both drinking the contrast and the injected kind, so had no problem with the insertion of his IV nor drinking a cup of contrast every 30 minutes for 3 hours!
Before scans and while drinking contrast we had scheduled an in person visit with his child psychologist in MDU and it was a pleasure to finally meet her in person after 10 months of seeing her exclusively online.
The rest of the time we hung out in MDU's playroom doing crafts with wicki sticks and visiting with MDU staff who happened by. One child life specialist came over to say help and reminded us that she had been a student doing a placement at CHEO in oncology when Ollie was first diagnosed and now works there! She was so pleased to see that he was doing well. Unbelievable that it's now been 2 and a half years since this all began!
Ollie missed one week or skateboarding due to the biopsy, but was insistent he was ready to go back the second week. He's progressed so much this year that it's amazing. To see some videos, go check out his Instagram account (cnib_ollies_hope)! Also our episode of AMI-TV's "We Are One" telling Ollie's story and how we all adapted to his blindness airs June 2nd at 8:30 pm. You'll see Ollie starting his skateboarding last fall and be able to compare how he's progressed! Here is the trailer.
Ollie and Hope are also participating in the CNIB Pup Crawl again this year in memory of his friend Mason's Buddy Dog Queenie who became ill this year and had to unfortunately cross the rainbow bridge long before her time.
In other developments, our old stove died and was going to cost almost as much as a new one to repair, so we had to get a new one. This is also part of Ollie's story now because we took the opportunity to research and buy a me LG SMART range. This is so that in future as Ollie agrees he will be able to use the active himself because the oven is voice activated with Google Home or Amazon Alexa and you can run it from your SMART phone which one day he'll also have. Since a stove lasts 10-15 years it made sense for us to do this for him to ensure accessibility. Just one more example of what we are learning about how to help him have an accessible life.
In other exciting news, two sweet Algonquin College Therapeutic Recreation students have written a book based on Ollie's story with cameos of other actual CHEO oncology patients, too. It was their end of the year project and they decided to self publish the book and give all proceeds to Candlighters Childhood Cancer Support Programs. You can pre-order yours here on Sam's Therapeutic Recreation website!
The story is about Ollie who loves astronomy (creative license taken here so the story arc works better), gets cancer and loses his vision, learns through a therapeutic recreation specialist in hospital that he can still enjoy stars because each has a unique sound, then meets another boy at hospital who used to love skateboarding, but is now wheelchair bound because of his cancer. The boys trade telescope for skateboard so each can learn a new passion that they can still enjoy thanks to accessibility options. Hope makes a cameo in the book (and is on the cover), as does a brave CHEO kid named Sophia who is now a star in the heavens. This book is so positive and deals with cancer effects and death in the most beautiful ways. We are grateful to Sam (whom we met through the Snow Angels for CHEO Campaign this year) and Kaitlyn for their interest in Ollie's story, for making the kids in the story the brave, unstoppable heroes that they really are and for their generosity in donating all proceeds to help other kids like them who are still fighting.
Two days after Ollie's scans our amazing oncologist Dr. Lesleigh Abbott called me to report on the scans. I was in the car running errands and as I held my breath she began with, "He's stable with no evidence of disease." Huge breath released. She's so used to this that she even waited for me to breathe before continuing. How difficult her job is when she has to deliver the bad news! I've been there with her and was so grateful for her compassion then, too.
She also configured that she'd talked to dermatology and pathology about the biopsy results and they were certain that it was NOT any form of cancer or infectious disease. She did say they were still running a few tests to see if they could pinpoint what the spots actually are and they would follow up with us.
She then explained that what minor change there was in his scans just confirmed that they are now identifying his hip deterioration as Avascular Necrosis (AVN), which means that bone tissue is dying due to lack of blood flow. There are various treatments for this and it's not much worse, but we'll know more when we see the bone specialist in June. Also, they can see that his left eye that is still awaiting surgery thanks to the COVID backlog is experiencing more bleeding. So we've sent that off to his opthamalogist and I verified this week that it's been sent to his Retina specialist and next week I begin being more of the "squeaky wheel" to push for the surgery like I did before Christmas for the first. Otherwise all stable in his scans. Praise God for prayers answers once again and our incredible gratitude to all of you who sent us prayers and positivity! We are infinitely blessed.
Yesterday we were back at CHEO for bone density scans and xrays for the bone specialist and endocrinologist to take a closer look at in the coming weeks.
We also had an appointment with Dermatology to follow up on their biopsy findings. They are fairly certain that the spots are leiomyoma.
"A leiomyoma, also known as a fibroid, is a benign smooth muscle tumor that very rarely becomes cancer (0.1%)."
They can be found in various places inside the body, but also on skin. They can be itchy and painful or not (his are not). If not itchy or painful they suggest not taking medication and just monitoring as it can lead to kidney disease.
There is the genetic kind and random kind (just like cancer) and they'll do a blood test to determine if he had the genetic kind or not. They say it will be monitored through our oncology team from now on. They did say that they've checked all of the meds and treatments in his chart against it to see if there are any known causes, but came up with nothing. I inquired if there might be a correlation between it and his thinning skin in those areas thanks to prolonged use of Dexamethasone because of his relapses. They said they would check.
So just one more thing to monitor. Maybe related to the cancer and maybe not. Grateful it's not something worse, but sure wish results were always more definitive.
Overall our results are great so we are thrilled and grateful and looking forward to the next steps. We'll share info from the bone specialist next month and tell you how we plan to celebrate his second re-birthday/anniversary of his transplant/second hero day for Abby. Until then, count your blessings, donate blood if you can and be well!
