Scan and Biopsy Results

[Photo description: Ollie found the free popsicle stash in CHEO's Medical Day Unit (MDU) oncology clinic while waiting between scans and cheekily kept asking if his tongue was blue!]

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.

[Photo Description: Dawn holds up her favourite snacks after donating blood at Canadian Blood Services recently.]

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. 

[Photo Description: A screen capture of Dawn's GiveBlood App showing that so far 16 donations have been made by members of the "Donate for Ollie & Abby" team.]

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. 

[Photo description: Ollie washes the van using a power sprayer.]

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. 

[Photo description: Abby and Dawn having pedicures at a local spa for Mother's Day/Abby's birthday.]

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.

[Photo Description: At CHEO on scans day Ollie holds a cup of orange flavored contrast with a straw in it as he sticks out his tongue making a grossed out face.]

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. 

[Photo Description: Ollie spouses his eyes and braces for the buses to remove the first stitches from his shoulder where the biopsies were.]

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! 

[Photo Description: Ollie poses with Quickly Koala  while waiting for his next scans in Nuclear Imaging at CHEO. His right arm is covered to protect his IV.]

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! 

[Photo description: Ollie getting ready to do a drop in at The Yard on his skateboard while instructor Jordan holds his hands until he is ready.]

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. 

[Photo description: Hope sits on the kitchen wearing her and Ollie's CNIB Pup Crawl bib. Our new LG  SMART stove that can be voice activated and run from an accessible SMART phone so that Ollie can use it in future sits behind her.]

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.

[Photo description: Cover of the children's book, "Ollie's Telescope" written by Samantha Smadella and illustrated by Kaitlyn Blanchard, showing a drawing of a bald Ollie standing on a black planet with a black dog beside him looking out into a multicolored universe with many stars and other planets.]

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. 

[Photo description: Ollie celebrates clear scans by viewing out a candle in a brownie.]

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.

[Photo description: Ollie lies on the bed of the bone density scanner at CHEO.]

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!

+100 Days Post Stem Cell Transplant

Wednesday was +100 days post stem cell transplant and scans day. We were at CHEO from 12:45 pm to 6:15pm. Ollie was incredible. I think it might have been his best day outpatient at CHEO ever. 

 He is now a totally calm and cool pro at getting pokes and didn't stress at all about getting his poke to have the IV inserted for the CT and MRI contrasts. 

He had been concerned about drinking the contrast for the CT, but thankfully I had a triple Pushpop sucker in his bag and he took licks in between and got it all down no problem. That's a pro-tip. Always have suckers, ring pops, etc. when you take your kid for tests in hospital. Thank goodness I had left some in our bag!

His ECG was quick and uneventful.

We got Llama Llama Blue Pajamas out to help with the scans. He's been in every scan Ollie has ever had. Most internally photographed Llama ever! 😜

CT went so great! We had two of our favourite imaging helpers in Sarah (the tech) and Jean (the nurse). Both know Ollie from so many previous scans and were happy to see Llama and talk about Ollie's Pizza. As always I was thankful for these amazing women who are so patient and kind. 

We bumped into Jamie at CHEO after the CT (we always seem to have radar and come together by happenstance often) and she had a few minutes to come back to MDU and hang out with us between meetings. She marveled at the difference in Ollie (last she really saw him was in June pre-transplant) and couldn't get over his returning energy level.

The MRI was backed up due to an unexpected trauma, so we waited an extra 35 minutes before we went in. Normally Ollie would have been so upset by this, but he took it into stride, only asking a few times when they were coming. When they came to get him, wouldn't you know it, we had the same technician that we had at our very first MRI at CHEO last year in November 1st. Complete deja vu.

They're taking extra COVID precautions to keep the MRI safe and clean, so he was completely PPE-ed and thought it was funny. 

I opted to sit in the MRI room with him as I had the first time and not since (Mario did his last MRI with him at Sick Kids and for all of the other MRIs he was sedated so they didn't allow parents in). I was stressed, but didn't realize how triggering this would be. From the moment I sat down in the hard red plastic chair and donned the red and black ear protectors, I felt anxious. Ollie appeared cool as a cucumber. 

The minute the machine started banging I could feel my heart begin to beat faster and escalate with each series of noises. I started to hold my breath and feel overwhelmed. Thankfully at that moment I remembered the words sent by my therapist in an email that morning. "Please try to exhale and stick to the present moment as much as possible." I dragged myself back from the panicked feeling I had in his first scan when we were so stressed and didn't know what he had, but knew it didn't look good. I took deep breaths and reminded myself that we got through it all and we're okay. That today was just a formality to confirm that he is as well as we can see he is.

It was a long hour and since I had to leave my metal watch and my phone in a locker, I had no idea how much time has passed. No clock in there, either!  Ollie was a champ. In about the last 12 minutes (3 scans of about 4 minutes each passed) Ollie asked loudly when he'd be done. Then he continued to be calm and still for the last scans, even when they came in to inject the dye in his IV. I remember vividly him freaking out that first time. 

In fact a few minutes later when he was done, I told the technician and her colleague about that first time and how kind she had been to Ollie when he freaked out, giving him a second chance to redo the scans and how that had shaped how we approached tests all year. Then Ollie told her about his Ollie Pizza and turns out she lives next door to the Hanna family who owns Gabriel Pizza! I love that about Ottawa. In a city of a million people you can still have so many people in common and so few degrees of separation. 

That was it for our day. Because he was amazing, he had been allowed to choose a new Lego set in the gift shop. He loves going there because truly it is the only 

store he's been allowed to shop in physically in a year. A kid who hated shopping with me before now wishes he could go into ANY store with me.

Now nothing left to do but wait for results. Our oncologist knows how much Ollie hates waiting and asked if okay as usual to call us with results, which was great. Last night Ollie was concerned about the results. I told him we'd already kicked cancer out twice this year with remissions and while I sincerely felt that he was well and desperately hoped we'd never have to battle cancer again, we'd fight it as many times as we had to in order to get him well and keep him with us. We fight as one. That reassured him and we agreed to just try to have a good day today.

And it was a good day. Ollie's Vision Itinerant teacher had arranged for him to be online with three other boys (all 8 and in grade 3) who were also part of the blind and low vision program. Ollie was so happy to meet kids like him. We had chatted with the Vision Itinerant Team Lead back in June to plan Ollie's return to school with this program, so Ollie was familiar with her already. She did a terrific job taking the boys through a story and tactile craft. She wove in some Braille and knowing Ollie couldn't yet read a lot in Braille, she had him type out the first letter of each word in Braille and praised him at always knowing the right dots for each letter considering he'd just learned Braille this summer. He was beyond thrilled. At the end he enthusiastically agreed that the group should do this again soon. He rarely gets this excited about anything school related. Connecting with kids like him was so good for his mental health.

This afternoon the kids had their second private session with Kids Kicking Cancer. Senseis Lyne and Cody were so responsive to his needs. They knew last time he really wanted to do real karate moves, so they started with stretches, telling the kids that you always stretch before a fight.

We cracked up at Chewbacca the cat joining the stretching...he seemed to be hanging on Sensei Cody's every word! 😄

When Sensei Cody realized Ollie was getting confused about a move and couldn't keep up, he suggested Ollie lead the count. This was so perfect as it made Ollie feel powerful instead of weak and slow. His energy and motion is coming back but some things are still hard for him. This made him set the pace and because of it, he even pushed himself to do more.

Ollie finally got to do stances and punches. He was so thrilled and proud of himself. He was elated to do the karate yells, too! 😄

For safe sparring, Sensei asked me to get a pillow. My brilliant silly boy suggested we bring the enormous bear he was given in hospital by the staff of the Calendar Club down instead. The bear has never been given a name, but Sensei Lyne insisted that an opponent needed a name, so he became Tom the Bear. The kids had fun taking turns sparring with Tom safely. 

The final breathing and relaxation exercise that Sensei Lyne took them through was calming and cleansing. I could see the tension leaving both kids and by extension, I felt calmer. 

The timing could not have been better since right after class I got the call from Dr. Brianna (Empringham). She explained that they had compared his scans from relapse in January and April and confirmed that the MRI looked better than his June remission scan. CLEAR. In fact they can see that the inflammation in his optic nerves had gone way down, although there was still a bit detected. She explained that they'd done the same with his CT scan as well. 

Only issue in his CT was the hip osteopaenia that they already knew from his bone density test last week. They'll do an x-ray of his pelvis on Monday and we're seeing the bone specialist and endocrinologist next week anyways to formulate a plan to improve this. 

Otherwise, scans were CLEAR.

COMPLETE REMISSION. 

ALLELUJAH!

Shortly thereafter, generous friend Tara (and Ollie's friend and classmate Will's mom) dropped by and left Suzy Q doughnuts on our porch, knowing we were waiting on results and they turned out to be Ollie's "victory doughnuts" as he dubbed them. Delicious victory!

 After dinner (of what else but Ollie Pizza from Gabriel Pizza?!), we finally carved our huge pumpkins chosen at the Parkdale Market this week (too risky for us to brave a pumpkin patch this year). We put on Halloween tunes and danced and sang while carving.

We're obviously not going out this year (couldn't really have even without COVID), but rituals and traditions are important and we cannot skip things just because things aren't normal (boy did we learn that over the past year).

This was the first real year that Ollie was big enough to do much of it himself. My heart sang that his blindness didn't deter his joy for it this year. He scooped goop vigorously and happily. 

Abby and Daddy worked on hers. Mario was excited to use the new pumpkin carving drill I bought super on sale after Halloween this year. LOL

Ollie explained in detail how he wanted his scary pumpkin to look. He helped me cut and took out the carved pieces. He felt each cut after and declared it perfectly spooky. 

Abby did the goop scooping and design, but left the carving to Daddy. Their final result was great.

Just as we were finishing up, M-F and Stephen stopped by and insisted we all come out for a distanced porch visit. We had texted them as well as family add a few close friends who have been there on this journey with us every step of the way, so they came with drinks to toast our good fortune and Ollie's health. 

We are feeling so very blessed and thankful. It's been a long and often agonizing road, but we're finally on the healing path of wellness. We're certainly not done and Ollie will continue to be monitored weekly at CHEO over the next few months, but now we know definitively that it is possible to keep him in remission for longer than a few weeks and that his system has truly been reset by the transplant. 

Nevertheless, cancer is a lifelong scourge in many ways with its many side effects (some that we may not see for years) and the possibility that it could always come back. We know families who have had the stem cell transplant and still end up relapsing. So Ollie continues on the one immunosuppressants and his Lorlatinib as a maintenance drug, likely until a year post transplant. 

We'll cross every bridge as we come to them. Please let our future path be free of major bridges. In the meantime we will just try to live our best life with gratitude for the incredible gift of keeping our son that God, science and an enormous amount of love and kindness from all of you have given us. 

Poker faces...

Apologies for posting so much and if what I post is upsetting to any of you as that is not my intent. This blog is partly to inform others of our progress and partly to help us in processing all of this ourselves, so we will likely post more rather than less for the next little while. 

Today we are back at CHEO and started the day in cardiology. It went well, but as a person who needs visual feedback to communicate and understand what is happening, I am finding these tests stressful. All medical staff doing tests (MRI, CT, ultrasound, PET scans, etc.) are trained to be kind yet neutral. You find yourself searching their faces and their eyes for any changes or emotion that might indicate if that image they're looking at on the monitor is normal or has something unusual in it. But they all have poker faces and it tells you nothing and you are left in limbo yet again. I would be a horrible medical employee as my face can't lie.

When we were here last week for his lumbar and bone marrow punctures, he had to have a line put in for the IV and the general anaesthesia. Naturally we tried to encourage, cajole and bribe him to let them do it, to no end. Finally there was no choice but to hold him down and it took four of us. We just repeated that we loved him and hated it, but had no choice as he needed these procedures to get well. Sadly he will get used to it as time goes on (today is the fifth time so far), but what struck me at the end was that one of the poor dedicated nurses had tears in her eyes after and I could tell she was a mama and hated that part of her job. 

Happy to report that he just had the fifth line put in for the CT with minimal fussing, no kicking or screaming or crying and it was so fast! So proud of our little superhero!

Every staff member that we have encountered at CHEO so far are angels masquerading as medical staff. Their patience is incredible and their compassion is limitless. During the bad stuff they have their poker faces on, but after they praise, they comfort and they bolster patient and parents to prep us for the next battle. Their kindness has moved me to tears so many times over the last month.

I also want to say a word about poker faces of friends and acquaintances. On Friday I was at a school event with Abby and knew that a lot of parents knew our news. Some came over and simply hugged me and then left, some came by while I was talking to others and just rubbed my back or my arm as they passed me, while others were able to stay and talk and ask frank questions and give verbal support. Believe me, I understand where you are and have been there myself many times with other families in this situation. Now that I'm on this end of it, I can tell you that every gesture is appreciated and often actions speak louder than words. There are also no right words to say right now, so if you feel you can use words just be honest and say whatever you feel.  I'm not one for swearing, but my favourite reaction to the news so far was a dear friend simply responding with the F word. That said it all in that moment.  

Hugs to you all.