Bumps, Biopsies and Bands

[Photo description: Ollie gives a thumbs up and eats a slice of pepperoni pizza from Gabriel Pizza in the Candlelighters Ottawa suite at the Canadian Tire Centre while waiting for the Imagine Dragons concert to begin.] 

I've been debating whether or not to share this. I don't want to unnecessarily cause anyone any stress or in any way be "the boy who cried wolf". In the end I decided that (as a dear and smart friend pointed out to me yesterday), it's not my job to protect everyone and some close to us might be hurt or mad that we didn't share what's happening. I also know that we're trying to give an accurate and real picture of what life in pediatric cancer really looks like and this is so common in this world, that I must include it. 

About 2 weeks ago and two weeks after COVID invaded us, Ollie had three little bumps show up in his right armpit area. I knew this because Mario or I generally help to ensure he gets into the shower regularly and I showered him that day. It is an opportunity for us to also keep an eye on what is happening to his body and look for any strange bumps. 

[Photo description: Ollie's three current bumps/lesions around his armpit. There are lymph nodes in the armpits and originally Ollie had lymphoma in both of his that lit up in his original PET scan. The scarring around his spots are stretch marks due to thinning skin from the long term use of Dexamethasone steroids to control the inflammation in his brain after relapses and his Broviac central line that was in his chest.]

I asked Mario about it and he said they'd been there a few days. As always I was more stressed in the moment than Mario was, but he reminded me that this happens and would likely go away as usual. So I took deep breaths and tried not to worry much about this as Ollie has had rash-like lesions or bumps appear off and on since his stem cell transplant in July 2020. Usually they stay for a few days then leave as quietly as they came. Generally his transplant team has suspected it's just a bit of Graft Versus Host Disease (GVHD). The traditional school of thought is that a little GVHD is a good thing. This happens when the donor's cells (Abby's in this case) attack the recipient's healthy cells, but this also means they are attacking any leftover cancer cells in the recipient (Ollie), too. It can appear as rashes or lesions.

[Photo description: On the back of Ollie's a few weeks post transplant bald head a small red bump is circled in red. This bump disappeared within days, but was the first evidence of possible GVHD and was the first episode of our fear of relapse since transplant.]

A lesion is a slightly raised spot that can look somewhat like a rash, like acne before whitehead appears or mosquito bites. Ollie originally had three lesions before diagnosis. The bump on his neck that grew and two tiny ones on his belly that never grew. Initially doctors did not think his belly bumps were related, even though I pointed out that they appeared about the same time as the neck bump. After his biopsy and Anaplastic Large Cell Lymphoma (ALCL) ALK+ diagnosis, I reminded them of the belly bumps and requested a biopsy of those. Dermatology did it under sedation when he was having another procedure in the OR and sure enough, those were ALCL, too.

So finding rashes and legions is not abnormal for us, but I have learned better not to freak out each time it happens. So I kind of put it out of my mind and in the craziness of the past few weeks (one of Ollie' s teaching team had COVID from a family member, so his schedule was a bit less routine with him home a bit more and I am gradually returning to work and trying to wrap up a bunch of volunteer commitments) I actually forgot about it! Fast forward to this week on Tuesday evening when I was helping Ollie get ready for bed (generally Mario takes care of helping him dress as he is getting older and more comfortable with Dad). Taking off his shirt I saw that the three lesions were STILL there! 

[Photo description: A spot on Ollie's belly in the months after transplant morphed into an eczema-like spot. It cleared up with hydrocortisone and doctors suspected GVHD. It was worrisome for days as his original bump on his neck eventually was dry like eczema, too.]

Now Mario (like a regular dad) tends to brush off little stuff and tell the kids to shake it off or ignore it, so honestly he didn't think anything of the bumps. Frankly he has no idea what day it is or of the passage of time, so when I asked why he didn't flag that they were still there, he honestly didn't think it had been more than a few days. He still didn't think it was anything to be concerned about, but I reminded him that we don't have the luxury of just hoping it's nothing because of his history. I put Ollie to bed reassuring him that it likely was minor and he shouldn't worry because that was mine and dad's job to worry about him and we'd always do everything we needed to in order to keep him well.

It had been two weeks. My PTSD started to kick in, but I breathed deep and tried to analyze the situation logically as I always have to make medical decisions for him. When looking at the situation I began to add up the following:

- We'd reduced his dose of Lorlatinib from 100 mg to 75 mg 5 weeks before. The intent was to decrease side effects such as his weight gain and anxiety. He'd seemed to respond well.

- His appetite had significantly reduced and weight had gone done a bit since then, too. But lots of appetite and losing weight can also be signs of cancer.

- He had 3 persistent lesions there and two others on his back under his armpit. They did not go away with hydrocortisone like previous spots did. The original belly spots didn't respond to anything either.

- Mario had stayed in the Clubhouse with him last weekend for a sleepover on the sofa bed and commented on how incredibly sweaty he'd been both nights. This is not uncommon for Ollie, but night sweats can be a sign of cancer.

- Ollie had been more tired lately having a hard time getting up in the morning and in some days falling asleep in the car on the way home from school. Fatigue can be a symptom of cancer.

- When looking at the side effects of having COVID, every one of these symptoms could also happen in an immuno-compromised person in the months after having COVID, especially in the first month.

[Photo description: Bottles of Lorlatinib (called Lorbrena in some countries) in 25 mg and 100 mg doses are shown as well as the three 25 mg pills that he currently takes and the former 100 mg pill that he took previously.]

It was already late so I reached out to my cancer mama sisterhood for advice and understanding. When you have an incredible network of cancer mamas around the world someone is always awake and there for you. Sam in Australia (whose son Noah we joke is Ollie's ALCL diagnosis twin as they were both diagnosed in November 2019 at age 7) was up and immediately responded. We chatted online about the situation and whether I was being paranoid, how I felt and options. As always we made each other feel better about the fear and after effects that we live with daily. It is so strange and yet so beautiful when someone you have never physically met loves you enough as a fellow human being who is hurting to put aside their own worries and wades into yours, knowing full well they may be triggered by it. I cannot express enough how important it is to have people who have lived what you have on your side. I am fortunate to have so many amazing friends and family who support us and I am grateful for every one, but no one understands you and how you feel like someone who has walked miles in your shoes. I am grateful always for Sam and also to mamas Christine, Julia, Lisa and Kelly who live this daily and helped me handle the myriad of emotions over the past few days.

So now I was certain we needed to tell his team whether I was being paranoid or not. I'd rather be paranoid and wrong (please let me be wrong) than too late. And if it is COVID or an exposure to some other childhood illness, his team needed to know.

I messaged his post bone marrow transplant (BMT) clinic nurse Julie and explained the situation, including pics. I told her I knew it was not urgent, but it was important that we check this out and that I was flagging it for Dr. Abbott for her to look at during our regular checkup and blood work next Monday. Julie is amazing and called me at 7:40 am the next day, telling me she'd shared with the doctor and would let me know if any additional tests would be needed. So I went about my day, confident that his team would know what to do. Julie called me back a bit later and said Dr. Abbott was asking for a dermatology consult to look at him and they'd try to line it up for our Monday visit. 

Less than 30 minutes later I got a call from the receptionist at the Medical Day Unit (MDU) cancer clinic at CHEO saying Ollie needed to be there the next morning at 8 am. Shocked I said, "For WHAT?!". The new receptionist apologized and said it was for a dermatology consult, that they'd put an Emla (skin numbing cream) patch on and a half hour later they'd did a biopsy of his bump under local anesthetic. I thanked him and got off the phone with the overwhelming feelings of gratitude that they were acting so fast and fear for the same reason. This is not new. I felt similar in the weeks after his original biopsy as we waited for specific diagnosis and they prepped with additional scans and tests while we waited.

[Photo description: Ollie sits on a hospital gurney beside his primary oncologist Dr. Lesleigh Abbott with her arm around him in a CHEO exam room in the Medical Day Unit. Both are wearing masks and Dr. Abbott has a stethoscope hanging around her neck.]

When Ollie got home I explained that just to be on the safe side the doctor wanted to do a small skin biopsy to be sure this wasn't his cancer coming back. He asked a lot of questions about the biopsy. Would he be sedated again? Would it hurt? What if the Emla doesn't work? Are we sure they're going to do a biopsy or is it just maybe? How would they do it? Could he choose a punch biopsy vs. a scalpel/razor biopsy? Questions that no 9-year old should ever have to know to ask and just break your heart when you think about everything he's been through to even understand what he felt he needed to know this time.

[Photo description: A skin punch biopsy tool like the one used at CHEO. It has a green rubber handle and a hollow metal tip with a sharp edge.]

A skin punch biopsy is done under local anesthetic (think going to the dentist and having freezing put in for a filling) and uses a punch (at CHEO they called it a cookie cutter) to make a small whole and take the skin out as a sample (think Dr. Pimple Popper).

So I let his school team know what was happening and that he wouldn't be in the next morning and maybe not at all depending on how he felt after. I explained to Ollie in detail what they would likely do and that he was brave and strong and while the anesthetic likely would hurt a bit going in, I'd hold his hand, we'd hug Llama Llama Blue Pajamas and use our best Kids Kicking Cancer power breathing to get through it together. My ever pragmatic Ollie went to sleep with the final words, "Mom I really hope it's not cancer again, but if it is we'll just kick lymphoma's ass again! Love you!" 

As he fell asleep I lay there hugging him and crying silent tears so as not to upset him while I thought about how brave and strong he is and how unfair it is that we have to put him through more after all he's already lost. And I prayed that this is not cancer again and only minor whatever it is. I thanked my amazing God for letting him live so far and asked again that we not have to fight again, but if we must that he will win again. Then I slept poorly and got up to go to hospital. Ollie like the champ he is got up in good spirits, ready to show lymphoma who is boss. 

We talked about how things would go on the way to the hospital and then listened to his Bye Bye Lymphoma playlist the rest of the way. Neither of us ate because we were too nervous and decided we'd go to Tim Horton's for a treat and the Toys R Us for a new toy after to celebrate his bravery. He needs nothing, but I have learned that the promise of a prize after doing the hardest things is a small price to pay for his calm and courage. 

We got to CHEO MDU, and dermatology arrived promptly. We answered a few questions and then they got to work. One of the doctors knew us because she'd done a rotation as a student with Dr. Abbott when Ollie was still in treatment. She reminded us what an excellent doctor we have and I agreed telling them how amazing it was that they would come the very next day after she asked them. I have seen how she interacts with others in hospital. She always treats everyone with respect, affection and gratitude. Her superpowers seem to be empathy, and building relationships (beyond getting kids well obviously), so I am not surprised really that when she asks for help she gets it quickly. That has been our experience each and every time she asks for a consult somewhere in the hospital for us. 

They checked out his back and confirmed the smaller raised bumps all across it were dermatitis from his sweating (which we knew). They confirmed that the spots were slightly raised and could be lesions or a raised rash of some sort.  I had to flag for them that Ollie was blind because as usual that doesn't pop up prominently on his chart and I'd already put his mobility cane away so there was no obvious sign of his blindness. This is an example of why they often call sight loss a hidden disability and we continue to raise awareness, even among medical professionals. So they took extra care explaining everything to him, letting him feel the package for the punch biopsy they'd use and explaining how it works. 

[Photo description: A stock image of a local anesthetic needle being used to freeze the area for a skin biopsy (not Ollie's).]

He laid down with Llama under the opposite arm and I held his hands from the end of the bed so he could squeeze them. I'd put on his playlist for calming and distraction. The local anesthetic was painful for him, but he squeezed my hands hard (a wonder he's never broken my pinkies) and breathed deep while counting through it. Counting also helps because the brain has to focus on remembering the number sequence instead of focusing on the pain or discomfort. We learned that one during radiation as we'd count together over the speaker what was left on the timer. 

Once it was frozen, he said it felt weird, but not bad. Because he was so good they were able to take two biopsies to be sure that they had a good tissue sample. They finished with two stitches in each which he stressed a bit about as he's never been awake the few times they'd put a few stitches in him. Bandages covered them and he was all set. They told me two weeks for the results. I asked couldn't they compare it to his earlier ALCL tissue sample (is kept for 20 years for reattach and comparison) to speed up the process. Their standard answer was that it generally takes 2-3 weeks for skin test results. Julie later told me that she knew Dr. Abbott would be pushing for faster results if possible. The first time they had to send his sample to The Ottawa Hospital, so we had a diagnosis of Non Hodgkin's Lymphoma in a week, but had to wait a second week for ALCL. Given it is a very rare form of cancer with only 5 kids in all of Canada getting this each year, we get that. We remain hopeful for faster results, but that doesn't make the wait any less stressful.

[Photo description: A drawing of a skin punch biopsy being performed as well as a drawing of the layers of skin and fat that are punctured. Copyright of the Mayo Foundation for Medical Education and Research.]

I let him play hooky from school after going to Tim's and Toys R Us. He'd been through enough for one day and I needed him to be near me. His teachers said not to worry and know that they were praying for fast results and good news.

I managed to do a couple of hours of work on the laptop sitting with him while he played quietly and rested. He was tired again, but this time I knew it was emotional and mental exhaustion from the anxiety and holding it together because I felt that way, too. 

[Photo description: Ollie's two bumps stitched up after biopsy. He already has many scars from thinning skin from the long term use of Dexamethasone steroids to control the inflammation in his brain and his Broviac central line that was in his chest.]

Mario was supposed to knock off work early enough for me to take Abby to a medical appointment that afternoon, but was still online fixing a network problem when I left so Ollie watched his shows quietly. Two hours later when we got back, Mario was still online fixing it! So he promised Ollie he would take Friday off to make up for it and Ollie could stay home with him to rest and play quietly. He'd woken up really tired and kind of grumpy on Friday so this seemed best anyways and his teacher said he was already ahead in his work so not to worry. Friday morning he and I had his online session with his CHEO child psychologist. This is an appointment that Ollie makes each time at the end with Dr. Emily Johnson. He chooses if and when he thinks he'll need to see her again. Typically it's 2-4 weeks between appointments. He was angry at me for "making Dad" put the tires in the van before they could play today and taking "his time with Dad" away. As we delved into things further it became obvious that he had a lot of big feelings about the biopsy and having to wait around for us to spend time with him the day before. This is a throw back to inpatient cancer days when anytime he was sick we dropped everything to simply be with and play with him. Both for his sake because he needed the distraction and joy and for us because we feared the worst and didn't want to have any regrets. So for him when he's sick and there are procedures it's all about him again and he doesn't understand that we still have to juggle it all around our "normal" life and obligations. 

It all came out in his session that he was predictably mad and sad that he'd had to have the biopsy procedure and how none of us felt the pain that he did. He said, "I know you all feel pain in your hearts for me, but you don't feel it in your body, too!" And I cried and told him he was totally right and daddy and I wished every moment that we could take the pain instead of him and how brave he always is and how proud we are of him every single moment. And then he hugged me and said he was sorry for making my heart hurt. It was all I could do to hold him and hold my fragile heart together as I marveled at his incredible love and empathy at a time when he was the one hurting most. And as always this was my sign to keep going and to hold on to my hope. Because if he can keep going and being humane no matter what, so can I. People think I'm strong, but the strength in him is often what has propelled me forward when I am uncertain if I can. By the end of the session Ollie was feeling better and I felt like I had an emotional hangover. Dr. Emily is incredible and asked me what additional support we need and reminded me to reach out because she and the amazing psycho-social team were there for us all.

Mario is remaining stoic and says he is certain that it's not cancer. Abby is quiet about it all, but knows we're here to talk. Sometimes like daddy she expresses her fear in anger, so we've seen her temper flare a bit more easily and regularly the last few days over things she'd normally not get upset over. Ollie and I are more easily brought to tears in frustration the past few days. Time to make another appointment for family therapy.

Friday Ollie enjoyed his time with daddy while I ran errands and took Hope out to the CNIB Canine Centre in Carleton Place for a routine eye exam. Having the bit of time on my own was therapeutic and as luck would have it fellow ALCL cancer mama Lisa whose daughter Annika has been a constant inspiration to us called me from the UK to talk it all out. Annika relapsed a few months ago, but is doing well back on Lorlatinib and Lisa had some suggestions for next steps in case we need a new plan. I don't believe in coincidences, just signs and help from God, so this was another perfectly timed shot of help and faith for me.

[Photo description: The Candlelighters Childhood Cancer Support Programs sign on their suite at the Canadian Tire Centre.]

Last night we went to the Imagine Dragons Concert at the Canadian Tire Centre in the Candlelighters Ottawa suite as their guests. We ended up having the entire suite to ourselves! What a luxury! Imagine Dragons have been on Ollie's Bye Bye Lymphoma playlist since about this time two years ago when he was having brain and spine radiation.  We'd been pretty excited to go for the last weeks and tried not to let this week's events put a damper on it. 

[Photo description: Mario and Ollie stand in the Candlelighters suite with the stadium beginning to fill behind them.]

We had a very sweet member of the Canadian Tire Centre's staff taking care of us and she told us that by day she was a grade 2 teacher in Barrhaven. She obviously understood what Candlighters does and asked how we were associated, so I told her Ollie's story and she was so sweet and touched by his story and then very kind to all of us, even bringing the kids each an ice cream bar at the end of the night. 

[Photo description: Ollie is wearing his new Imagine Dragons Concert t-shirt and bathed in the red lights from the concert while dancing in the Candlelighters suite.]

We wore masks when sitting down front as it's open there and apparently there were 10,000 people there last night! Even Abby who often asks when we can stop wearing masks everywhere commented that it would be crazy not to mask there. Thankfully we didn't interact with many people on the way in or out as we arrived early and left a little early as Ollie was getting tired son we didn't stay for the very end and encore as he'd already heard all of his favourites by then anyways. 

Ollie really enjoyed it and Abby was impressed with the experience as she'd never been to a concert before.  Not that she let on to us - but she hasn't taken her new outrageously expensive concert t-shirt off since she got home and I heard her talking to her friends about how cool it was. 😎 Mario enjoyed it and I was glad to do something "normal" with the kids without the bigger risk I'd expected, but I was worried about Ollie who was flushed (it was warm in there and so was I) and pretty tired despite the nap he'd taken earlier. He did get up and dance and sing for every one of his favourite songs, so that was a good sign that it was just normal long days and emotional week fatigue. 

[Photo description: Mario, Ollie, Dawn and Abby sitting on the sofa in the Candlelighters Suite at the Imagine Dragons Concert.]

Our plan is to see his CHEO team on Monday for his regular checkup and blood work and talk about a plan just in case we need one if the news isn't what we hope (with gratitude to Lisa again for some possible next steps recommended from her own experience). And after that we'll just keep putting one foot in front of the other, living our days as we have over the past year with faith guiding us and cautious hope continually moving us forward. 

Thankfully we also have his 6 month MRI, CT, x-rays and bone density scans booked on May 11th (delayed by a month thanks to COVID) so that will give us further clarity on his stability. And I talked to the lovely scheduling person Debbie in Dr. Dollin's office last week about Ollie's surgery victrectomy and laser eye surgery on his second eye and they hope to schedule it by late May (again delayed by COVID). His pressure is holding fine, but we see evidence of his cataracts becoming more prominent as his left eye now looks more grey than blue. The show and planning must go on despite anxiety and waiting for biopsy results.

We will get through this and promise to keep you posted. In the meantime we appreciate your positivity and prayers sent our way for speedy and good news. Be well and grateful for all of the blessings that you enjoy every day. We try so hard not to take ours for granted now that we understand how fast it can all change.

All I Want for Christmas is a COVID-19 Vaccine and a Victrectomy...

[Photo description: Ollie sits in his seat in the van resting his hand on Hope beside him when being picked up from school. The red seatbelt cover has a Medic Alert symbol on it and inside contains details on Ollie' s medical conditions in case of an accident.]

It's hard to believe that we are now less than two weeks away until Christmas again! Getting everyone here into the Christmas spirit has been a bit of an uphill battle again this year, but we've slowly gotten there. 

[Photo description: Ollie sits on the sofa beside a sleeping Hope while playing with a tactile Mini Mini-Golf game on the ottoman in front of him. 

As usual, Ollie was most like me, so was actually interested in celebrating the holidays and helped me to drag Abby and Mario into the spirit. We decorated the last weekend in November - earlier than we ever have. Mario thought I was crazy, but went along with it and tried to get Abby into it. She was reluctant. Digging deeper by talking about things revealed that everyone is now reminded somewhat about Ollie being diagnosed this time of year and having those first rounds of chemo in the weeks before, during and after the holidays. No matter how far away we get from active treatment, there are constant reminders of what we went through in those early days. 

[Photo description: Ollie wears an elf hat and Hope wears reindeer antlers while a roaring fire appears on the TV screen behind them.]

We talked about reclaiming Christmas and trying to think more about how grateful we are that we're all together and he's well instead. It hasn't been easy and there have been arguments and tears to get past this PTSD, but we're getting there. Abby and Ollie are now getting excited that Christmas is almost here as evidenced by them trying to guess what their gifts under the tree are. 

[Photo description: Ollie adds coloured bulbs to the ceramic Christmas tree that was my grandmother's as we decorated for the holidays.]

When he has his moments, Ollie has this incredible way of being able to talk about how he feels when he's feeling big angry or sad feelings and then to just recover quickly after hugging it out and appreciating the good moments that follow. Hope helps him a lot with this process. He calls her especially when he is sad after his anger has dissipated and he needs to move from sadness to acceptance to readiness to be happy again. He just hugs her and within moments he feels ready to face whatever the world throws at him next. As his mama my level of gratitude and love for this gorgeous and sweet-natured canine (who honestly seems to think she's human) knows no bounds. She spends most of her days very close to me at home. Mario laughs that I was the one who didn't want a dog before Ollie went blind and she is now super attached to me and I to her. 

[Photo description: Ollie hugs Hope while sitting on the back of the CNIB Christmas Float before the Carleton Place Christmas Parade on November 27, 2021.]

So it was our great pleasure to be invited to participate in the Carleton Place Christmas Parade with the CNIB Guide Dogs Program and show our gratitude for being part of something so life changing for us all. Ollie was so excited to be part of it and showed incredible patience while waiting for the parade to begin. Hope was so well-behaved despite all of the distractions, especially with so many other dogs around. 

We met several other volunteers who boarded Hope during her time at the CNIB Canine Training Centre. They were all overjoyed to see her and commented on how wonderful she looked, how well-behaved she was, and how well Ollie was doing with her. They are all incredibly warm and kind people who open their hearts and homes to help train guide dogs for blind and low vision people. It's incredibly hard for them to love these dogs and then let them go, but they do it selflessly to make lives like Ollie's better.

[Photo description: The CNIB float for the Carleton Place Christmas Parade is covered in Christmas lights and featured a blow up Snoopy riding a scooter and a decorated Christmas tree pulled by a yellow, white and black CNIB Guide Dogs van. Dawn, Ollie (in orange coat) and Hope are sitting on the float with the program lead of the CNIB Buddy Dog/Ambassador Dog Program, Buddy Dog duo Connor and June with mom Julie and other CNIB volunteers. CNIB Dog Trainers and Guide Dogs in training walked behind the float. Photo courtesy of Allison Noseworthy Warren]

The parade was incredibly well attended with approximately 5,000 people lining the streets. On the one hand this made me grateful to be on the float safely isolated from the masses, but on the other I felt so grateful for this little bit of normal for everyone. Pretty exciting for a 9 year old to be in a parade and we hope to be invited to do it again in future!

[Photo description: Ollie is assisted by Mario and Skateboarding Instructor Jordan as he does his first blind standing ride down a half pipe at The Yard.]

I haven't written that separate blog post about Ollie skateboarding yet, but he's making great progress and it's fun to watch him do something he loves so much and I love the respect that other kids at the skate park show him when they realize he's doing it blind.

[Photo description: Ollie and his skateboarding instructor Jordan are interviewed by Denise Fung of CBC Radio at The Yard.]

 CBC Radio taped an interview at The Yard with him and Jordan yesterday, so listen this week for him on Ottawa Morning! 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Last spring, Make-A-Wish Eastern Ontario asked if Ollie would be willing to be part of the 24 Days of Wishes. Each day in December leading up to Christmas, a Wish kid is featured on Ottawa's CTV News to encourage people to donate to help make Wishes come true for other critically ill children in 2022. 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Ollie's Door Day was December 10th and you can watch the CTV News segment on him here. We remain so thankful for the Wish that he was granted in March 2021 to have an epic playroom and he has literally used it EVERY day since then. It really is the Wish that keeps on giving and he helped the sponsor of his Wish, eQ Homes to make a video to encourage others to help them to Wish It Forward to help another deserving kid in 2022. They just posted today that they met their $10,000 goal to make this happen, so we continue to be grateful to eQ Homes and their supporters who have helped to inspire kids like Ollie with critical illnesses to keep going through all of the hard stuff to get their Wishes.

[Photo description: Ollie gets his first COVID-19 vaccine from a CHEO nurse while stuffie Llama Llama Blue Pajamas is hugged for courage. This red and white shirt reads, " Be a changeable - #sgeochangemaker - St. George Catholic School"] 

On November 28, 2021, Ollie was psyched to finally get his first COVID-19 vaccine at CHEO! Honestly when CHEO called me to schedule it I was teary and when he got it I breathed a deep breath of relief. It's not enough yet and he's scheduled to get his second in January and will get a third after that given his transplant makes him higher risk for COVID, but it is an incredible first step towards all of us feeling less anxiety about him being out in public, including school. Ollie felt no pain (my arm after my booster last week hurt for 4 days, but he says he felt nothing!) and aside from being a bit more tired for 24 hours and asking to go to bed early, he had no side effects. 

I have tried to explain to the naysayers online who cry that parents are "torturing" their children by vaccinating them with an "untested" vaccine that they have no idea what really torturing your child is like. That putting chemo, radiation and truly untested in children drugs into their little bodies to save their lives is torture for them and for you as the parent. And all are in the interest of saving their lives. Just like this COVID vaccine is for Ollie. That both of my very bright and aware children BEGGED to get this vaccine in the interest of protecting each other and trying to live a more normal, less scary life. That if my then 12 year old daughter could legally consent (and she was physically and mentally assessed to ensure that she was okay to consent) to give her stem cells to save her brother's life, she and others like her are very capable of deciding to get a vaccine.  

A few of Ollie's friends who were nervous about the vaccine or scared of needles told us that despite this they were going to get the vaccine anyways because they could be brave like Ollie. And then they sent us messages celebrating that they had done it! Again and again people help us and amaze us with their kindness. To-date in Ottawa 50% of eligible kids have been vaccinated in the first three weeks of vaccination clinics and we are thrilled to live in this community where people take care of each other. 

[Photo description: Ollie sits in an pathology exam chair in an exam room at the Eye Centre at The Ottawa Hospital - Riverside Campus waiting to be examined by Dr. Dollin]

On December 1st, Ollie had another appointment with his retina specialist, Dr. Dollin at The Ottawa Hospital at the Riverside Campus Eye Centre. First time ever for us at Riverside! Have to say, that we preferred it! Smaller hospital and less people at the clinic there as well as more modern facilities! Dr. Dollin verified that the pressure in his eyes is manageable with drops, but that ultimately we'd likely eventually have to do at least the lasering of his eyes to correct the pressure issues and stop unwanted blood vessels from growing and admitted that waiting to see if the blood from his vitreous detachment would dissipate on its own did not work. So the only way to clear out the blood pool and try to recover any of Ollie's peripheral vision in his right eye was to do the vitrectomy surgery. At my encouragement he and Dr. O'Connor at CHEO confirmed later that day that Ollie would have the surgery and to my surprise scheduled him for December 15th (tomorrow). 

He's actually having both surgeries (vitrectomy and lasering) on the right eye. It's just day surgery with the prep and recovery after taking longer than the 1 hour 45 minute surgery itself. He'll be sedated and they have promised they'll manage any pain he might have, but said generally there is more discomfort like a scratchy feeling than pain. Recovery is about 2 weeks, so it's good that we'd just planned a quiet Christmas with just us this year. Ollie is upbeat about the surgery and hopeful that it will allow him to recover a bit more vision. He knows better than anyone that there are no guarantees when it comes to medical procedures and the pursuit of wellness, but despite everything remains his hopeful, positive self and believes it will be worth it. We all feel confident, but would totally appreciate your prayers anyways that all goes well and is easy for Ollie. I'll try to at least write a short update when I can.

In the meantime, we hope that you are having a wonderful holiday season despite COVID-19 and the cases rising again. We all know too well now that while there is nothing like being together in person, there are many safe ways to stay connected to those we love whether near or far. Please get your COVID-19 booster when you are eligible to keep yourself as safe as possible and to help us to keep Ollie and other vulnerable people like him safer.