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.

Fighting the Bah Humbugs

Wow! December 1st already! The days have been so busy that I haven't had time to write anything in over a week. It feels foreign not to write now. Like part of Ollie's story is being omitted, but truthfully, he is doing so well and the story has become kind of routine for now.

 Other than routine bloodwork and check up at CHEO every second Monday, he's only had a pulmonary test last week. Ollie was super calm and sailed through it no problem. His breathing and lungs look normal and so much better than when we last did this at Sick Kids. He was relapsing the second time then before his first failed attempt at getting the stem cell transplant and he had major shortness of breath. So no permanent damage to his lungs now! Yay!

We're still eating a lot of Ollie's Pizza from Gabriel Pizza, only lately it's customized online to add pepperoni to it, too! If you are in Eastern Ontario and haven't tried it yet, there's still time and don't forget it helps Candlelighters Ottawa to help families like ours fight cancer.

There's still exciting moments like receiving an unexpected package from Louise from Brampton (Google her!) who has been so kind to Ollie and Abby as one of her many random acts of kindness in honour of the little innocents taken too soon at Sandy Hook. The package came at just the right time for Ollie who was feeling "glum" about Christmas this year. Even though he's well he knows we can't see family this Christmas because of COVID-19.  

We did start decorating for Christmas. Neither of the kids have been into it much this year. I'm really trying to bring the Christmas cheer, but so far it's a slog. Wish me luck!

Funny thing is last year at this time we were in hospital for 12 days for round 1 of chemo. AND Ollie landed back in hospital for 4 days just before Christmas with an infection, only getting home on December 23, but Christmas was still joyous because Gamma and Bumpa came. They helped us to bring some festive atmosphere and to squeeze whatever joy we could out of it even though cancer was still new for us. In an incredibly bizarre way, last year was one of our best Christmases because we took nothing for granted and simply tried to find joy in anything we could.

So we're slowly injecting Christmas. Like putting up my Grandma's tree from my childhood.

And setting up our usual artificial tree,  thank goodness as we wouldn't be allowed to have a real tree anyways with the need to keep bacteria, mould and mildew away from Ollie's still developing immune system. I am grateful right now that we have very few plants and most are cacti.

 

So our tree is up, but not decorated yet because I want the kids to do it with us and they're not feeling it yet. Maybe we'll each add one item to the tree each day and talk about the ornament's significance or why it brings joy until the tree is decorated...in the meantime, Chewbacca has claimed it.

This one cracks me up...still wearing the Halloween shirt and now grudgingly adding the elf hat...

The past week Ollie has also be practicing with his cane on the many mild days we've had. We learned a few things. First that the repair at the end of our street obstructs the lines Ollie and other blind people need to tell them they're getting close to the end of the sidewalk. Thankfully when I contacted our City Councillor about this, he and his office staff immediately agreed to get the City to fix this ASAP and to put up a solar-powered speed radar in hopes that will slow cars down on our stretch to make it safer for Ollie. We are grateful to Jeff Leiper and his team for their assistance in keeping our Ollie and all blind and low vision people in our neighborhood safer.

We also learned that to make the audio signals go at the traffic lights, you have to hold the button for 5 seconds. There is Braille on the button that tells you North-South or East-West directions. There's also often a big tactile arrow now to further assist blind and low vision people in knowing which button goes which way. Then there are different audio tones for North-South (Cukoo-Cukoo!) and East-West (Chirp! Chirp!)! Mind blown! I never thought to wonder why there seemed to be different tones!

Ollie's still working on becoming more independent. He can now use this

pouring device to pour his own drink and know when it's getting to the top! Once the liquid reaches the prongs on the inside of the glass it starts beeping and buzzing. It scared poor Ollie the first time and he spilled his milk! Second time was the charm, though and he's mastered it now.

With a little help from his vision itinerant teacher he just finished reading his first full Braille book on his own! My how far he's come for a kid who just started learning Braille this summer!

She also sent him a tactile ball with a tether he straps to his wrist and now he can play catch with me or toss his ball against the wall and easily find it again! He LOVES it. Laughed out loud in glee the entire time we first tried it.

And we commissioned our dear friend Sohail (who is a talented welder and metal fabricator) to make us some railings for the deck and front porch to make it easier for Ollie to go up and down confidently without assistance. This will be helpful when the epic accessible play room out back is ready (big reveal to come early in the new year!).

Abby is liking online learning a bit better now that they're doing more interactive things like science experiments (wish they teach them to clean the kitchen after!) and they're using online breakout groups and she's getting to know some of the kids in her class better. She currently has only two friends from her actual school in her virtual classroom.

And she's still helping Ollie to do karate and actually benefiting from it herself, too.

The last few days she just felt like dressing up, so she did and put all of us jeans and track pants wearing folks to shame.

Mario is super busy at work. Still working from home mostly with the odd day where he has to go in for a contractor to do work or to pick up or drop off a piece of equipment. His days are longer than normal, but I know he's trying to make up for the many days over the past year where he put in shorter days to come to hospital to see us or to be there for big procedures and tests. We are grateful for the flexibility of our employers and the fact that they never had an issue with us prioritizing our son's health over work. It's shocking to me that some employers would not be as understanding to an employee with a sick family member.

As for me, I'm good most days. Some days are great, like this one where we played in the snow completely joyously, without worry about Ollie's health. Others are overwhelming and hard. I've finally finished the paperwork and obtaining documents for my next EI claim and my LTD claim. Service Canada advised me to go for both at same time and decline one of I get both. Hopeful we get one as my 35 weeks of caregiver are now done and I am without income. Thankfully I also got our taxes done with the help of our terrific accountant, so the return from last year should help us bridge this period. We are grateful that we have not had to take on much debt to-date as a result of the generosity of people and support from charitable organisations. 

I also had an interview with the new chair of the parent advisory council for Hematology and Oncology at CHEO and the Director of Hematology and Oncology. They're looking for new members and I'm thrilled to be joining them. As it happens, we met the chair while inpatient on 4 North and she's currently at Sick Kids with her daughter who had a bone marrow transplant almost three weeks ago. She was so kind to me and told me that she'd been referred to our blog when she was looking for current info on BMT. She said she'd been afraid of BMT, but started reading and found it so helpful that she read the entire blog! She told me that she felt I was writing exactly how she felt and what she experienced with her daughter's journey and she was at least one person helped by what I wrote. I was in tears. As she said, we are bonded in the same club that none of us ever wanted to join. I got a message from her today that her daughter's counts are going up and she's engrafting! More happy tears! I have an overabundance of these lately.

Mentally we all have our moments. Break downs, outbursts, sensitivity, overreaction, unexplained sadness or depression, anger...they come at the most bizarre times, but thankfully we seem to be taking turns as opposed to all melting down together. LOL The therapy is helping and even Ollie seems to see the value in it. We bumped into our social worker last week at CHEO and when she asked how he was feeling, he told her angry and sad sometimes and maybe he should come and see her. She immediately said she would and asked me to set up a time. 

He's a different child emotionally than he was a year ago when he NEVER wanted to talk about his feelings and it was a revolving door of social workers, psychologists and psychiatrists trying to talk to him over the past year. This tells me he's going to be okay because he wants to be. He knows he'd rather be happy and the only way to get there is to get the bad feelings out. If only adults understood this as well as he is starting to.

I'll likely write more later this week to finally share what Abby's been up to with CBC. Stay tuned!

+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.