"Hyper"-charged Back to School and Childhood Cancer Awareness Month

[Photo Description: Ollie lies on a hospital gurney hugging CNIB Buddy Dog Hope in CHEO's Medical Day Unit (MDU) during his August bloodwork and checkup.]

It has been a busy 2 months since I last updated the blog in mid-August! I figured I'd better write an update as I am starting to get private messages from followers wondering if we're okay.

I expected to update before now, but a few minor developments (I'll elaborate later in this post) have kept me busier than expected and we had hoped to have had scans by now and be able to confirm if he was still in remission. Unfortunately we all got colds the past couple of weeks (many many COVID tests taken to be certain that is all it was for each of us in our turn) and had to postpone Ollie's original scan date last week until October 19th, so we don't have any news on that front yet and while we are at it will ask you to include Ollie in your prayers for the next week for clear scans again.

[Photo Description: Ollie proudly wears his white Kids Kicking Cancer Canada gi and new yellow orange belt in the living room while standing on an exercise mat with Hope at his feet after his virtual belt grading.]

Backtracking a bit, the end of August was busy with getting ready for back to school. Ollie was proud to get his yellow orange belt through Kids Kicking Cancer Canada! 

[Photo Description: Ollie, students and Senseis do pushups while wearing their gis and masks at an in-person class of Kids Kicking Cancer Canada - Ottawa Chapter, while CNIB Buddy Dog Hope lies beside Ollie's mat wedding her yellow CNIB vest.]

All summer Ollie has been attending Kids Kicking Cancer Canada in person at the Maplesoft Jones Centre/Ottawa Regional Cancer Foundation's facility. CNIB Buddy Dog Hope has gone with him and even helped to calm others in the class, so she's invited to all classes that Ollie wants to bring her to now! 

[Photo Description: Ollie sits beside Hope and Child Life Specialist Manon on a gurney in CHEO's Medical Day Unit (MDU) with one arm around Hope, while nurse Kerri gives Ollie the first dose of his last four live childhood re-vaccinations.]

Ollie also got his first dose of the re-vaccinations for the live vaccines (Measles, Mumps, Rubella and Varicella) at the end of August. Only one more set of these on October 31st and he will be fully re-vaccinated! That's 30 doses of childhood vaccines plus 3 COVID vaccines in the past 18 months! He was also told by his team that he could bring his Hope with him for this and any appointment at CHEO where she could be a support to him. As usual Hope was amazingly well-behaved and calmed Ollie like few others can. 

[Photo Description: Abby wears her backpack and stands on the front porch with feet apart and arms crossed on her high school orientation day. The sharing of this photo was authorised by Abby.]

September has been consumed by back to school and starting all of the lessons and activities again! Abby started high school at her special arts school and is settling in nicely. She is becoming more independent and responsible and has an active teenage social life these days, too. We're trying to give her as normal a first high school year as possible given how abnormal the last three years have been for her and all that she's sacrificed to keep her brother well.

[Photo Description: Ollie stands on the front porch smiling and giving two thumbs up, holding his mobility cane with his backpack at his feet on his fussy day of grade 5!]

Ollie started back to school in grade 5! He now wears a size 10.5 men's shoe already and is among the tallest in his grade 5/6 class already. This is evidence that his thyroid growth hormone has been working well (until recently, but we'll get to that a bit later). Kids who have had cancer often either have early onset puberty or do not enter it at all without the help of hormone therapy. His endocrinology team has said that as he's starting to move into puberty, they do not intend to slow it down since the growth is where they want him to be, even if a bit faster than he otherwise would experience it.

[Photo Description: Ollie sits at the dining room table reading his French homework in Braille.]

He's back with his amazing Vision Itinerant teacher Dawne and has a sweet new Educational Assistant (EA), as his awesome EA from last year did an accelerated pilot program this summer to become a teacher this fall. She will be missed, but we are grateful for all that she did for Ollie and know how lucky her new students are to have her. His English and French teachers this year are the incredible teachers that Abby had for grade 6 when Ollie was diagnosed. He also has a couple of subjects with the incredible and kind teachers who were his first visitors in hospital during round one of chemo. His gym teacher was Abby's, too, is his same as last year and was and is so committed to adapting sports for him. He came home telling me about capture the flag and how she had the kids on the other team all wear beeper boxes so that they couldn't sneak up on him and steal his flags because he can't see them. I remain so incredibly thankful for his entire educational support team and all that they do for our boy.

[Photo Description: Ollie stands in the schoolyard  on the first day of grade 5, holding his mobility cane and giving a thumbs up with his vision itinerant teacher, Dawne beside him. Photo shared with permission from Dawne.]

We'll focus a lot on the French Immersion side of the shop this year. Ollie remains behind in this subject area having missed two years of instruction thanks to his treatments and a lack of French instruction in his year in virtual school. Also, apparently blind and low vision kids typically don't do French Immersion (50% of the day in French) - they either do core French (1 period out of 4 in French per day) or are exempted from French altogether in their Independent Education Plan (IEP). 

[Photo Description: Ollie stands outside of the school on Terry Fox Run Day wearing his Fight Like A Kid sweatshirt with the Gold Childhood Cancer Awareness ribbon made by Littlepressco. He holds his mobility cane under his arm and a Terry Fox Run sticker in his hands that reads, "I'm not a quitter. I'm running for...Griffin, Lily and CHEO friends still fighting."]

Ollie was given the option to go down to core French, but was insistent he could do it, so I'm working with his amazing French, Resource and Vision Itinerant teachers to modify the curriculum to set him up for success until he is fully up to grade level in French. It is more challenging for a blind kid to learn French Braille, but he is determined and smart. Last year he fully caught up in two missed years in all other subjects as well as jumped 2 grade levels in Braille, too. All because we accommodated, supported and believed in him. So now we'll do the same in French. And he'll show everyone (as he always does) what resilience and perseverance can do. Ollie inspires me daily to do more than people expect I can.

[Photo Description: Ollie and Dawn pose in front of a Make-A-Wish Eastern Ontario banner at a recent Golf Tournament. Photo courtesy of Sharon Forbes, Make-A-Wish Eastern Ontario.]

That's part of why I do so much advocacy and fundraising for organizations that are important to us. To that end, September was Childhood Cancer Awareness Month, and a busy one it was! 

We started out filling in for another oncology family who was supposed to speak at a golf tournament being held for Make-A-Wish Eastern Ontario, but was admitted to hospital unexpectedly days before. Often cancer families are in this situation and we ourselves have experienced this in the past, too. Ollie and I drew the raffle tickets and spoke about Ollie's story and what his wish meant to him. Ollie caused a flurry of sales when he told the attendees that there were 200 tickets to be sold and they'd only bought half of that and another kid like him might not get their wish if they didn't buy more! 😆 He was honestly so charismatic and inspiring that the entire tournament was in love with him. 

[Photo Description:  A masked Ollie holds a CHEO Teddy Bear in the nursery in the CHEO Dream of a Lifetime Home for 2022 during the official media launch.]

The next week we got a last minute call from the CHEO Foundation asking if we'd fill in for the oncology family that was going to help launch the CHEO Dream of a Lifetime Home Lottery for them. Sadly this family had also been unexpectedly admitted to hospital with illness. Mario and Abby had school and work obligations, so Ollie and I represented. You can see the launch and our interview here. He was a bit tired and shy about the official launch part, but did amazing at the one on one interviews. You can read another account of the launch event with Ollie's interview here. Finally, I did an interview with Sam Laprade on her CFRA An Hour to Give session on the CHEO Dream Home. You can listen to my interview starting at the 33:58 mark.

[Photo Description: Ollie sits in the driver's seat of a golf cart decorated with gold balloons with Sensei Lyne sitting beside him and Dawn standing beside her at the 2nd Annual Kids Kicking Cancer Canada Ottawa Golf Tournament. Photo courtesy of Sensei Reesa.]

Finally, we were glad to be asked to be Ambassadors for the 2nd Annual Kids Kicking Cancer Canada's Ottawa Golf Tournament (no filling in for others this time). This time we got to spend the day in the beautiful fall weather, cruising around in a golf cart delivering food to volunteers, talking to golfers in the tournament and later delivered a testimonial as to the difference that the program has made in Ollie's life. 

[Photo Description: Dawn makes her eleventh blood donation wearing a mask at Canadian Blood Services in October 2022. Her milestone 10th was in July 2022.] 

In addition to all of this, I'm working  full-time, am on various committees and councils for pediatric cancer and blindness and continue to work on several cancer-related studies. It's a lot, but I feel so grateful to be well enough myself to do these things and to pay forward the incredible blessings that we've been given. As we move into the winter some of these commitments will be completed, lightening my load somewhat. 

[Photo Description: Ollie and Dawn are masked and sit on the sofa in the living room of the CHEO Dream of a Lifetime Lottery Home.]

One of my biggest mental loads still is, and likely always will be monitoring Ollie's health. To illustrate how important this remains, even though he is more than two years post transplant we had a little medical issue over the past 6 weeks, too. 

[Photo Description: Ollie has blood taken at CHEO for his thyroid tests in September 2022.]

In the first weeks back to school we started to see little changes in Ollie: 

- Being short-tempered; 

- Waking in the night each night (he hasn't done that regularly in about a year);

- Waking up at 5 am daily after waking in the night and not sleeping his usual 10 hours per night (getting about 7-8 hours per night maximum); 

- Falling asleep in French class in the afternoons and it being really hard to wake him;

- Sleeping 2-3 hours at midday on weekends (normally he insists on staying awake even when he's tired);

- Complete lack of appetite and is having to almost force food down his throat;

- He continued to lose significant weight (he'd lost 9 pounds in the month after stopping his miracle cancer inhibitor drug Lorlatinib, which was expected given other people had after stopping) rapidly;

- Unexplained constipation and diarrhea again when we'd finally gotten bowel movements settled over the past 6 months after 18 months of instability after transplant; 

- Nervousness and anxiety (he'd started getting stressed again about scratching, dropping or breaking things and ask us constantly if he had. He used to do this whenever he was really anxious, but we've worked on it with the child psychologist and in August and early September when he'd gone off of the Lorlatinib it had disappeared entirely, then suddenly came back 6 weeks later);

- Heat intolerance when he'd have his plantar warts lasered, even though he'd done the treatments for a year and never complained that it ever hurt; and

- Night sweats.

[Photo Description: A masked Ollie checks his Braille on the Perkins Brailler in the Braille Room at school. A small black lab stuffie wearing a CNIB vest sits beside him on the table. Photo courtesy of Dawne Smith-Appell] 

It was the meltdowns and falling asleep during the day that made little bells go off on my head in the third week of September. This was just after his school team started wondering if he really was unhappy in French Immersion and suggested we might need to take him out. I started thinking about when we'd seen these symptoms before. At first it was scary because many of them are also symptoms of cancer. But I breathed deep and thought harder and remembered that after transplant when we'd gotten home and started seeing outbursts, fatigue and many of the same symptoms, it was his thyroid causing issues. Then I started thinking about what could make his thyroid meds stop working properly and I remembered that when he'd gained a lot of weight on Lorlatinib after transplant, they'd needed to bump his synthetic thyroid hormone med up because they told me it had to be calibrated to his weight. He'd lost 18 pounds in 2 months, so I realized he was likely experiencing hyperthyroidism instead of the hypothyroidism that he started taking the med for. Essentially I was certain he was taking too much thyroid medication because of his weight loss and this hadn't been flagged as a concern by his team at our last checkup at CHEO in August, even though they'd commented on the rapid weight loss. 

I verified in his MyChart online that they hadn't measured his thyroid levels by checking his TSH and T4 levels in his bloodwork since April. So I sent messages to the endocrinology team and his oncology team to explain and request a blood test. When the nurse practitioner in endocrinology called me back, she confirmed that it sounded like his thyroid was now overactive and ordered the blood test. She also said we would check his cortisol levels at the same time to be sure they were okay. Our team in CHEO's Medical Day Unit was kind enough to squeeze us in on the Friday morning for the test to keep things easier for Ollie to have it in an environment he knew well versus going to the lab directly. Monday I got the results in MyChart before I got a call from the Endocrinologist. Cortisol levels were fine.  But he did have high T4, low TSH. Hyperthyroidism. The Endocrinologist called about an hour later to confirm it, to commend me for seeing it and asking for the blood test, and to tell me she'd send a new prescription to the pharmacy for us that he should start the next day. She said that it would take 4-6 weeks for things to level out on the new meds and if we were coming in for routine bloodwork at the end of October anyways, we'd also check his levels again to see if the levels were normal or we needed to adjust the dose again.

[Photo Description: Ollie wears a helmet and is being silly while riding his Berg peddle go kart at the Central Experimental Farm with both hands in the air.]

So I was able to go back to his team at school and confirm that it was his thyroid, not bad behaviour or boredom. And Ollie insisted he was going to continue in French Immersion even if we have to work harder this year to make up for the two missed years when he was sick. He says if he could catch up on everything else last year after two years away, he can catch up on French this year, even with thyroid issues. 

[Photo Description: Ollie and friends from his Beep Kickball with the Miracle League of Ottawa.The kids are outfield in the last game of the season that was kids against blindfolded parents. Of course the kids won!]

Despite these challenges this fall, my boy has also participated in the Terry Fox Run and made the Cross country running team. He didn't go to the meet, though, as it ended up being the same day as a special event day for the Blind Low Vision program and he attended that event instead, where I'm told he was a real leader and helped the little kids a lot! He's also finished his Beep Kickball season and returned to his skateboarding lessons at The Yard with instructor Jordan. He's even inspired another little friend with vision loss to start taking lessons just before him on Tuesdays with Jordan! 

[Photo Description: Ollie porches on the edge and gets ready to drop in on the bowl at skateboarding lessons at the The Yard. Instructor Jordan holds his hands for balance.]

Mario and I both continue to work from home, with him going into the office the odd weekend day to do server work for a few hours as needed. We are grateful for the flexibility that our employers allow us to work around Ollie's school drop off and pick up schedules, as well as his medical appointments. Having to figure out a one-to-one daycare situation for him as well this year would have been a huge challenge. There have already been a number of days where there has been a shortage of Educational Assistants at Ollie's school and two afternoons that I've had to keep him home for lack of support already. These are the same educational workers that the Ford government and the Education Minister Stephen Lecce are refusing to negotiate fairly with. The same ones that my son and special needs kids like him need to get an equitable education. 

So our work flexibility may be even more necessary in the weeks to come if the mediation fails and educational workers strike. We had so hoped that this year could be completely normal, but between educational worker issues, difficulty getting COVID vaccines that should have been available months ago and more COVID spread, and flu season happening earlier than normal, it looks like we're destined to have another year of disruptions. Still grateful to have these problems than those that we've been dealing with the past 3-years, but wouldn't it be nice not to have to keep adapting?!

[Photo Description: Mario describes a small pumpkin to Ollie and holds it so that Ollie can feel it at the pumpkin patch at Miller Farms.]

So as we cruise into this week, which marks our three year anniversary of landing at CHEO in pursuit of diagnosis, and our twice annual MRI and CT scans to see if he's still cancer free, we once again thank you for continuing to follow our little story. Shockingly we are nearing 400,000 views of this blog around the world in the almost 3 years I have been writing it! Once again, I humbly ask for your ongoing positivity and prayers for clear scans this week. We'll share a short blog post as soon as we have results.

In the meantime, be kind to each other and yourselves, and please don't take any of your blessings for granted. See below for Ollie's recent Thankful Friday inspiration in his class from the day they also did the Terry Fox Run at school. Let us all see the world as Ollie does despite all of the suffering he's endured in his young life.

[Photo Description: Ollie's brailled message for Thankful Friday contribution on Terry Fox Run Day. It reads, " I am grateful for life. I am grateful for friends. Everyday, I am grateful for those who survived." Photo courtesy of Leanne Endicott]

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.