Scan and Biopsy Results

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

It was a really long 3 weeks waiting for biopsy results, but in our usual way we found that keeping busy and letting go while letting God worry about it all is best. Thankfully we had plenty of distractions to keep us busy.

[Photo Description: Four of the senior grade classes and some of their parents attend the first in-person school mass at St. George's Parish since the pandemic began in March 2020.]

We've all prayed an awful lot the past few weeks and have heard from so many of you saying that you were praying with and for us, too. It means the world to us to have our incredible army still here sending us light and faith. As it happens we also recently had our first opportunity to actually set foot in our parish for the first time since Abby's confirmation in February 2020. 

Just after Easter and the week after his biopsy, we got a message at home saying that Ollie's was one of four classes attending mass in person and parents of those classes were welcome to come or watch online with the rest of the school. Given Ollie's osteoporosis in his back and hip makes it too hard for him to walk all the way (it's 1.4 km each way from the school and back), his Vision Itinerant teacher had me drive him and met us there. Most students were still masked, all teachers were still masked and Ollie never takes his off, so we felt relatively comfortable doing this. 

[Photo Description: Ollie is in the grey jacket in front of his Vision Itinerant teacher and sitting with his classmates and dear friends during his school's mass.] 

It was both a joy and pretty emotional for me to be back given the last time he had just relapsed in his brain and our journey stretched further ahead of us than behind us like now. Ollie was very reverent and asked to stay and pray a bit extra at the end. I knew he was praying that he was still well and for so many of our CHEO friends who are still fighting. When I drove him back to school he seemed upset and upon further discussion I learned that he'd felt left out that he couldn't yet get communion like his friends. He did his Reconciliation recently, but we're still prepping for First Communion and hope to schedule it before the end of the school year. Yet another reminder of how much he's missed these past 2.5 years, but we're almost caught up!

[Photo Description: Ollie has a blast using Nurse Julie's scanner during his routine CHEO oncology appointment for bloodwork and check up. Julie is incredible with the kids and was wearing a Batman shirt with cape. She laughingly said it was great to work in a place where any day is dress up day!]

We had his routine visit with CHEO Oncology the following Monday. Bloodwork looked good other than slightly higher levels for his liver function (not super concerning and likely attributable to a change in the disagree of his Lorlatinib to 75 mg a few weeks before) and Dr. Abbott looked at the remaining bumps and the stitches from his biopsy and commented that she could see why I had been concerned and felt it was good that we biopsied. She said she would push for results sooner than the 2-3 weeks dermatology had quoted, but knew that all departments across hospital were short-staffed due to COVID.

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

Later that week I went with my "blood buddy" Marie-France to make my 9th blood donation at Canadian Blood Services. It is our ritual now that every 84 days we give blood in Ollie's honour to pay it forward to other families trying to survive what we have. Each and every time I feel grateful to every single selfless person who gave to save my child and know that mine is saving someone's child, too. In just a few weeks I'll pass two milestones...my tenth donation and two solid years of donating every time I have been able (my hemoglobin was too low one time, but otherwise I have given every 84 days). I started when we were waiting for Ollie to get back into remission and I knew that the pandemic was causing dangerously low levels of donations. They told me before his transplant that they couldn't guarantee that there would be blood available if he needed it and I told them just to hook me up and give all of mine to him. I knew they wouldn't do that for real, so I decided to start getting it into the blood bank myself and to try to get more people to help me. 

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

Given so many people in this province have been sick with COVID in recent months and not donating, there is once again a 25% shortage in the reserve of blood. If you are able or have never tried it but are willing, I encourage you to donate. It's so easy, takes less than an hour and honestly there are so many like Ollie whose lives depend on it being there when they need it. You can even join our team, "Donate for Ollie and Abby" through the "Partners" section of the Give Blood app or when you are online scheduling your donation. 

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

Ollie enjoyed the recent super warm weather by helping mama wash the van at a DIY car wash. He'd never done it sighted before he went blind and was so excited to hold the pressure washer and feel its power. The entire time he yelled, "Woohoo!" and laughed his head off. Worst actual wash van ever had, but best time doing it!

[Photo Description: Ollie sits on the deck at a table playing Tech Deck finger skateboarding.]

He's also gotten out more with the nice weather, but we are always careful to diligently use sunscreen, have him wear a hat and sit in the shade whenever possible as having had chemo, radiation and a transplant he is more susceptible to getting skin cancer and sadly he also has a Vedic pre-disposition to it as it runs in my family, too. In fact recently I had a sun spot removed by a GP Specialist in Dermatology just in case. After all of this you are so much more aware of every little unusual mark on your body and want to be diligent to get it checked early. 

[Photo Description: Abby's birthday donuts from Suzy Q's that read Happy Birthday.]

Abby's 14th birthday happened recently. Now that she is older they don't really do "parties", but simply hang out, marking the day with simple-gifts and lots of candy it seems. She was happy with that, so while I mourn the loss of her last real years of kid parties, she had a lovely day and was satisfied. 

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

Abby's birthday fell on Mother's Day this year as it often does, so she and I went for mother daughter pedicures to mark the social day for both of us.

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

Ollie's scans went well, but it was a long day at CHEO from 9 am arrival to begin driving the contrast and appointments all day until 5 pm. Fighting cancer even when in remission is definitely way harder than any job I've ever done. 

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

The hardest part of the day for him ended up being the removal of his biopsy stitches. I had asked at the last minute if someone in the Medical Day Unit (MDU oncology clinic) could possible remove them as they were really bugging him and we didn't have an appointment to see dermatology to remove them until the following week which would be four weeks with them in and they should have been removed after two. Apparently they are using non-dissolving stitches due to supply issues, so one more side effect of COVID and further strain on our hardworking nurses. Kind nurses in the dialysis unit attached to MDU made time to do this for him. Unfortunately it was very stressful and apparently painful for him as the stitches were pretty entrenched by then. With lots of Kids Kicking Cancer power breathing and mama coaching him, he got through it, but there were a lot of tears from a kid who's pretty tough. 

[Photo Description: Ollie lying on the CT bed with his arms reading on a wedge above his head and his hands holding a small stuffed koala bear given to him during treatment by his friends Henry and Dylan. The IV with a coiled cord to the contrast to be injected is in his right arm.]

Although he doesn't like the contrast he's now a complete pro at both drinking the contrast and the injected kind, so had no problem with the insertion of his IV nor drinking a cup of contrast every 30 minutes for 3 hours! 

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

Before scans and while drinking contrast we had scheduled an in person visit with his child psychologist in MDU and it was a pleasure to finally meet her in person after 10 months of seeing her exclusively online. 

The rest of the time we hung out in MDU's playroom doing crafts with wicki sticks and visiting with MDU staff who happened by. One child life specialist came over to say help and reminded us that she had been a student doing a placement at CHEO in oncology when Ollie was first diagnosed and now works there! She was so pleased to see that he was doing well. Unbelievable that it's now been 2 and a half years since this all began! 

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

Ollie missed one week or skateboarding due to the biopsy, but was insistent he was ready to go back the second week. He's progressed so much this year that it's amazing. To see some videos, go check out his Instagram account (cnib_ollies_hope)! Also our episode of AMI-TV's "We Are One" telling Ollie's story and how we all adapted to his blindness airs June 2nd at 8:30 pm. You'll see Ollie starting his skateboarding last fall and be able to compare how he's progressed! Here is the trailer. 

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

Ollie and Hope are also participating in the CNIB Pup Crawl again this year in memory of his friend Mason's Buddy Dog Queenie who became ill this year and had to unfortunately cross the rainbow bridge long before her time. 

In other developments, our old stove died and was going to cost almost as much as a new one to repair, so we had to get a new one. This is also part of Ollie's story now because we took the opportunity to research and buy a me LG SMART range. This is so that in future as Ollie agrees he will be able to use the active himself because the oven is voice activated with Google Home or Amazon Alexa and you can run it from your SMART phone which one day he'll also have. Since a stove lasts 10-15 years it made sense for us to do this for him to ensure accessibility. Just one more example of what we are learning about how to help him have an accessible life.

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

In other exciting news, two sweet Algonquin College Therapeutic Recreation students have written a book based on Ollie's story with cameos of other actual CHEO oncology patients, too. It was their end of the year project and they decided to self publish the book and give all proceeds to Candlighters Childhood Cancer Support Programs. You can pre-order yours here on Sam's Therapeutic Recreation website! 

The story is about Ollie who loves astronomy (creative license taken here so the story arc works better), gets cancer and loses his vision, learns through a therapeutic recreation specialist in hospital that he can still enjoy stars because each has a unique sound, then meets another boy at hospital who used to love skateboarding, but is now wheelchair bound because of his cancer. The boys trade telescope for skateboard so each can learn a new passion that they can still enjoy thanks to accessibility options. Hope makes a cameo in the book (and is on the cover), as does a brave CHEO kid named Sophia who is now a star in the heavens. This book is so positive and deals with cancer effects and death in the most beautiful ways. We are grateful to Sam (whom we met through the Snow Angels for CHEO Campaign this year) and Kaitlyn for their interest in Ollie's story, for making the kids in the story the brave, unstoppable heroes that they really are and for their generosity in donating all proceeds to help other kids like them who are still fighting. 

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

Two days after Ollie's scans our amazing oncologist Dr. Lesleigh Abbott called me to report on the scans. I was in the car running errands and as I held my breath she began with, "He's stable with no evidence of disease." Huge breath released. She's so used to this that she even waited for me to breathe before continuing. How difficult her job is when she has to deliver the bad news! I've been there with her and was so grateful for her compassion then, too. 

She also configured that she'd talked to dermatology and pathology about the biopsy results and they were certain that it was NOT any form of cancer or infectious disease. She did say they were still running a few tests to see if they could pinpoint what the spots actually are and they would follow up with us.

She then explained that what minor change there was in his scans just confirmed that they are now identifying his hip deterioration as Avascular Necrosis (AVN), which means that bone tissue is dying due to lack of blood flow. There are various treatments for this and it's not much worse, but we'll know more when we see the bone specialist in June. Also, they can see that his left eye that is still awaiting surgery thanks to the COVID backlog is experiencing more bleeding. So we've sent that off to his opthamalogist and I verified this week that it's been sent to his Retina specialist and next week I begin being more of the "squeaky wheel" to push for the surgery like I did before Christmas for the first. Otherwise all stable in his scans. Praise God for prayers answers once again and our incredible gratitude to all of you who sent us prayers and positivity! We are infinitely blessed.

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

Yesterday we were back at CHEO for bone density scans and xrays for the bone specialist and endocrinologist to take a closer look at in the coming weeks. 

We also had an appointment with Dermatology to follow up on their biopsy findings. They are fairly certain that the spots are leiomyoma.

"A leiomyoma, also known as a fibroid, is a benign smooth muscle tumor that very rarely becomes cancer (0.1%)."

They can be found in various places inside the body, but also on skin. They can be itchy and painful or not (his are not). If not itchy or painful they suggest not taking medication and just monitoring as it can lead to kidney disease. 

There is the genetic kind and random kind (just like cancer) and they'll do a blood test to determine if he had the genetic kind or not. They say it will be monitored through our oncology team from now on. They did say that they've checked all of the meds and treatments in his chart against it to see if there are any known causes, but came up with nothing. I inquired if there might be a correlation between it and his thinning skin in those areas thanks to prolonged use of Dexamethasone because of his relapses. They said they would check.

So just one more thing to monitor. Maybe related to the cancer and maybe not. Grateful it's not something worse, but sure wish results were always more definitive. 

Overall our results are great so we are thrilled and grateful and looking forward to the next steps. We'll share info from the bone specialist next month and tell you how we plan to celebrate his second re-birthday/anniversary of his transplant/second hero day for Abby. Until then, count your blessings, donate blood if you can and be well!

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.

COVID Club

[Photo description: A rapid antigen test shows two lines revealed, confirming that Mario was positive for COVID-19 the Wednesday after March Break.]

COVID-19 POSITIVE. All of us (started with 1 and eventually all 4). 

That's what we've been up to for the past 2 weeks. I'll reassure you all upfront that we're ALL okay. Especially Ollie.

On the Tuesday after March Break Mario came down with cold-like symptoms while the kids were at school, so I demanded he put on a mask and go to the basement immediately and stay there (he thought I was joking, but I assured him I was very serious). I set about ensuring that he had one of our largest HEPA air purifiers down there as well as linens, masks, Lysol wipes and the mini fridge supplied with drinks to keep him hydrated. Thanks to Ollie's post transplant period where we took no chances and sought to keep all bacteria and viruses away from him we have a large HEPA in every common area in every floor of the house and clubhouse and a small one in each of the bedrooms for a total of 7! We also always have a significant supply of Lysol wipes, masks, sanitizing spray, hand sanitizer, cold and flu meds and supplies, and many thermometers as well as a pulse oximeter to measure oxygen levels. Sadly we've had to be ready at home for any and all medical issues for two years, but happily haven't needed the COVID-specific supplies before now. 

[Photo description: A screen capture of the Ottawa Wastewater Meter's COVID-19 graph showing the dramatic increase in COVID over the past 3 weeks.] 

As I last reported in this blog, Ollie got his third COVID vaccine the Wednesday of March Break, so that gave us some reassurance, but on Wednesday when Mario tested positive for COVID, I called Ollie's team at CHEO and tried not to panic as I left a message for Nurse Julie on the post transplant team to relay to Dr. Abbott. I explained the situation and asked her to call me back with any advice and to confirm if there were any anti-viral drugs or immune system boosters that were approved for children (I was pretty sure there was not). 

[Photo description: A graphic showing Neutrophils, Monocytes, Eosinophils, Lymphocytes and Carolyn is and their roles in the body's immune system. Copyright of the Cleveland Clinic.]

Julie called me back quickly and confirmed that there were no approved drugs or treatments for COVID for kids in Canada. Since only 4 cancer drugs specifically for kids have been developed and approved in the past 30 years, it did not surprise me that we had no options for our immuno-compromised kids. Sad that no COVID drugs available to adults have been adapted for kids yet, but considering we don't even have vaccines for kids under 5, again not a surprise. She did say that she was consulting with the CHEO pharmacy and oncology teams on his specific situation and would call me back later that afternoon with any further information. 

Thankfully they were well-familiar with his case after two constant years of following him and she quickly called me back. They had verified that the cancer inhibitor drug that he is on (Lorlatinib) is normally an immune system suppressant, but noted that since he's been on it constantly for 20 months now and his bloodwork (especially his lymphocytes which help fight viruses and make antibodies) has been stable, they felt he was strong enough and much less likely than the average immuno-compromised person to have serious illness from COVID. They did warn us though that immuno-compromised people can have symptoms hide or linger for longer, so he'd have to isolate and stay home at least 10 days or until he had no symptoms and a negative COVID test.

[Photo description: A graph of Ollie's lymphocytes since his Nov. 2019 diagnosis.]

Prior to treatment his lymphocytes were at the bottom of what would be considered normal. This explains why he seemed to get every bug possible when Abby was able to avoid most of them. During cancer treatment and stem cell transplant they were below the normal low and this is what makes things dangerous for immuno-compromised people - their inability to fight off common bacteria and viruses.

Thankfully since he was a year post transplant he's been in the coveted normal high range (the best place to be for fighting viruses). Honestly I've never looked at the chart like this before for context and I wish that doctors would do this risk analysis before the onset of COVID symptoms for all immuno-compromised people. Not that this would be a guarantee that he wouldn't have Long COVID, and indeed we recognize how incredibly lucky (blessed really) we are that our immuno-compromised warrior sailed through COVID easily. 

[Photo description: Dawn wears a KN95 mask until all family members tested positive for COVID-19.]

So when Ollie had a dry cough on Friday morning 3 days after Mario's symptoms began, I was scared, but felt comforted by the opinion of his oncology team. I had prayed all week that if he had to get it (if any or all of us got it really) it would be easy for him, have no long term side effects and help to finally allow us to let go of another significant fear. I kept him home (he and Abby had continued to go to school although Mario had symptoms, but were following the rules and also continued to mask despite the mask mandates being dropped earlier in the week) and immediately alerted his teachers that he was ill, apologizing and hoping that they would be okay. Both members of his one-on-one vision itinerant team told me not to worry because so far they were testing negative and had continued to wear their N95s around him all week (just as he continued to wear his), so they felt that the likelihood of them getting it from him was low. I am relieved to report that they look clear 10 days after their last exposure to Ollie before symptoms appeared! Masks DO work when they are well-fitted N95s and KN95s and worn constantly, especially indoors (although Ollie had continued to wear his outdoors, too at school to keep himself and others safe).

[Photo description: A package of Lysol wipes, disinfectant spray and a KN95 mask.]

On Saturday morning Ollie was (predictably) COVID positive. 😔 At that point I told Mario that they might as well isolate together so I could attempt to sanitize as much as possible and get some things done as it looked like it was likely inevitable that I'd get it, too and may not feel up to doing the day to day things that are necessary to keep our family going. Ollie was feeling pretty giddy on Saturday about not being really sick after so much stressing about it for two years. He jokingly said he and dad were starting a COVID Club and Abby and I could soon qualify for membership. At the time I was not amused, but looking back at him joking and singing and dancing through it all, I'm struck by what a relief it was to all of us that he got it, and simply kicked it's butt like he did lymphoma and stem cell transplant. He is a complete medical and spiritual wonder!

So leaving him in the clubhouse with Mario happily building Lego, I frantically did things like order groceries, do the mountain of laundry, ensure we had sourced enough Rapid Antigen Tests to last us until we were out of isolation, ordered more masks as we were running low on Ollie's preferred KN95, etc. Don't even get me started on the monthly cost of KN95s for all of us to have multiples everyday! It's like going back to paying for disposable diapers again! 

And yet, I know how privileged we are that we can still afford this even as I've been on reduced salary for two years. And to that end, I haven't actually shared that I am now on week 4 of a gradual return to work part-time time, slowly moving towards full time over the next two months. That certainly added to my stress as well since I knew Mario and I would have to juggle Ollie while he was home for a minimum of 10 days with COVID so that each of us could still get our work hours in. Thankfully as always, both of our employers were very flexible and understanding. 

[Photo description: A large LEVOIT HEPA air filter in each of the common areas like the living room/dining room, basement TV room and in the kids clubhouse spaces.]

Mario's virus had progressed through the week to sneezing, congestion, cough, runny nose. By Day 5 he was mostly clear, with just a slight runny nose persisting. Naturally that was Saturday night, and by then both Abby and I had scratchy throats. Sunday she and I tested positive. She had the dry scratchy throat, sneezing and a runny nose for 4 days and then it disappeared and she was symptom free, but still positive until the following Sunday - 8 days after symptoms appeared. Mario's took 9 days to be negative, Ollie's 7 (noting that again it could be hiding so we kept him home the full 10 days) and mine was 9. So this idea of isolating for 5 days is ridiculous. We know there are many running around unknowingly infecting others because they isolate for 5 days and go back to public life. Some apparently are even unaware that after having it you're required to mask in public for a further 10 days after your isolation of at least 5 days! 

[Photo description: A compact LEVOIT HEPA air filter in each of the the bedrooms.]

To us it doesn't matter as we'll be wearing masks for the next weeks anyways in hope we can get past this without catching it again. And YES you can catch it again as we know people who have 3 and 5 weeks after the first time - each time we'd have to isolate for 10 days from onset of symptoms with Ollie, so this is not really making us want to take off the masks entirely yet. Plus, we now have so many little immuno-compromised friends from CHEO and would be mortified if we brought something in to them when we have to go for bloodwork, checkups and 6 month scans over the next month.

[Photo description: Ollie going to bed in his clubhouse while hugging his Hope on day 2 of COVID symptoms.]

I had confirmed with his oncology team that he had been COVID positive and let them know how it went. They were so glad to hear that it had been easy for him and the vaccines and his immune system worked fantastically well. At my request they moved his 6 month scans from April 13 to May 11 as I have heard from many oncology families online in support groups that their loved one went for scans right after either having COVID or the vaccine and the scans lit up on their lymph nodes causing panic and uncertainty over whether it was the cancer back or just COVID. So we want to avoid that stress entirely, especially as Ollie had BOTH the vaccine and the virus in a 3 week period. 

[Photo description: Ollie writing a story on his Brailler about us all having COVID.]

The few friends we did tell were as always wonderful to us. Checking on us regularly and offering to get anything we need, bring food, etc. Honestly people have already been so overwhelmingly incredible to us, that we need nothing more! We felt bad when other friends that we would normally like to help out had COVID in recent weeks and months and we could do so little for them given our need to shelter Ollie. 

[Photo description: Delicious food dropped off by dear friends.]

Ollie's amazing Vision Itinerant teacher shifted years quickly again and from Tuesday to Friday last week taught Ollie English, Braille and Math online each morning.  We even squeezed in a "Tech Club" meeting online one afternoon for him where he and two of his buddies from the Vision Itinerant program met with Miss Meghan who is their tech specialist teacher who helps them all to learn how to use the accessible features on their Ipads. 

[Photo description: Ollie attends online classes this week from home. Here he is in Tech Club.]

Abby did asynchronous learning this past week and her weekly meeting with her tutor enabled her to get caught up on anything she missed or was uncertain about. Overall she missed her friends, but she was pretty good all week and I could tell she was relieved that she had not been the one to give COVID to Ollie. I know it's been a huge fear of hers, but didn't really realize how much it has affected her until we got COVID. We've all gotten more hugs from her in the past week since we were all positive than we have in the past year. I think she was so terribly afraid of getting it and passing it on to one of us and getting him sick that she actually withdrew from physical affection (uncertain whether knowingly or sub-consciously, but either way heartbreaking) to keep us all safe. We still have a lot of work to do to help our kids feel loved and safe again.

[Photo description: Two positive COVID tests - Abby's on the left with a faint second line still and Dawn's on the right with very evident second line - on Day 7 for both since the onset of symptoms.]

So here are the things I've learned about COVID (in Ontario anyways) over the past few weeks:

1. Isolating for 10 days is what is really needed and 5 will do little but give people a false sense of security while the go around likely infecting others.

2. People are either perpetually confused about the rules or just don't care to follow them anymore. 

3. Masking after having COVID for the 10 days is essential to protect others from getting it as you can be contagious for up to 10 days after onset of symptoms.

4. Many people went away internationally for March Break  and did not mask for the 14 days after, as is the law federally. I think this is ignorance, not defiance, but am certain it is contributing to higher numbers. 

5. Although we didn't go out of the country, we did keep the masks on and clearly have prevented further spread of the virus when we unknowingly had it and were not yet symptomatic. Masks work. 

6. A family of four will need at least 7-10 days worth of RAT tests stockpiled to test regularly. That's 28-40 tests or 6-8 kits of 5 tests each. Thankfully we had 8 boxes and still have about 9 tests left, so now I'll go out for the next week or two and stockpile again. The government should simply have provided every family or individual with this from the start. Picking up one a day whenever you see them is nonsense!

7. Be prepared with enough food and supplies for at least a week of isolation. 

8.  While I hate the defeatist attitude that we're all going to get COVID, it's become painfully obvious that this is the Ontario government's strategy at this point...abandon all protection measures and let everyone get it (likely to see if we finally achieve the elusive herd immunity or maybe just to get people to accept that COVID will now be business as usual like any other virus). Sadly it does seem inevitable that we'll all get it the way things are going (and I say this as the perpetual glass half full girl).

9. Knowing that this is the case, be prepared by being fully boosted. It literally made COVID so easy for all of us including the one most at risk of serious illness. This includes boosters for adults, teens and get your kids who are eligible vaccinated, too. The number of kids hospitalized with COVID for the first Omicron wave was significantly higher than any previous wave even as they say the virus is "mild". Our experience is that it likely will be if your kid is vaccinated. Data still isn't in on whether there will now be more kids with long COVID, but it's a certainty that we'll have more waves, so best be prepared going forward.

10. There is no feeling like the gratitude you feel when your kid survives something no one was certain they would. We've now felt this a handful of times in the past two years. Please trust me that you NEVER want to be in the position of seriously having to pray that your child will cheat death and survive.

11. Science and God remains the most powerful combination around.

Another milestone reached, another fear overcome, another blessing received and celebrated. Now let's all do our best to get through this wave, being humane and continuing to protect the most vulnerable who may not be as lucky as we have been. 

Things to pack/take for hospital stays

I get asked a lot by new cancer families what they should pack/take to hospital for admissions so am sharing this suggested list. Some I've added to the bottom specifically for stem cell/bone marrow transplant (especially if you have to move far away from home for it and can drive there).

We had 3 bags that we always had at the ready:

1. Hospital Daypack - A backpack ready to grab at the door in case of emergency where we had to go to the hospital right away and for use during hospital outpatient visits. Our visits were often full day affairs and emergency visits often ended up meaning being admitted, so we always needed to have these at the ready for the patient. In this bag at a minimum we had:

- Favourite stuffie

- Change of clothes (that could also be pajamas so usually pajamas or sweatpants, t-shirt, sticks and change of underwear)

- 1-3 days dose of current meds and a bottle of Children's Tylenol in his preferred flavour (we have one med obtained under compassionate grounds that the hospital couldn't get, so always had to have some in case, the rest can generally be obtained at hospital, but never underestimate a last minute need for Atavan for anxiety, Ondansatron for nausea or even Morphine for pain and how long it might take for them to get a doctor to give these orders in hospital while you wait to be admitted or are having outpatient procedures)

 - Blanket (we bought one that is fleece and folds into itself to make a pillow which is great to leave in the hospital daypack for unexpected Emergency Department visits, scans, clinic days, etc.)

- Toys and distractions (Fidget toys; dice and a hospital kidney dish to play games; deck of cards/uno game; new container of playdoh or putty; pop it game; mini Bop It; Lego Minifigure blind bags; Tablet or old phone with charger to watch videos on with hospital Wifi, download audible books on, earphones, etc.)

- Hand sanitizer, extra masks, sanitizing wipes, large ziploc bags for soiled clothes, etc.

- Tegaderm dressings/tape to reinforce around edges of central line dressing if it started to peel off, etc. and a pair of medical scissors (they'll give you a pair and tape at hospital if you ask)

- Emla patches to numb injection site (or port if you have one) - easier for day trips than the cream

- Mio Water Flavouring (to put in the contrast that they have to drink for PET Scans - usually at the children's hospital for CTs they have various flavours, but at the adult hospital for PET Scans they only ever has pomegranate and it once made Ollie throw up. Ollie always preferred Strawberry Watermelon or Orange so we learned to take our own.)

- Refillable water bottle

- A few snacks and treats (granola bars, container of Shreddies or Cheerios, lollipops or ring pops as rewards or to help the meds go down, etc.) for child and parent as the ways are often long and not an Emergency Departments have vending machines or allow food to be ordered from food services while you wait for hours.

- Small incentive prize for doing hard things like being brave for pokes and scans (Ollie always wanted Beyblades, but pick your child's fave small toy)

- Vaseline (good for dry lips, sore bums, etc. but always use a clean medical glove so as not to contaminate. Hospital will generally give you an new travel size if needed.)

- Small hand sanitizer and extra medical masks (you'd be surprised at how often dispensers are empty at hospital)

- Blue throw up bags (ring on top to hold open like a bucket, but compact and disposable. We kept them handy in the cars, too)

- Extra PICC line cover (made of stretchy fabric or in a pinch cut the foot off a sock that the snug but not right on their arm over the central line)

[Photo description: Ollie sleeps in an exam room at the CHEO hospital under his folding fleece blanket while listening to his tablet and getting an infusion of IViG to boost his antibodies.]

2. Hospital Overnight Bag - for short stays of 1-4 days - always packed and preferably left in the trunk of the car, it generally included:

- Pajamas for the patient and caregiver

- Change of clothes for the patient and caregiver

- Slippers for patient and caregiver

- Toiletries for patient and caregiver for at least an overnight stay, but 2-3 days if you don't have a co-worker parent or co-caregiver who can bring up what you need if admitted for an infection for 3-4 days)

- A few snacks and bottles of water (late night emergency room visits = nothing open if your kid is starving)

- Note that I would usually either also have his daypack noted above with me or transfer the most important things from it (e.g. Stuffie, tablet, meds) into the overnight bag.

- Eye mask

[Photo description: Ollie sleeps in an Emergency Department exam room at the Hospital for Sick Kids in Toronto. We haven't bought the folding blanket/pillow yet and there was no pillow in this room so we had to fold up my coat for his head! Our overnight bag is sitting in a nearby chair. We waited that night for 10 hours for a hospital bed to become advisable to be admitted and no food could be ordered there, and I could not leave him to get food. Thank goodness I brought drinks and snacks!]

3. Hospital Food and Supplies Bag - for our planned admissions for chemo and transplant - this one was a big canvas bag from Land's End (see photo below) and in it we would have:

- Cozy blankets for the patient and caregiver for sleeping (hospital supplies, but nothing like comfort from home)

- Magic Bag (put in freezer or microwave to help with pain or discomfort)

- Meds for patient and caregiver (note that often meds for kids are in tablet form and hard for them to swallow at first until they learn, so worth considering getting your own supply of kid friendly versions. For example, Ollie took Melatonin, but the hospital certain was a mint flavoured tablet that he hated so we bought and took Berry gummies instead. Also, they had liquid Tylenol, but usually only grape flavour and Ollie only ever liked strawberry-banana so we always had at least two on hand)

- Emla patches or cream our Maxilene cream to numb injection site (or port if you have one) and Saran Wrap to hold cream in place  - apply 30 minutes before poke

- Snacks and drinks for the patient and caregiver (Juice boxes, Campbell's Soup At Hand, Lipton Cup of Soup, Soda Crackers, Granola bars, chocolate, anything individually packaged that didn't need refrigeration, cereal, etc. The hospital generally has a parent kitchen on each ward with fridge, microwave, kettle and often a Keurig machine. Some hospitals have mini-fridges in the inpatient rooms as well.)

- Keurig Coffee Pods, sugar, coffee whitener, stir sticks and/or milk or cream. Also a travel mug or two or disposable coffee cups and lids (dollar store).

- Swiss army/pocket knife (so many times you need scissors, a nail file, a knife, a can opener, etc. and they're hard to find in hospital!)

- Salt and Pepper (they always forget the salt with the meal tray and cancer patients crave salty! We bought a set of salt and pepper at the dollar store and left in hospital bag)

- Foods to help get oral medicines down (chocolate pudding cups; squeezee applesauce packages or other fruit flavours; if we knew we were being admitted and had a fridge in the room or access to the family kitchen with a fridge, yoghurt tubes; Lollipops or ring pops to help with the yucky aftertaste of drinking contrast for scans, etc.)

- Flushable wipes (for the countless times the patient will have diarrhea and may even use a bed pan or commode. The hospital will give you dry wipes that you can wet, but not convenient and not very soft on skin that can feel burned after days of diarrhea)

- Baby wipes - for hands, quick cleanups, etc.

- Small supply of napkins, disposable plates, cuts, utensils, ketchup packets (most hospitals have these in the family kitchens, but sometimes you can't or don't want to leave the room to get one)

- Plastic hangers (2-4) - hospital rooms often have closet cupboards, but rarely hangers, little space for storage and if it is jacket weather you need to put them somewhere! We learned to take some with us and bring them home are each time.

- PICC line rubber/waterproof cover for bathing (can usually buy online or at hospital pharmacy) or Glad Press and Seal to keep vegan line dry while bathing.

- Hand cream - all that hand washing and sanitizing makes for dry and cracked skin which can then bring infection into the hospital.

[Photo description: An extra large canvas bag with "Ollie" embroidered on the side that held all of our hospital admission foods and supplies.]

In addition for longer admissions we also packed:

4. Planned Longer Admission Suitcase - same as #2 above with enough clothes for the entire planned stay or at least half and arrange for a spouse, parent, friend to deliver a second set half way through the stay and take the dirty ones to wash. 

5. For Stem Cell Transplant and/or moving far away to do it/living in hospital for long periods):

- Mattress topper/camping mat or sleeping bag for the sleeper chairs that are notoriously uncomfortable (absolutely the case at Sick Kids Hospital in Toronto in the BMT unit) and something to wrap it up in during the day (I had a luggage strap and an extra large garbage bag and sick it behind the chair during the day)

- Clean or brand new indoor shoes or slippers for the room for the caregiver(s). Leave outside dirty ones in clean room or bagged up in the isolation room.

- A bunch of new/unopened fidget toys, activities, small Lego sets, books, mini Bop It, Bubble pop, travel games, etc. Must be something you can fully sanitize taking in or brand new (outside package wiped with Lysol wipes before you take them in) to avoid bacteria and germs.

- Things to decorate room - we took posters, pictures and cards from friends wishing Ollie well. An inspirational photo or poster also works. You're in that room 24/7 for weeks (maybe months) and want to be comforted/inspired to keep going.

- Box of kitchen garbage bags to double bag things you're bringing in from outside. Remove outside bag and discard before bringing into isolation room. Also good for hauling dirty clothes out for washing. 

- 2 or more identical stuffed animals (whatever is you child's fave) - trade out daily for a new clean one if possible to avoid bacteria. Also kids drop them in the floor and sometimes throw up on them.

- 4-6 Shoe box or slightly bigger size clear plastic containers (dollar store) labeled with your family name to store food items in kitchen cupboards, communal family kitchen fridge or in your room. 

- Small single use boxes of laundry detergent or laundry soap pods - sometimes you have to pop up to the Ronald McDonald House room to do a load of laundry and there isn't always staff to sell you soap! 

Generally we have over-planned, as we have learned how difficult it can be to source things while in hospital (especially during COVID when often visitors are not able to bring what you need). I also wrote an earlier blog post about things to buy for cancer patients that can give you ideas about what we needed.