The Brave Boy and Therapeutic Clowns at CHEO (plus Mario photobombing)

Sunday 27 March 2022

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.

Tuesday 22 March 2022

The Epic Masked Stem Cell Crusade - 2 Years Later

[Photo description: Ollie is on ice skates again for the first time since going blind in January 2020. He is wearing a hockey helmet with face mask and holding his white mobility cane with a Dakota tip on it.]

Almost two months have flown by since we last posted an update! And it seems fitting to post today on the two year anniversary of the day that we left for Toronto to start Ollie's stem cell journey that would begin really well (despite the pandemic's arrival at the same time) with Abby's donation on March 31st, take us on an unexpected detour just days later when he relapsed a second time and would eventually need brain and spine radiation and a brand new drug untested in children obtained under compassionate grounds when the first and approved "miracle drug" didn't work for him, and eventually lead us back to a successful transplant in July 2020 and an incredibly smooth recovery to-date. 

In fact today Ollie is +610 days since transplant and the stress of just trying to get him through all of this and past the first critical 100 days after transplant seems decades ago to my brain and yet like yesterday in my heart. Especially this week as we heard that another CHEO and Sick Kids transplant family lost their brave warrior after 10 years of battling and over a year of post transplant complications that his poor little body just couldn't overcome. Another child taken unfairly and too soon, and a poignant reminder of how blessed we have been. All of our sacrifices have been worth it to keep him and some sacrifice so much more and still don't get to keep their babies. Please pray for the family of Mackenzy who have sacrificed SO much, but are so grateful to have had the past 10 years with their angel before letting the Creator take him to paradise.

It also reinforces why we are continuing to be diligent and masking (at least for a while) even after the mask mandate was dropped in Ontario this week. We continue to evaluate our risks, mitigate them where we can, sacrifice where needed. I just can't remove all protections and hope for the best yet with all that we have experienced and seen. Despite all of this we still live full lives of joy and gratitude because we understand too well how close we've come to the complete devastation of losing our child. There but for the grace of God go I.

[Photo description: On the left is Ollie's now well-loved official hockey puck from the Canadian Blind Hockey Association, which is about 3 times the size of a normal puck, is made of metal and has metal balls that rattle. On the right is a normal sized puck for perspective.]

These past two months since we last updated have been healthy and filled with busy activities like ice skating, playing hockey, and trying cross-country skiing with Ollie's class to name but a few! The kids have been blessed to attend a school in an urban area with a huge green space nearby so that they get to enjoy it at school often. From skating at nearby Champlain Park to cross-country skiing on the nearby KichiSibi Trail, Ollie's teachers have taken full advantage of the beautiful winter and gotten them out regularly to enjoy it. 

[Photo description: Ollie plays hockey with school friends at Champlain Park during outdoor gym class. Since Ollie is still learning to skate again since going blind, he opted to wear ice picks on his boots to enable him to keep up with class mates as they played.]

Given I have been in my last months off on leave, I took the time to go and help with Ollie so that he could experience it all safely and I could learn how to better support him to do it all with his peers. I remain grateful to his teachers and educational assistants who always help us to find a way to ensure his safe inclusion in every activity. Having a bird's eye view on how he interacts with his peers and vice versa has also been tremendously comforting. I am so happy to report that his friends go out of their way to help him and include him in all things. The very first day he was on skates again, two of his closest buddies were never far from his side, encouraging him and praising him for how well he was doing, saying how much they knew it was so much harder now that he was blind and he was doing it anyways. I was in tears and sent messages of gratitude to each of the boys' parents to thank them for raising amazingly kind humans. 

[Photo description: Ollie learns to cross-country ski on the KichiSibi Trail with his class, while assisted by his Educational Assistant, Mrs. Taylor.]

I know from experience with Abby already that these years where he'll want me to come to field trips and special events with him are for a limited time only and will end too soon, so I am so grateful for this time with him. And for now as he gets used to doing everything blind and all of the firsts are happening, it comforts us both to do it together. 

Thankfully while we cautiously participated post-Omicron, Ollie was happy to continue wearing his mask even outdoors and we were able to do all of this with relatively low risk for Ollie. 

[Photo description: Abby gets her COVID-19 booster at the #Jabapalooza vaccine clinic for immuno-compromised families in early February 2022. Dr. Nili Kaplan-Myrth and her team has organized vacination clinics for the vulnerable across Ottawa since vaccines were first available and actually gave Abby her vaccine. It was an honour to meet her and Abby even allowed her to take and Tweet out this photo of her!]

Abby has been so much happier being back at school, although in the past two weeks as it was announced that vaccine mandates would be removed in schools, she was highly anxious about it. She wants to keep her brother safe, but also wants to be "normal" and doesn't want to be the only "alien" wearing one. Thankfully there were 14 kids in her class (of 28) today wearing them and ALL of her teachers did as well. We remain thankful for all of these people who are protecting themselves and others like Ollie. We totally get that others want to get back to "normal" and hope that someday soon that will really be possible for everyone and not just because our provincial premier is looking for votes in an election that will be called any day now.

[Photo description: Ollie does a snow angel in the park on a sunny day as friends hold a Childhood Cancer Awareness flag nearby.]

We've been pleased to support the 5th annual Snow Angels for CHEO (#sa4cheo) this year again (our second year involved) to raise needed funds for CHEO's Oncology clinic and ward. The money is still being tallied as the campaign is just ending now, but it looks like the best ever result so far with more than $12,000 raised (last year it raised $8,000)! 

[Photo description: CHEO Bear and Ollie dressed as Cookie Monster and wearing a mask on his face give thumbs up while CNIB Buddy Dog Hope in her CNIB yellow vest sits at their feet.]



[Photo description: Ollie does a snow angel in his Cookie Monster costume at CHEO.]

[Photo description: A peanut butter and banana sandwich with a dog biscuit sticking in the middle made by Ollie as Hope's birthday cake for her third birthday on February 28, 2022.]

In late February we celebrated Hope's third birthday and in early March we celebrated one year since her "Gotcha Day" when she came to us! She has been among our greatest blessings over the past year and the confidence she has helped to bring out in Ollie since then is evident everyday.


[Photo description: Hope lies on her bed with her new football chew toy from Ollie on her 3rd birthday, February 28, 2022. A birthday sign made by Ollie is stuck to the wall above her head.]

Hope will be donating blood again for the Canadian Animal Blood Bank on April 2nd at the CNIB Canine Centre. Her (and Ollie's) summer is also shaping up pretty great as she'll be at CNIB Lake Joe a couple of times with the whole family and with Ollie and all Ontario CNIB Buddy Dog duos! 

[Photo description: Ollie and friends sit in an arcade race car game at a recent birthday party.]

Ollie got invited to a dear friend's birthday party recently and had a blast at laser tag. Mom had to tag along to be his audio guide and eyes, but he had so much fun! After the party in the arcade (it was way quieter in there after the party as it was dinnertime for most so it had cleared out) his friends grabbed Ollie's arm and lead him around the games, explaining everything and helping him up into some of the games. I watched in awe as 9 and 10 year old boys took responsibility for his safety and helped him to just be one of the guys. 

[Photo description: Ollie and friends straddle a motorbike racing arcade game at a recent birthday party.]

As a parent of a special needs kid you fear so much that your child will be excluded or made to feel less somehow. Even though we have built him up over the past two years to feel that he is NOT broken and still a normal kid who just needs a little accommodation or modification to do the same things as the other kids, I've worried that this would not be enough and his tender heart would be hurt by those who don't understand. So grateful that my fears were for the most part unfounded and he and his friends have all adapted so well and normalized it all for themselves. Kids are incredible when we teach them to accept and adapt.

[Photo description: Ollie stands in the kitchen holding his last cane bought in August 2021 and his new cane that just arrived. The old cane was a custom red for Ironman and the new cane is a blue and red homage to Captain America. He has grown so much in the past 7 months that his new cane is 6" longer than his last!]

Ollie is growing rapidly both physically and intellectually. We just received his new cane. His old one was bought 7 months ago and was 44" and his new one is 50"! Some days I wonder if the radiation he's had from treatments have made him a mutant as his feet have also gotten huge and he is now wearing a MEN'S SIZE 9 shoe!!!

Intellectually he is doing fantastic at school and is completely caught up with his peers despite missing the better part of 2 years of full-time school. He also recently had a Braille reading assessment. At the beginning of the school year his Vision Itinerant did a benchmark assessment and found that he was reading Braille at about a grade 1 level. Not surprising as he'd been a late reader before cancer and had just finished grade 2 a bit behind the average in reading independently. Plus his spelling was behind from missing so much school over the past two years. The latest assessment showed that he is now reading Braille at a grade 4 level!!! So he's advanced 3 years worth of progress in 6 months. A powerful combination of determination and a great teacher have made all the difference and his dedicated vision itinerant teacher last year focusing on his Braille literacy so he'd know it inside and out this year gave him an incredible basis to quickly launch from this year!

[Photo description: Matt Bennett, Senior Director of Corporate Partnerships and Consumer Products for the Ottawa Sports and Entertainment Group that includes the Ottawa 67's and the Ottawa RedBlacks sits in the stands at a recent Ottawa 67's game to bring Ollie a new 67's jersey with his name on the back and his favourite number 7. Friends and our family look on.]

During March Break we were invited to attend an Ottawa 67's game and bring some friends. Matt Bennett had heard that the 67's jersey that they gave Ollie when he was relapsing in Toronto (when Ray Skaff from Gabriel Pizza brought us pizzas and presents like the jersey) was now way too small and he told me to bring Ollie and he'd have a new one ready for him! 

[Photo description: A bald and relapsing Ollie wearing his first Ottawa 67's jersey in April 2020 in Toronto on the left and Ollie today wearing his new 67's jersey and a Canadian Blood Services Hockey Gives Blood hat at the recent game on the right.]

 The 67's game was our first public event in 28 months since diagnosis and we figured we'd better get out before the mask mandate was dropped and so many would be out without them, putting Ollie at greater risk. 

[Photo description: Mario helps Ollie to put on his new 67's jersey. the back reads, "OLLIE" and has the number 7 on it, which is Ollie's favourite number and has actually been retired by the 67's in honour of two previous players.]


[Photo description: Ollie braces for his third COVID-19 vaccine at CHEO.]

Also during March Break, Ollie got his third COVID vaccine at CHEO. Because he's immuno-compromised, he needs three instead of two for the initial doses. Now we wait two weeks for it to be effective and pray that he has an antibody response similar to others with a healthy immune system as many with compromised immune systems have even less effectiveness. 

[Photo description: Ollie wears his One Year in Remission t-shirt at CHEO while holding his mobility cane and a stuffed dog that he got after his third COVID vaccine.]

We've also recently reduced his t-cell kinase inhibitor (TKI) drug Lorlatinib from 100 mg to 75 mg in hopes it will reduce the hunger, weight gain, and paranoia he's often experienced on it. Since stopping two weeks ago his appetite has gone down significantly, and he seems better able to cope with most of his anxiety. He has MRI Ave CT scans scheduled for April 13 as part of the twice annual scanning that we have put into his post-treatment plan/roadmap that Dr. Abbott and I have agreed to. Hopefully it will confirm that he remains in remission with no evidence of disease. The plan is still to take him off of the TKI in July after two years and that will also allow us to give him his final re-vaccines (he can't get the live ones - measles, mumps, rubella and varicella - until two years post transplant and he's off of the Lorlatinib). Then we'll know for sure if the transplant really was successful or if it was the Lorlatinib simply holding the lymphoma back. 

[Photo description: Ollie and Mario give thumbs up while Abby and Dawn stand beside them. All are wearing face masks and Medieval Times crowns.]

We also decided to go to Toronto for the last few days of March Break to "Take Back Toronto" so that the kids no longer associate it with illness and isolation after the 5 months we lived there during transplant. The kids were begging us to go somewhere and again, we knew it would be harder once the mask mandate was dropped. We deliberately chose a hotel far away from downtown in the north end of Toronto that was very quiet. 

It was a fast couple of days so we didn't really get to see more than one family of friends who supported us so much through cancer and moved to Toronto this school year. It was lovely to see them, though and as always they were super careful to keep us as safe as possible. We were so glad to see them and miss them a lot. 

[Photo description: Dawn and Abby about to eat dinner at Medieval Times are wearing crowns and Abby is hiding her face behind a light up unicorn sceptor.]

We did a bunch of shopping (Abby was SO happy) and had takeout from the few favourite restaurants only found in Toronto.

We went to one public event which was Medieval Times as we'd promised Ollie long ago before cancer and never made it there. We also figured big arena was better than small restaurant, picked a mid-afternoon seating to avoid big crowds, asked to sit in the accessibility section far away at the back to be away from most other people and wore our masks except while eating. The kids actually had a blast (even Ollie who didn't think he would and was initially bummed not to be able to see it) and we spent a small fortune on unicorn adaptors, light up swords, as well as wooden shields and swords. Considering how little these kids have been out in public the past two years and all of their entertainment has been online, this seemed a small price to pay to make the event as fun as possible! 

[Photo description: Ollie shows off his new Medieval Times Shield and sword in the hotel room in Toronto at the end of March Break 2022 while Mario photo bombs in the background with his tongue sticking out.]

And this week they were back to school after careful consideration given the removal of masking in Ontario schools and public places today. I did an interview with CBC Ottawa Morning today to talk about the unique position that immuno-compromised families like ours are in with this change. They also published a print article about it here. Tomorrow I'm doing another interview. Not trying to stop anyone from living their mask free life, simply raising awareness of what it's like for immuno-compromised families and why people need to be humane and kind and respect that not everyone is in a situation where they can simply get on with maskless life and accept the risk of COVID.

We will continue to wear our masks and mitigate our risks for the next few weeks as we wait for Ollie's third vaccine to become effective and to see what happens with COVID cases and the Ottawa Wastewater Meter to determine when it may be safe enough for our family to remove our masks, too. If cases rise suddenly like they did with the first Omicron variant (reports of hundreds of thousands of kids in England having the new variant and it multiplying three-fold in two weeks are just now coming out) we may be forced again to isolate, but we sincerely hope that this time the modelling gets it right and it will not be as bad as the first Omicron wave was.

[Photo description: Ollie kneels in the kitchen floor to give Hope a hug.]

In the meantime, please take care of yourselves, get boosted and get your kids their shots if they are eligible and not yet fully vaccinated. Ollie has now had 19 vaccines over the past year (3 COVID since December and 16 other childhood re-vaccines since February 2021). We can honestly tell you that science works and your children are more likely to avoid serious illness and death when vaccinated. I promise you that you never want to be in the position where you are sitting at your seriously ill child's bedside praying for their survival and wishing you'd done more to keep them well.

To those still masking to protect families like ours, I am as always so grateful for all that you do to help us keep our Ollie safe and well. To everyone, please be well and stay safe.

Keeping the Family Healthy During and Post Cancer

When Ollie was first diagnosed I had a terrible upper chest and sinus infection. Likely exacerbated from the stress of testing and diagnosis...