Last Donation Day of 2020!

Hi all!

A quick post to remind everyone that today is the last day of 2020 to donate to a charitable cause and get a tax receipt. A few of you amazing people have contacted me this week saying you'd like to make a donation in Ollie's honour and where do we want to send it. 

Here is a list if you happen to be a person who makes a final year-end donation and would like to help other cancer families like ours in future:

- Pediatric Oncology Group of Ontario (POGO) - these little known folks have been hugely helpful to us. Not only do they have an Interlink Nurse in each Children's hospital in Ontario to help cancer families with navigating EI, LTD, school for your sick kid, applying for grants and funding from other organizations, but they also offer stipends to help you pay for food when you're in hospital with your kid and money to help pay for accommodations when you have to travel far for treatment. They were a huge help financially when we were in Toronto for treatment. 

- Kids Kicking Cancer - I've raved about this martial arts program in this blog because they have been instrumental in helping Ollie get his strength and range of motion back since stem cell transplant. It's also helping him with discipline and focus. The senseis are incredibly kind and didn't hesitate to teach Ollie and Abby privately even though they'd never taught a bond child before. Ollie adores this program. It's also based out of London, Ontario, so close to my hometown.

- Make A Wish Canada - Make A Wish grants a wish to crucially ill kids so that they have something to look forward to. They are granting Ollie a wish in January 2021. He's changed his Wish from a trip due to COVID as we know traveling won't be possible this year between COVID and him needing all of his vaccinations again. Abby participated in the MAW Campout this summer and refused a bit of money for them. We'll reveal the big wish in January, but would like to send them a little more love as they have been terrific about granting his Wish despite the constraints of COVID.

- CHEO - No explanation really needed here. The Children's Hospital of Eastern Ontario and its team are phenomenal and not only diagnosed Ollie within 30 days, but started his treatment a week later and liaised constantly with Sick Kids when we were there for stem cell transplant. We cannot say enough about this amazing team. 

- Sick Kids Hospital - Again little explanation needed. The hospital in Toronto where Ollie was treated for relapse and stem cell transplant. A dedicated team of professionals doing some of the hardest work in childhood cancer treatment and research in Canada. 

- Candlelighters Ottawa - We've given them a lot of love this year thanks to help from the Ollie's Pizza from Gabriel Pizza because they deserve it. Small but mighty not-for-profit that gives sick kids Ipads to communicate with loved ones, pays for your monthly parking pass at hospital (normally $14/day to park!), send packages with books on cancer, gift cards for groceries and gas, runs therapy groups, scholarships for childhood cancer survivors, etc. 

- Katelyn Bedard Bone Marrow Association - A small but effective charity based out of Windsor, Ontario, these generous people sent us a cheque to help with expenses related to Ollie's Stem Cell Transplant in Toronto. They also sponsor scholarships and bone marrow transplant research.

- Phoebe Rose Rocks Foundation - these kind folks try to "make it okay" for families like ours who have to travel far away from home to get a stem cell transplant as their little angel did. They sent a lovely package of gift cards to help with the additional costs of being away for transplant. They also fund research like the Terry Fox PROFYLE study at CHEO that enabled us to have Ollie participate in genetic testing to be sure this is not something Abby needs to be concerned about in future. 

- Canadian National Institute for the Blind (CNIB) - From moment one when we needed help with Ollie's blindness, these folks were there. From referring us to other government services like Vision Loss Rehab Ontario and telling us about their many programs such as the Buddy Dog Program, they've shown us that so many resources exist to make life easier for blind and low vision people. Ollie is eagerly awaiting his Buddy Dog that we hope will be possible in 2021.

- Canadian Blood Services - Can't donate blood or don't qualify to be a potential donor for stem cells? You can still donate funds to Canadian Blood Services and help to bring blood products and stem cells to families like ours.

We are also grateful for cancer research being done in adult organizations, but wanted to give the love to those working with kids as only 4% of all dollars given to larger organizations like the Canadian Cancer Society go towards Childhood Cancer. 

As you can see, we have been helped by so many incredible organizations this year and are so grateful. Canada is a country that relies on charitable organizations to support the social safety network that we all can count on when needed. This year we have learned better than most the need for these charities. Please be generous if you are able. We never know when we'll need the help.

Present Time

"There's no time like the present and,

there's no present like time."

I feel like we're racing against lymphoma. Our CHEO oncology team called this morning and told us Sick Kids Hospital agrees that things look better than last time and Ollie needs that transplant NOW. They will confirm tomorrow after conferring with Princess Margaret Hospital (where we'll do the radiation), but want him in Toronto and ready to do his total body radiation starting Wednesday potentially. They don't want to take the chance that he'll relapse again. 

I knew it would happen fast, but this is warp speed compared to last time. It's good, just stressful to find a place to stay and prepare to pack up our life for 2-3 months in Toronto in only a few days. Thankfully I am an expert planner.

While we're all happy that he's in remission again and going to get the transplant finally, we are also scared. We've all had our moments today breaking down while we processed the monumental thing that is now going ahead so rapidly. This disease gives you no time to adjust before everything changes again. Late this afternoon we all went to Toys R Us for a curbside pickup (a little safe retail therapy for the kids) and to McD's for a drive through ice cream. Just being together driving was calming and centred us again. We fight as one and we win as one.

We are grateful for the gift of the last few months at home to recharge, especially June which has really been our summer together. Since Ollie and I are about to spend a lot of time inside a hospital room, I have to think God gave us the beautiful weather He did to ensure we didn't feel cheated out of an entire summer, too.

I am working with our Pediatric Oncology Group of Ontario (POGO) Interlink Nurse to see what options exist for accommodations this time as it appears Ronald McDonald House is open again, but were also looking at renting a condo again just in case. Thankfully we all get to be close to each other and in the same city over the next two months until we know what is happening with school for Abby in September.

Back to the subject of radiation, thankfully they don't need to do more brain radiation, but he'll have three days of total body radiation with two short sessions daily. They'll do the transplant within a few days of that. The fact that they can use his double lumen power PICC to do the transplant and won't need the Broviac central line put back in his chest is excellent news and makes me feel we made a great decision to take it out to make him more comfortable when we got back to Ottawa. 

Some scary news is that as soon as we have a solid date to start radiation, he has to stop the miracle drug Lorlatinib as apparently it in combination with transplant can put too much stress on organs and cause death. This means he'll have no treatment until he starts radiation. Evidently also the main reason that they want him there immediately to start radiation and hold the lymphoma back that way. 

We're not fearful of the radiation now that he did 13 sessions on his brain and came out the other side well. We do know that this time they'll make him aplastic which means they'll wipe out his entire immune system, his vaccinations and any ability to fight off infection. This is a nightmare anytime, never mind during a pandemic. Once his immune system is gone, he needs the transplant to survive. And we're not certain that Toronto going into Stage 2 of COVID-19 with some restrictions lifted actually makes us safer in any way. 

Thankfully Abby's frozen stem cells are waiting and if need be, she can donate more. For her graduation one of the gifts we gave her was a necklace and pendant. The pendant (another beautiful piece from Sonya Roe Jewellers in my hometown, beautifully chosen by my dearest friend) has her name on the front and on the back it reads, "2019-2020  Grad, SC Donor, Hero". We did this weeks ago before we even knew for sure he'd get her stem cells, but wanting to acknowledge this amazing gift in an extraordinary year. This will be the beautiful completion of her lifesaving gift. The best present she'll ever give any of us.

Speaking of presents...This is an even bigger week for our family as Friday our Ollie turns 8 years old! He was a gift when he was born and his remission and survival was the wish I made on my birthday 2 weeks ago, so he's the gift that keeps on giving.

Given COVID, we can't have a real party yet, but we know Ollie would appreciate your online wishes, cards, drive by honking and any little bit of attention you have time to send his way on Friday. He seriously needs NOTHING but a transplant (and maybe a pair of size 5 Crocs if anyone knows where I can find some!), and you've all given him so many beautiful gifts already! Little gestures would be lovely to make his day special. Sweet friends Henry, Dylan, Erin and Ben took time today to stop in for a quick pre-arranged socially distanced visit to celebrate his birthday and he was thrilled. 

This will truly be his last opportunity for any real interaction with friends before transplant, so while we need to be safe, we also want him to have all of the love and attention that the bravest of lymphoma warriors deserves before his biggest and hopefully last battle in this war. You've made him feel so loved and remembered these last 8 months and he's having a hard time with the idea of having to go back to stay in hospital to feel bad again for another 6-8 weeks. 

So we ready to go into battle and Ollie has added to his Arsenal (at least his NERF one) today thanks to early birthday money from family. While the NERF munitions won't really help us in this next big battle, if it makes him feel stronger and better prepared to fight, it's worth it.

Gifts to Give Families Battling Cancer

People are so kind and generous that I get asked constantly what people can do or buy for us. We've been overwhelmed by the giving, actually. So here are some suggestions of things to buy for a family with a kid with cancer (please note we do not need these things as we've already been given them). Many of these suggestions would likely be equally helpful to adults battling cancer:

- Medicine organizers: one big one for the patient and one smaller each for the family members for their vitamins and immuno-boosters

- Grocery staples or a gift card to stock their pantry or freezer

- All purpose tote for hospital with favourite snacks, drinks, etc. 

- Safety aids or gift certificate to purchase some (e.g. Shoppers Drug Mart Wellwise, Amazon, etc.)

- Gift cards: Grocery store gift cards, Tim Horton's, Starbucks, Restaurants with takeout, Indigo, Amazon, Shoppers Drug Mart or Rexall (for vitamins, supplies, mobile aids, etc.), Gas, Google Play (online movies, apps, games, books), Cineplex (online movies to rent or purchase), Uber Eats, Door Dash, Skip the Dishes, local favourite specialty shops (e.g. Merry Dairy), etc.

- Online subscriptions: Audible for books, Netflix, Prime, or anything they might be into. 

- Cook for them: Start a Meal Train or join one organized for them. When we were in hospital continuously for 2 months this was a Godsend for us all. We had no energy to cook and were mostly eating fast food at the hospital when we weren't being fed by friends and family. Freezable foods are best to ensure no waste.  

- Pajamas, robes, slippers for whole family: comfort is needed and for those that will be at the hospital often, these are helpful. Ask the family for sizes if needed or buy someplace easy

 to exchange.

- Sleep and relaxation aids: Sleep masks, melatonin, Magic Bag, essential oils, humidifier, etc.

- Gift cards for Kids clothing stores (Children's Place, Carter's, Old Navy, etc.): Ollie has gone up two sizes due to the steroids and we've had to unexpectedly buy a whole new wardrobe quickly. You also need things you didn't plan for like all of a sudden muscle shirts to accommodate PICC lines and such

- Toys, Games, Puzzles: Small, tactile toys and things that can be used to entertain in a hospital bed: Magnetic tiles for building, Lego sets, Lego Mini figure blind bags, Fidget spinners, Putty, Brain teaser puzzles, Mad Libs, Comics, Fart boxes and noise makers, mini versions of games (Rock 'Em Sock 'Em and Mini Battleship were faves with ours), etc. If you know the child's passion (e.g. Beyblades), contributing to their collection is totally appreciated!

-Donations: Make a donation in the child's honour with a charity that will be helping the family. Our faves are:

- CHEO

- Candlelighters

- POGO

- Canadian Cancer Society

- Katelynn Bedard Bone Marrow Association

- Canadian Blood Services

- Make A Wish Canada

- Cash: while in general I have not been a fan of giving cash as a gift in many situations, I must admit that we have been grateful for the Go Fund Me campaign, the donations from families at Ollie's school and the individual cheques that have arrived in our mailbox unexpectedly. At a time when we'd ordinarily be even more stressed due to loss of income given I'm on EI making about 40% of my wage, we've been so thankful not to have to worry about money, too. Especially when it cost us an extra $4,000 a month in Toronto for the failed attempt at the bone marrow transplant and will be same when we go back again to finally get it! Cash enables cancer families to use your gift on whatever they need, and things do come up. From equipment like wheelchairs and handrails to a new washer and dryer when it conked out unexpectedly during round two of chemo, big unexpected expenses come up. 

- Other Personal Gifts: We've also received so many thoughtful gifts like stuffed Llamas when Ollie lost his, beautifully made blankets, PICC covers, religious icons, rosaries, books, etc. A personal, thoughtful gift is always appreciated.

Thank you to everyone who have been so incredibly generous with your time, money and emotional investments in our journey. When Ollie is well and COVID is over, we are planning one heck of a party and you're all invited to celebrate our collective victory!