Christmas Bliss and Blessings

It's been two whole weeks since I've written a post! This is partly because things were so busy with the holidays and partly because I was trying something my therapist suggested...to give myself time away from feeling like I SHOULD do something and to focus on things I WANT to do. That's not to say that I got to toss aside all of the household chores, disciplining the kids or anything else I should do, but rather that when I had rare "free" time that I made choices about doing things (or not doing anything) to give my body and my mind a rest.

It's been hard as I am a person who likes to get things done and am not very good at lazing about. I hate feeling that things are undone. These two weeks have been good for me to confirm that I missed writing and need to be writing in some way to feel right. I did take advantage of the time to recharge a bit, especially since the kids finished online school. I've read books, watched tv and movies (something I might do a couple times a week for about an hour normally), talked to friends and family and played board games with the family. 

It was good for me, ultimately, especially since one of the MUSTS in recent weeks has been dealing with my claims for Employment Insurance (EI) and Long-term Disability (LTD). My caregiver EI ran out on November 1st. Honestly when I applied back in February, our Pediatric Oncology Group of Ontario (POGO) Interlink Nurse did most of the work filling out forms for me and I just signed them. Ollie had just relapsed in his brain, gone blind and been in the ICU. I am certain the Nurse explained EI to me including the 35 weeks it lasted, but I didn't have the bandwidth to process anything else at that time. It was only in October when I started counting weeks that I realized my EI was about to expire. So I sought the advice of Service Canada about what to do next. They recommended I apply for Compassionate Care EI since Ollie's post-stem cell transplant period qualified him as still being "critically ill" and a time when I must be off with him. They also said my LTD claim would likely take a while and applying simultaneously in hopes I'll get at least one was wise. They told me I can always cancel and/or pay back the EI. 

So that's what I did and I got a letter on November 30th saying I'd been approved for EI, but no money has come yet and my online account says it's still "Under Review". Sigh. I have been trying to get through by phone for over a week to no avail. The last time I spoke to Service Canada they were supposed to send me a new online access code which never arrived, so I can't even try to see if I need to submit a report as it was unclear if I'll even need to do this. The irony is that I used to work for the department that is responsible for all of this. I know they're overrun thanks to COVID and I am grateful for their work, just frustrated as I know many Canadians must be right now.

And then there's my LTD claim. After weeks and weeks of filling out forms, meeting with my doctor online, coordinating with my department's HR advisor and the insurance company, they finally have started my claim. I got a call from them last week. They wondered why I hadn't applied back at the end of February when my sick leave ran out. I explained that I actually started the process to apply for this back in March when I was unbelievably stressed after Ollie's relapse. 

But suddenly Ollie was in remission and COVID was happening. I had to take Abby to Toronto for testing for her stem cell donation for Ollie and then we packed up our life and moved the family to Toronto for his transplant only to have him relapse two weeks later. We waited in agony, in and out of hospital due to fevers. Came back to Ottawa for radiation and a new drug. Suddenly in remission and back to Toronto for stem cell transplant. When we got back in September we had online schooling, physio, blind cane practice, doing our income taxes so CRA wouldn't stop sending the child benefit money we actually really need right now (funny because it was a pittance when I was working), and oh yeah - dealing with anxiety and mental health issues after our son nearly died this year. No biggie.

As a public servant I am well used to administration and bureaucracy and normally know how to navigate it, but with my anxiety already high these days as I deal with post-cancer feelings, I feel ill-equipped to do this and it increases my stress. As I explained to the insurance company, I am well familiar with policy since I work in it for a living, but even a policy needs to be interpreted and can't cover every situation. Sorry that I missed the 90 days deadline after my sick leave ran out to apply for a benefit I have paid for as a public servant for 16 years. Perhaps I should have worried more about your process than my son's cancer and stem cell transplant?! Unbelievable. 

Anyways, this all just makes me more grateful for the kindness of friends, family and even perfect strangers this Christmas. While we have access to a Line of Credit, and are doing okay as we wait for something to work out, people's incredible generosity continues. Family members sent Christmas money to buy the kids whatever they wanted. A thoughtful friend who is a cancer survivor himself and remembers what it was like when you get through cancer and everything seems great, but you can't work and have no money contacted me and gave us a donation from his fantasy sports pool because each year they sponsor a family or a charity in need. People have constantly and continuously showed up and supported us throughout 2020. I'll tell you more about this in a minute...

School and Kids Kicking Cancer (Karate) wrapped up for the kids with virtual dance parties. Ollie was thrilled as that's his jam. This kid adores music and dancing. He was so happy to be able to participate this year. Reminded me of his amazing school including him virtually in their Christmas pageant last year. Ironically all Christmas activities this year were virtual for all kids. 

Ollie had his last pre-holidays visit at CHEO on December 21st. They checked his cortisol levels again to see if we can remove that last "stress dose" of hydrocortisone (thankfully we haven't had to use it as no fever or vomiting to-date). No results yet, but everything else looks amazing. His blood counts are all normal. His hip MRI showed minor bone density issues, but as he's not in pain and didn't break anything failing down the stairs weeks ago, they feel confident waiting to see if his body will repair itself as it can at his age. His oncologist/post-transplant doctor marvels at how well he's doing. We are truly blessed.

Last week, Ollie showed interest again in trying a few Nintendo Switch hands he hasn't been able to play since he went blind. Daddy sat with him and narrated the entire game so Ollie could move through it and picture it. Abby tried to help him cook something last week and realized how difficult it is to narrate and explain everything we take for granted when we can see. Ollie's karate sensei dropped off activity bags and told me how Ollie is making them better teachers. He's making us all better teachers and communicators.

Overall we're just thrilled to be home together this year, not to have cancer or the next round of chemo hanging over our heads. 

We've had lovely pre-Christmas distanced visits from so many dear friends and our neighbours bringing us treats. We remain in awe of how people continue to think of us and love us even now that cancer has left the building.

Our actual Christmas was quiet, but mostly lovely. Christmas Eve we watched movies and mass online.

The kids were happy with their gifts and Mario and I bought a Roomba for each other with money from my parents to make our daily load a little lighter. 

Christmas was quieter with no family here, but we had everything we needed. 

Health, happiness and home.

Predictably Ollie got more Beyblades. I know what you're thinking...are there any LEFT for him to collect?! Sadly, yes and this special set was ordered from Japan months ago. Mario was unimpressed with the Japanese directions, but got it figured out and Ollie was so excited, so it was worth every penny and moment of frustration.

Abby got her coveted Oodie and has basically been wearing it constantly since. Might have to pry it off of her back to wash it soon...

Funny friends got us this hilarious ornament to commemorate an unbelievable year (in case we ever forget it 😂).

The last days have been spent doing what we always look forward to...simply playing with new toys at home! 

From mini pinball to mini hockey...

Decorating cookies...

And a lot of eating!

Speaking of eating...We got this unexpected and so appreciated delivery of meat from a kind stranger that we met online while supporting another special kid that I'd like to ask you to pray for.

A friend (Hillary McKibbin's mom, Kelly) referred us to Maverick's Army  telling us how unbelievable his stem cell journey to treat his Aplastic Anemia has been (as an aside, happy to tell you that Hillary is doing really well, too and her Aplastic Anemia has responded to the 18 months of drug therapies they've treated her with). I began reading about Maverick's story a few weeks ago. He's in Montana and his family lives a long way away from the hospital he's being treated in. He's the same age as Ollie and so very like him in so many ways. His whole journey has been about stem cell transplant and he's on number 2 now with many complications. Ollie had all of his complications during cancer itself, but the parallels are uncanny and I find myself repeatedly reliving it all. Why would I want to do this? Because you all did it for us and his family needs that, too. Because I promised God if He saved my son I'd spend the rest of my life spreading His Word and part of that is to give people hope and remind them that He makes all things possible. 

So we shared our story of hope with them. And as always, people (including his brave mama) responded with love and support. One woman named Doni from Billings, Montana even sent me a private message saying she's praying for us and wanted to send us something with the help of her nephew who happens to live here! So they brought us meat!!! Needless to say my carnivorous bunch here were thrilled. LOL  With many thanks to generous Doni and her nephew Jason at Farm to Fork, steak is on the menu for dinner tonight!

But getting back to the point of this, please add dear little Maverick to your daily prayers. His family is suffering right now and we feel this acutely. Maverick loves Captain America, so we put Ollie's Captain America shield in our tree with a special Christmas wish that he will get through all of this and be healed. We sat down to dinner last night and Mario asked us to pray for Maverick together (note that pre-cancer we almost never prayed together as a family). Ollie said the most beautiful prayer and included so many people on the oncology/hematology and stem cell journey that we are praying for: Maverick, David, Chloe, little Ollie, Lukas, Brian, Connor-William, Leslie, Annika, Lila and for dear little baby angels Malcolm and Tessa. Heartbreaking that he should know so much about suffering at his age, but so very proud of his beautiful and giving heart. 

We so hope you've had a beautiful if quieter than normal Christmas and are staying safe. We send our love and gratitude to each and every one of you for helping us through this year. I'll likely write some thoughts for New Year's, so until then, be well and count your many blessings despite everything.