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.

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. 

Sandy Hook Acts of Kindness and Christmas Spirit

December 14th, 2020 was the eighth anniversary of the devastating shooting at Sandy Hook Elementary School in Newtown, Connecticut. Each year since the tragedy I have held my babies tight on the anniversary and thought of those 26 families who lost their loved ones senselessly in a heartbeat. I pray for the families of the 20 little angels who never came home from school that day in 2012. Ollie was just 6 months old when that happened and Abby was 4 and a half and in her first year of school. I remember being decimated by it and crying while imagining the horror of losing my child. Mario made me turn off the news because I felt it so acutely.

Last year we had just gotten home a few days before the anniversary after round 1 of chemo. It was the first time in my life that I had a tiny inkling of what real torture it is for parents to grapple with their child's mortality (little did I know how close we'd come to losing Ollie in the months after). After the anniversary last year we were only home a few days before Ollie landed back in CHEO with his first of several infections due to low neutrophils. And as scary as it was, I just remember thinking that even with cancer and infections, at least I still had my child to hug. And we were lucky enough to make it back home again on December 23rd to be home for Christmas and then back in for round 2 on New Year's Eve last year. 

If you are feeling sad about not seeing your loved ones due to COVID-19 this Christmas, please try to remember that other families that are fighting serious illness this holiday season would happily trade places with you in a heartbeat and wish that COVID-19 was the only thing making their lives more challenging. We are thinking in particular of all cancer and bone marrow transplant families battling right now and those that have lost a loved one this year and sending them all prayers and strength to get through this holiday period. 

Earlier this year after Ollie got lymphoma in his brain and went blind, we began receiving messages of hope and thoughtful gifts from Louise from Brampton. Louise does 26 random acts of kindness each year in honour of all those lost in the Sandy Hook tragedy. She chose to send hope to Ollie and Abby this year and this has meant so much to us. Recently the kids received a Christmas package from her, complete with letters from Santa lauding their bravery and kindness this year in spite of the difficulties they've faced. It couldn't have come at a better time as it finally seemed to pull the kids out of their Bah Humbugs and pushed them into their Christmas cheer! Thanks, Louise! 

So Christmas spirit is here, albeit with a bit less excitement than past years, but we finally got the kids to help us decorate the tree.

Ollie got to add the star this year and that moment felt pretty special to all of us.

Christmas carols are being spontaneously sung, we've had some Christmas dance-offs and started watching Christmas movies. Ollie even wrapped most of my gifts this year (although despite his blindness, I still didn't have him wrap his own gifts as he's super smart and can figure most gifts out by their feel and sound!)!

Snuggling while watching Christmas movies!

He's also done some Christmas activities with his vision itinerant teacher, like making a snowman out of baking soda and hair conditioner!

And Christmas always requires funny hats...

The Epic Playroom is coming along...the kids have now dubbed it the "Clubhouse" and Make A Wish of Eastern Ontario will be helping us out to make Ollie's accessible space truly epic! More to come on that, but for now, here's a box that one of the new additions came in...

This cracked us up...

But Ollie being a typical kid insisted we keep the box and make a fort...we're now convinced we should have saved some money and instead of the Epic Playroom and just bought him a box!

The box now dominates the living room and Chewbacca has also decided to hang out in it when Ollie vacates it! 

Barely enough room for Ollie to do his karate power breathing with Daddy with the box in there!

So that's how things have been rolling here. Medically Ollie remains very well, now only going to CHEO every two weeks for bloodwork and checkups. He did give us a big scare recently when he carried a big present up the stairs on his own (after I told him not to!) and when he got to the top, misjudged his footing and tumbled down seven stairs to the landing! I heard the fall from the kitchen and went running up with my heart in my throat! Mario had been in the bathroom upstairs and cane running out as did Abby from her room. Ollie jumped up immediately and said, "I'm okay!!!" Thankfully I'm usually good in a crisis and a trained first aider at work so I remained calm while checking him out all over. Despite some bumps and bruises he always okay and swore nothing hurt. 

Mario and I were both immediately concerned about his bones and especially his hip given his reduction in bone density (he's having an MRI this week on his hip). Mario was also afraid and started getting mad at Ollie given his fear. Then Ollie started crying because daddy was mad at him. At this point I told Mario anger wouldn't help and I knew he was afraid and then I started crying and shaking. I sat on the step and started trying to do some deep breathing to calm myself and let the shock go (my therapist says my body's reaction to the stress was perfect and it shows I'm trying to let the fear go versus holding on to those feelings). Abby tried to hug me to calm me down (and herself, too). 

Ollie had stormed off to his room by then, which was a positive sign that he was physically well enough to stomp off. Mario and I went and laid with him in his bed while Abby sat on the floor nearby and we calmed him and told him that our reactions were because of our fear of him getting hurt. We assured him that we knew he was strong enough and big enough to carry things up the stairs and no one doubted his ability, but that with the reduced bone density, he couldn't take these risks yet until we were certain his bones could take a tumble! We told him that we didn't want to see him end up in hospital with a broken hip or worse. He calmed down, apologized for not listening to me and we all went to bed. At Ollie's CHEO appointment today, his doctors joked that this was not the way they recommended testing bones, but it is clear that his are still very strong and he was okay. 

Aside from this he continues to have some swelling in his eyes and it gives him the odd small headache which they believe is persistent dry eyes from all of the radiation and the optic nerve continuing to heal what's left of the inflammation, so he we'll go back to using the artificial tears for a bit. There's a natural tendency to stress that it might be lymphoma in there again, but as we discussed with his doctors today, his severe eye pain and brutal headaches came on fast when he was relapsing and his energy level was nil. Given Ollie was dancing during his appointment today and he's constantly in motion with his increased energy stores these days, it seems highly unlikely that the lymphoma is back. I am once again comforted by our decision to continue him on the Lorlatinib (his cancer is Anaplastic Large Cell Lymphoma ALK Positive and this is an ALK inhibitor that targets and blasts any cancerous cells that may try to reproduce) post transplant and remain grateful to Pfizer for providing it to us under compassionate grounds. 

Abby's Point of View

On December 3, 2020, Abby's Point of View piece was published by CBC News Ottawa on their website and on social media. She'd been asked to do this piece back in August when we were still in Toronto for Ollie' s stem cell transplant and one of the producers saw the blog post that she wrote at that time sharing how she was feeling about Ollie and COVID. 

She's always wanted to be a writer and writes profound, insightful pieces for one so young. She was thrilled to be asked to do this and even more thrilled later to find out she'd be paid for her piece, so it was not only her first published work, but also her first paycheck ever, too. Stem cell donor, advocate, writer and breadwinner at 12 years old!

The letter that she wrote was accompanied by a video of her reading the letter and photos of our journey to get Ollie well. She worked on the letter for months with the editor/producer and the videographer spent a lot of extra time working on making the video as beautiful and moving as her letter. 

To-date it has been posted on CBC Ottawa's Instagram, Facebook and Twitter accounts, CBC Kids News and was featured in the CBC National News that night, too! Overall it was a tremendous experience for her, although the outpouring of response has been overwhelmingly emotional for her.

Our Member of Parliament and Minister of Infrastructure and Communities shared it and sent Abby a message...

And of course, Alex Munter who is the President and CEO of CHEO shared it, too! 

And Canadian Blood Services shared it to promote stem cell donation, of course!

She got messages from the Prime Minister's staff, Ministers and Members of Parliament, doctors, lawyers, teachers, nurses, authors, national and local journalists and media personalities and so many others across Canada! Family and friends from across the country were so excited to see her on the National!

We are so incredibly proud of her and her bravery in not only giving Ollie stem cells, but also for sharing her donation story with Canada and using it to highlight the importance of masking up and protecting those that are most vulnerable right now.

P.S. - Ollie is still doing great and we'll share an update on him again soon!

Fighting the Bah Humbugs

Wow! December 1st already! The days have been so busy that I haven't had time to write anything in over a week. It feels foreign not to write now. Like part of Ollie's story is being omitted, but truthfully, he is doing so well and the story has become kind of routine for now.

 Other than routine bloodwork and check up at CHEO every second Monday, he's only had a pulmonary test last week. Ollie was super calm and sailed through it no problem. His breathing and lungs look normal and so much better than when we last did this at Sick Kids. He was relapsing the second time then before his first failed attempt at getting the stem cell transplant and he had major shortness of breath. So no permanent damage to his lungs now! Yay!

We're still eating a lot of Ollie's Pizza from Gabriel Pizza, only lately it's customized online to add pepperoni to it, too! If you are in Eastern Ontario and haven't tried it yet, there's still time and don't forget it helps Candlelighters Ottawa to help families like ours fight cancer.

There's still exciting moments like receiving an unexpected package from Louise from Brampton (Google her!) who has been so kind to Ollie and Abby as one of her many random acts of kindness in honour of the little innocents taken too soon at Sandy Hook. The package came at just the right time for Ollie who was feeling "glum" about Christmas this year. Even though he's well he knows we can't see family this Christmas because of COVID-19.  

We did start decorating for Christmas. Neither of the kids have been into it much this year. I'm really trying to bring the Christmas cheer, but so far it's a slog. Wish me luck!

Funny thing is last year at this time we were in hospital for 12 days for round 1 of chemo. AND Ollie landed back in hospital for 4 days just before Christmas with an infection, only getting home on December 23, but Christmas was still joyous because Gamma and Bumpa came. They helped us to bring some festive atmosphere and to squeeze whatever joy we could out of it even though cancer was still new for us. In an incredibly bizarre way, last year was one of our best Christmases because we took nothing for granted and simply tried to find joy in anything we could.

So we're slowly injecting Christmas. Like putting up my Grandma's tree from my childhood.

And setting up our usual artificial tree,  thank goodness as we wouldn't be allowed to have a real tree anyways with the need to keep bacteria, mould and mildew away from Ollie's still developing immune system. I am grateful right now that we have very few plants and most are cacti.

 

So our tree is up, but not decorated yet because I want the kids to do it with us and they're not feeling it yet. Maybe we'll each add one item to the tree each day and talk about the ornament's significance or why it brings joy until the tree is decorated...in the meantime, Chewbacca has claimed it.

This one cracks me up...still wearing the Halloween shirt and now grudgingly adding the elf hat...

The past week Ollie has also be practicing with his cane on the many mild days we've had. We learned a few things. First that the repair at the end of our street obstructs the lines Ollie and other blind people need to tell them they're getting close to the end of the sidewalk. Thankfully when I contacted our City Councillor about this, he and his office staff immediately agreed to get the City to fix this ASAP and to put up a solar-powered speed radar in hopes that will slow cars down on our stretch to make it safer for Ollie. We are grateful to Jeff Leiper and his team for their assistance in keeping our Ollie and all blind and low vision people in our neighborhood safer.

We also learned that to make the audio signals go at the traffic lights, you have to hold the button for 5 seconds. There is Braille on the button that tells you North-South or East-West directions. There's also often a big tactile arrow now to further assist blind and low vision people in knowing which button goes which way. Then there are different audio tones for North-South (Cukoo-Cukoo!) and East-West (Chirp! Chirp!)! Mind blown! I never thought to wonder why there seemed to be different tones!

Ollie's still working on becoming more independent. He can now use this

pouring device to pour his own drink and know when it's getting to the top! Once the liquid reaches the prongs on the inside of the glass it starts beeping and buzzing. It scared poor Ollie the first time and he spilled his milk! Second time was the charm, though and he's mastered it now.

With a little help from his vision itinerant teacher he just finished reading his first full Braille book on his own! My how far he's come for a kid who just started learning Braille this summer!

She also sent him a tactile ball with a tether he straps to his wrist and now he can play catch with me or toss his ball against the wall and easily find it again! He LOVES it. Laughed out loud in glee the entire time we first tried it.

And we commissioned our dear friend Sohail (who is a talented welder and metal fabricator) to make us some railings for the deck and front porch to make it easier for Ollie to go up and down confidently without assistance. This will be helpful when the epic accessible play room out back is ready (big reveal to come early in the new year!).

Abby is liking online learning a bit better now that they're doing more interactive things like science experiments (wish they teach them to clean the kitchen after!) and they're using online breakout groups and she's getting to know some of the kids in her class better. She currently has only two friends from her actual school in her virtual classroom.

And she's still helping Ollie to do karate and actually benefiting from it herself, too.

The last few days she just felt like dressing up, so she did and put all of us jeans and track pants wearing folks to shame.

Mario is super busy at work. Still working from home mostly with the odd day where he has to go in for a contractor to do work or to pick up or drop off a piece of equipment. His days are longer than normal, but I know he's trying to make up for the many days over the past year where he put in shorter days to come to hospital to see us or to be there for big procedures and tests. We are grateful for the flexibility of our employers and the fact that they never had an issue with us prioritizing our son's health over work. It's shocking to me that some employers would not be as understanding to an employee with a sick family member.

As for me, I'm good most days. Some days are great, like this one where we played in the snow completely joyously, without worry about Ollie's health. Others are overwhelming and hard. I've finally finished the paperwork and obtaining documents for my next EI claim and my LTD claim. Service Canada advised me to go for both at same time and decline one of I get both. Hopeful we get one as my 35 weeks of caregiver are now done and I am without income. Thankfully I also got our taxes done with the help of our terrific accountant, so the return from last year should help us bridge this period. We are grateful that we have not had to take on much debt to-date as a result of the generosity of people and support from charitable organisations. 

I also had an interview with the new chair of the parent advisory council for Hematology and Oncology at CHEO and the Director of Hematology and Oncology. They're looking for new members and I'm thrilled to be joining them. As it happens, we met the chair while inpatient on 4 North and she's currently at Sick Kids with her daughter who had a bone marrow transplant almost three weeks ago. She was so kind to me and told me that she'd been referred to our blog when she was looking for current info on BMT. She said she'd been afraid of BMT, but started reading and found it so helpful that she read the entire blog! She told me that she felt I was writing exactly how she felt and what she experienced with her daughter's journey and she was at least one person helped by what I wrote. I was in tears. As she said, we are bonded in the same club that none of us ever wanted to join. I got a message from her today that her daughter's counts are going up and she's engrafting! More happy tears! I have an overabundance of these lately.

Mentally we all have our moments. Break downs, outbursts, sensitivity, overreaction, unexplained sadness or depression, anger...they come at the most bizarre times, but thankfully we seem to be taking turns as opposed to all melting down together. LOL The therapy is helping and even Ollie seems to see the value in it. We bumped into our social worker last week at CHEO and when she asked how he was feeling, he told her angry and sad sometimes and maybe he should come and see her. She immediately said she would and asked me to set up a time. 

He's a different child emotionally than he was a year ago when he NEVER wanted to talk about his feelings and it was a revolving door of social workers, psychologists and psychiatrists trying to talk to him over the past year. This tells me he's going to be okay because he wants to be. He knows he'd rather be happy and the only way to get there is to get the bad feelings out. If only adults understood this as well as he is starting to.

I'll likely write more later this week to finally share what Abby's been up to with CBC. Stay tuned!