The Brave Boy and Clowns at CHEO

Wednesday, 17 February 2021

Math, Milestones, Planning and Playspaces


The past month has sped by! So much has happened since I last wrote!

Ollie is doing really well physically, mentally and with his online learning. He's online with his vision itinerant teacher longer now (about two hours each morning) and doing some asynchronous learning with me in the afternoons from his class' online assignments.  He's doing amazingly well in Math, which I worried would be really hard without vision, but tactiles are incredible 
tools and his vision itinerant teacher has a wealth of experience in teaching curious little boys and keeping them engaged (even online!). He's amazing now atvdoing long addition, subtraction and multiplication with his tactiles and can even do it in his head now! We were playing the Bakugan game with him on Sunday and he was easily counting up the hundreds of points in his head! Neither chemo nor radiation has affected this boy's big brain!


We're joining his online class when there are activities he can participate in easily (he loves Mondays where they do Community Circle and show and tell). He's reading more Braille and in full sentences now (we're on his fifth Braille book and each is about 30 pages!). 

As part of his vision itinerant program there is a Daily Life Skills teacher and a couple of weeks ago a handful of grade 3 boys met online to talk about making their own breakfast and how they did it. Ollie made himself toast with butter, a boiled egg (we use an electric egg steamer with him so he doesn't have to use the stove yet) and a chocolate milk. He was pretty pleased with himself and we were very proud.


Speaking of eating...since he passed his 6 months post transplant milestone and is physically doing great, he was cleared to stop the low bacteria diet that he's been on since stem cell transplant. This meant he could finally eat lunchmeat and have the Subway sub that he's been dreaming about for 7 months!


It also means a return to fresh fruits that have no peel, so berries are back in style at our house! 


On the medical side, he's been doing so well. He used his incredible experience and bravery to coach daddy through his own blood tests recently when Mario's life insurance was up for renewal and he had to submit to tests to get a better rate. Mario hates having blood taken and it's seriously like getting blood from a stone. Ollie made him drink plenty of water and was delighted that finally daddy was the one who was NPO (NPO means “nothing by mouth,” from the Latin nil per os) that day. Ollie helped him breath deep, held his hand and talked him through it. My how far we've come!

Ollie didn't have to go back to CHEO for his own bloodwork and check up for an entire month (which was something to celebrate, but also anxiety causing for mommy who remembered vividly that he had relapsed in a mere three weeks originally). We did have to go for a quick pulmonary test on February 3rd and while we knew this was an easy test, I had been feeling weepy and uneasy for days about having to go back to CHEO. It's comforting to be there once we're there, but each time the idea of going back is still stressful.

So on February 3rd we arrived in Clinic C9 and a man came to meet us and called Ollie and I by name. I didn't at first think this was strange, but a few minutes later wondered how he knew my name as I am listed by my first name in CHEO's records (Dawn is my middle name). Plus most staff at hospitals call you "mom". 

When he introduced himself as Strider and explained that we'd emailed in the past, it all became clear. Strider is a respiratory therapist at CHEO, a friend and colleague of dear friend Jamie at CHEO. She connected us when we were in Toronto the first time when Ollie was relapsing. I had asked for survivor stories and she (and so many others) delivered as Strider is a two-time childhood cancer survivor. He sent us the most beautiful survivor story and gave us such hope. And on this day when I was feeling weepy and honestly anxious about the future and the possibility of relapse or a secondary cancer, this was a Godwink to remind me that everything can be okay. Strider has lived his entire adult life cancer-free and is working at CHEO to give back to kids who are just like he was. It was such a blessing to meet him in person and know that one day Ollie can also be a healthy and kind man just like he is.


We've been helping Canadian Blood Services and our friend Steve Gleddie at the Bruce Denniston Bone Marrow Society  to promote the #Beahero campaign to encourage folks to get swabbed for the stem cell registry. 


As a result of COVID, they can't hold swabbing clinics like the one that they were going to run in Ollie's honour last March before COVID hit and we had to cancel. So there are fewer people joining the registry at a time when there are more than 800 people in Canada waiting for a match and thousands more around the world. Most importantly we need to increase the number of potential Canadian donors (especially from ethnically diverse backgrounds) so that families that don't have at least a partial match like ours did still have hope that their loved one can be saved like our Ollie. 


We now know of two beautiful souls who got on the registry because of Abby and Ollie (thanks to Cate and Bev) last year. We also directly know 5 other families whose children needed transplants over the past year and 4 of those 5 didn't have family matches, but thank God found matches on the registry. 


If you know a healthy someone between 17 and 35, please encourage them to order a free swabbing kit from Canadian Blood Services. Be a hero to someone like our Abby is. Best. Gift. Ever.


We also got some pretty exciting news last week. Ollie is getting his Buddy Dog from the Canadian National Institute for the Blind (CNIB) on March 5th! Details will follow, but we know it's a lab and will be 2 years old on February 28th. 

We got Ollie the perfect dog toy...a NERF Dog Ball Blaster! He can't wait to introduce you to his new best friend!


Finally, today we had another medical milestone in that Ollie got his first two re-vaccinations. Over the next months he'll get them all again (as and when it is safe for him to do so). Please people, vaccinate your kids and tell your kids to vaccinate your grandkids...we're now doing it a second time because his stem cell transplant wiped out his immunities and I now believe even more in the power of medicine to keep us well and to heal us.  He was a complete champ as two lovely nurses did them simultaneously so it would only hurt once. And this after bloodwork! 


Now on to Abby! She's decided to cook us dinner one night a week. The first week was a pretty yummy taco bake. 

She's still not thrilled about online school, but is hanging in there and knows it's only a few more months.


We've also been working on "The Clubhouse" for the kids. This is a secondary building behind our home that was rebuilt in 2008 after snow caved the roof in. We've mainly used for storage and Mario's workshop, but there is a large insulated and finished space downstairs for Ollie's epic playroom (a Make A Wish of Eastern Ontario project to be revealed on March 3rd) and we decided to have the upstairs space insulated and drywalled to give Abby her own epic hang out space in recognition of the amazing thing that she did to save her brother last year. It also gives us space for the kids as they are getting older, will want friends over more when COVID is finally gone and allows us to move toys and crafts back there to recover some space in the house. 

Here was Abby's attic space before...


Used for storage of seasonal things mostly...


Thanks to some help from a contractor, our own little COVID project
took shape...


And large enough to hive off some storage space for the many seasonal things we still needed to keep after the major purge.


Out of found space, Abby's Epic Clubhouse was born...


Economically done with part of what was left from Ollie's Critical Illness Insurance money (the rest was invested for his future and in Lego and Beyblade cabinets for his space), but beautiful and she's pleased...


Now completed and even daddy likes to hang out there (partly because she has his old/never parted with papasan chair from his bachelor days)...


Everything a soon to be teenager could want...


So our hands are raw from assembling Ikea furniture, but our kiddos are healthy and happy with more excitement to come in the coming weeks. Mario has worked so hard on finishing both kids' spaces and we can't wait to see Ollie's finished with everything from Make A Wish.


As for me, I'm doing okay. I've had some really good days and a sprinkling of anxious or emotional days in between. Having the epic clubhouse project to occupy my "free time" has helped me not to overanalyze or play the "What if" game too much. I am just trying to find a balance between just dealing with today and not being afraid to plan for the future again. The clubhouse has been a good short-term project to satisfy my craving for returning to my natural planning self without being too far into the future. I'm not sure if I'll ever truly be able to go back to being my long term planning self without fear of the bumps in the road that may mess up those plans. We certainly didn't expect the last few and they've all taken way longer than expected to get over. Not sure we'll ever truly be over them. For now, I'm focusing on the short-term future and grateful that we have one with Ollie to look forward to.

Tuesday, 26 January 2021

Faith In a Better Tomorrow

I have not been okay today. I knew it was coming and tried not to make a big deal of it or to let the memory of January 25th, 2020 increase my anxiety or sadness, but it was too much for my battered brain and heart to ignore.

This was the worst day of my entire life last year. Worse even than diagnosis day. On this day last year Ollie had gone blind, I was told he had relapsed in his brain and spine, had to tell Mario and Abby, heard that he'd need radiation and a stem cell transplant, and he was transferred to ICU to manage his incredible pain and blindness. 
How do you ever forget your seven year old crying that he felt he was dying and begging you to make the pain stop? How do you forget having to cause your husband and daughter incredible agony because you had to tell them that lymphoma was trying to take over your baby's brain? How do you unremember sitting in a room of doctors who told you that they had no idea why your son was blind, if he'd ever recover any of his vision or if their treatment would definitely get him into remission for the stem cell transplant he'd now need?

I'll never be able to unfeel any of the fear, anxiety or sorrow that I felt on this day or throughout this week last year. I've never been so afraid in all of my life. Diagnosis was scary, but also a relief as we finally knew what it was and had a plan of attack. We were told it was a very treatable form of lymphoma and the ALCL 99 chemo protocol worked in about 75% of cases. Great odds we thought! 

Never did we imagine that he'd be in that dreaded 25% for whom it wouldn't work with the basic 6 rounds of chemo. Relapse and blindness came out of nowhere and thumped us on our butts good. For a brief time I was really feeling desperate and uncertain that he'd make it. My faith had been strong, but felt shaky that week. When I think back to that week I am always, reminded of "Footprints in the Sand" whereby I now know Jesus was carrying me. In retrospect, God sent me help to bolster me and prop up my faith. He sent me incredible messages of love and support from so many people. He sent dear friends to feed and check on Mario and Abby while they were ill.

He also physically sent me: 
- Roisin and Rich with gifts and hugs from St. George on the very day we were moving to the Pediatric ICU and were so overwhelmed;
- Nurse Kim in the PICU to help us through the night he was having seizures that I thought might be a stroke and to insist the next night that I take a parent room to get some real sleep for the first time in over a week while she and another nurse stayed with Ollie non-stop;
- Maria and Toni to nurture me and give me emotional support and physical respite when Abby and Mario came down with strep throat the same week that Ollie was in ICU;
- Vic and Jenna to bring Ollie out of his pain-induced coma-like state to show me my boy was still in there;
- Nurse Maddie whom we loved from 4 North with us in the PICU during a floating shift to help us through some difficult procedures that week;
- Jamie who actually worked in PICU, but was not assigned to us came to see us during her shift every day we were in the PICU bringing fresh fruit, snacks and the best and most needed hugs.

And there were so many other Godwink moments that I now understand to be signs from God that He was with us in our worst moments. 

That week changed the trajectory of our lives forever in countless ways. Naturally the blindness after a full year has completely changed how we support and parent him, how we feel now about ability (not disability), and how we help him to navigate and view the world. But it also changed our family's genetic footprint and our appreciation of medicine and science. That was the week we all went to have our HLA matching done to see if any of us were a stem cell match for Ollie. It started our less than smooth path to stem cell transplant and in the end made us all believers in the powerful combination of faith, science and medicine. 

He had another chimerism test last week. It's the fourth since transplant 6 months ago and it's still 100% Abby's cells. His "Abby treatment" has been unbelievably successful after so much agony and fear. His oncologist says that they've rarely seen a transplant (especially a half match) go so well and they wish they could bottle Abby's cells for others. She does, too. 

It's like these monumental days are now etched into our DNA and sometimes even without knowing why, each of us has reactions to the memories (in my case consciously, in the case of Mario and the kids, subconsciously as they don't remember the dates like I do). Over the last few days each of us has had our moments of freak outs and melt downs that are seemingly unrelated, but I know that they are connected to last year. Whether I somehow give off some subliminal signs or secret code that we should all be remembering these milestones or my anxiety and sadness simply adds to their underlying and omni present similar feelings, I don't know. I do know it's hard and that as my therapist says, it's also necessary to remember and feel it all to work through it and get past it. 

Other cancer moms tell me you never forget, but it does get easier the farther you get away from cancer treatment. The thing is, you never get away from it. The long term effects will always be with us and as Ollie grows up we'll have other potential physical side effects to contend with. 

Today he had an ultrasound on the back of his neck. On the very day that last year his relapse was confirmed and he went blind. What kind of cruel irony keeps putting me at CHEO for tests on already difficult days? It can't be random. So it must be for a reason...maybe to remind me of how strong we are? To show us how far we've come? 

Maybe it's to give us better memories on these days going forward. Today we heard that there is no bump in the ultrasound and our radiologist and oncologist believe it's a simple knot in his muscle. We're going to keep an eye on it, just in case, but unlike that first ultrasound on his originally very visibly evident bump on his neck, they saw nothing to be concerned about. Still, the initial fear in Mario's eyes when we got home and Ollie started talking about the radiologist coming in to look at it himself made me want to weep or rage that this anxiety and the unknown will always torture us to some degree. Thankfully I was able to reassure him that the radiologist saw nothing and a call shortly after we got home from our oncologist confirming this was comforting. 

So we've had an emotionally exhausting day, but it's turned out so much better than this day last year, so we'll take that as a win. I'm not okay, but I am getting better slowly as I work through the last 15 months of fear and sorrow, one day at a time. January 25th, 2020 took a lot from us, but it didn't take our Ollie or our faith.

For those of you who tell me we remain in your prayers, thank you so much. Days like today are why we still need them and are grateful for them. 



Wednesday, 20 January 2021

Half Re-birthday

Happy 6 months post stem cell transplant to Ollie!!!

On this day +184 days or 6 months ago from July 20, 2020, Ollie received his sister's lifesaving half match stem cells after an unbelievable battle with Anaplastic Large Cell Lymphoma ALK Positive and two relapses in his central nervous system. 

We can hardly believe that it's already been 6 months. This is another important milestone in the stem cell transplant journey in that if all is well at this point, the re-vaccination process can begin for him. Normally if COVID-19 weren't with us, this would be the point at which Ollie could start to have some interaction with friends and family again. Sadly, that will have to wait until after COVID.

As for Ollie, he is mostly excited to be able to eat deli meats (no Subway for 6 months!), berries (not allowed on low bacteria diet) and to be able medically to get his Buddy Dog from CNIB whenever they have one ready for him.


On Monday we were at CHEO for 5 hours for multiple tests and checkups. 

He had an electrocardiogram and an echocardiogram, a bone density test, and an x-ray of his pelvis and hips. 


In addition to his regular bloodwork, he also had another chimerism test to verify that his sister's stem cells are still 100% functioning in his body. They have been each of the three times he's had this test and his oncologist/post transplant doc confirms that his sister's cells are the overachievers that Abby said they would be. 

He asked Daddy to watch him have his blood tests to show him how brave he is.

He also had an additional blood test to see what (if any but apparently there is a slim chance of having any) antibodies he may still have or have gotten from his sister's cells. This will be used to determine the re-vaccination schedule for him to start as early as next month! Like a newborn baby they'll start with the non-live vaccines and by end of his first year post transplant will finish with the live ones when his new immune system is even stronger. 

Only after he is vaccinated and COVID is gone will he be able to physically go back to school (and I to work).

 He capped off his CHEO visit with a chat with the social worker to follow up on his pre-Christmas request to meet her. I sat outside the room (door open) and listened to music and talked to the doctor while he had some "privacy" to talk about feelings. I am glad that he's seen Abby and I talking to mental health professionals and sees value in it for himself. If only all children were taught about mental health. Only in this way will he be freed in adulthood from the emotional chains that go along with repressed memories and feelings.


Physically he's been well although a bit tired over the past week and Mario did find a little bump at the back of his neck last week. He's having an ultrasound next Monday to ensure it's nothing but as the parent of a cancer survivor, the fear of recurrence never leaves you. I am actually participating in a research study about pediatric fear of recurrence in survivors with the University of Calgary right now and will share more on this as it develops.


The irony is that as the parent you have to assuage their fears and reassure them that it's likely nothing to be concerned about at the same time as your own alarm bells are ringing and you're trying to keep your own anxiety under control.


But we know that there will always be at least little bumps in the road and we can't choose a smoother path, so we just have to fight the instinct to immediately put our armour on and ready for battle. This is hard when history tells us we should never let our guard down.


Last year on this day Mario and I were so stressed because Ollie was inpatient very ill with what we suspected but did not yet know was Anaplastic Large Cell Lymphoma in his brain and spine. 
We also suspected, but didn't know yet that he was having seizures (due to a sodium issue called SIADH) and a CT on this day was inconclusive. Five days later he'd be blind and transferred to the Pediatric Intensive Care Unit (PICU). 

It seems bizarre to me that the same week that marks a year since he relapsed and went blind is the same week that we celebrate 6 months post transplant. Perhaps it's God's way of reminding us to focus on the good and to remember to be grateful despite everything bad that happened. 


A dear friend gave me this stone that she brought back from Florida for me last February after the worst weeks of our lives. She said she had been thinking of us constantly and saw it and knew she needed to give it to me. I have kept this stone on the shelf in the bathroom since then. Some days when going back to the hospital after spending a night with Abby I'd put it in my pocket and carry it as around for a few days until I felt strong again. It would also make me laugh because pre-cancer Ollie was always coming home from daycare with rocks in his pocket, so it was connected to him in more ways than one. Today as I brush my teeth, wash my face, wash my hands, or even clean the bathroom it reminds me that despite the daily fear we live with that Ollie's lymphoma will come back, we need to have hope that it won't and faith that God will carry us all through whatever might lie ahead for Ollie and the rest of us. 

As I tell Ollie when he's worried, we pray daily that it is done and will never come back, but if it does, we know we beat it before and we'll fight as many times as we need to in order to keep him and kick lymphoma out.

For today we'll just put our party hats on and celebrate another milestone reached by our incredible son with the help of our unbelievable daughter's stem cells. 

Hope lockdown is not too hard where you are and trust me, we can all do hard things when we have to.

Friday, 1 January 2021

Vale annus horribilis (Goodbye horrible year)!

Like everyone else, with it being New Year's we are looking back and reviewing the year we've had. Many many times in the last weeks I've reflected on the happenings of 2020 and re-read my blog posts from the past year. Often they caused tears to stream uncontrollably. Sometimes they brought laughter over the unbelievable absurdity of what our life has been like this year. Always they inspired gratitude for all that we have overcome with your help.

Last New Year's Eve Ollie and I had just been admitted to CHEO for round 2 of chemo.


While it's true that we have had a pretty rough 2020, we are ending it with all we need - namely our family together, happy and healthy. Sadly we know families that had a much worse year than we did and have lost so much, like their innocent babies being taken prematurely by cancer and loved ones who succumbed to COVID-19. Our hearts have ached from their losses and our prayers have begged for their healing. Thankfully we also know many strong families who have overcome critical illnesses and their side effects to finally arrive on the path to wellness. 

 Family together after Ollie's successful engraftment during his stem cell transplant.


When I asked Ollie if there was anything special he'd like for New Year's Eve, he asked for a vanilla cake with sprinkles. Fortunately this proved easy to find through Instacart when we ordered groceries. The shopper asked if we'd like to have anything written on it. It seemed to us to be apropos to eat a "Goodbye 2020" cake. This year we have gotten our cake and tonight we ate it, too. 

We also let Ollie blow out "20" candles and make a wish to usher out the worst year of our lives. Again this seems completely right given this past week was actually his half birthday (when they were little we used to celebrate half birthdays because a year was too long to wait for cake!) and technically 6 months in remission for him and in a mere three weeks it'll be 6 months post-transplant. If those aren't reasons to grant the kid a wish, I don't know what would be.

As we ate cake, we talked about what we are grateful for this year and our biggest lessons learned. Here are our lists:

Ollie:

1. I am grateful for my family and friends who love me and helped me to get well.
2. I learned to be grateful even though my treatments were hard because many people don't survive cancer and I did.
3. I am grateful for chicken burgers.
4. I am grateful for my sister who saved me so I can still love AND annoy her! 😝

 Abby finally reunited with Ollie after he relapsed in his brain and finally got out of ICU. This was the day we went to have our blood tests done to see who would be the match for Ollie's stem cell transplant. Abby always said it would be her.


Abby:

1. I have learned that we should all be grateful for what we have today, because tomorrow is uncertain.
2. I have learned about and am grateful for makeup which has been a good diversion for me this year.
3. I am grateful that I still have my brother.
4. I have learned what is really important in life - being part of a family that loves each other.
5. I am grateful that none of us have gotten COVID-19 and passed it on to Ollie.
6. I am grateful for friends who have loved me and made me part of their family this year when mine couldn't always be together.

Family Day in February 2020. First time we'd all been together in over a month. Longest time we'd ever been apart and worst month of our lives.

Mario:

1. I have learned patience.
2. I am grateful for the family that I have.
3. I am grateful for the people around the world, some who I have never met, who cared about and prayed for my family.

The family in Toronto after Abby donated her stem cells and Ollie relapsed in his brain again. Waiting for a new drug to work (it didn't, but later going home for radiation and another new drug did) and trying to make the best of things while we waited and prayed for our miracle.


Dawn:

1. I am grateful to God for saving Ollie with the help of medicine, science and Abby's stem cells.
2. I always worried that Mario or I would become very ill and wondered how we'd weather it without family nearby, but have learned how incredible our friends, family and community are and that they have our backs and have been and will be there when we need them.
3. I am grateful for people who love my children like their own. For those that came to the hospital even when I know it was hard to see Ollie so sick and for those that lovingly watched over Abby and got her through tough times when I couldn't be there. 
4. I have learned that Nurses, Doctors and medical staff are superheroes in scrubs. That they are dependable, nurturing and truly care about their patients and their families. That when you use your voice in a positive, yet assertive way, the best ones will listen and let you help them to save your loved one.
5. I have learned that you can get used to living under the most stressful and bizarre circumstances if you stay hopeful and focused on getting through the next thing you need to do and not look beyond today. As a former strategic planner who is always focussed on long term goals this one was really hard for me.
6. I have learned how strong we all are, yet how important it also is to let yourself be vulnerable and feel your feelings. That feeling and showing them to others are signs of strength, not weakness.

Nurse Joan at Sick Kids Hospital supported us through Abby's 5 hour stem cell donation process. 

Jenna and Vic visit Ollie when he was in the ICU and Abby and Mario had strep throat and couldn't come. I was so grateful for them and two other dear friends who came in our darkest hours and supported us.


Not surprisingly, we're not sad to see 2020 leave as it truly has been our "annus horriblis", but we also realize that we have learned many important lessons and received many blessings this year because of our struggles. 

Wishing all of us a 2021 filled with love, laughter, joy and health!

Thursday, 31 December 2020

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.

Tuesday, 29 December 2020

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. 

Math, Milestones, Planning and Playspaces

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