Appreciation, Vaccination and Integration

[Photo description: Ollie and Hope asleep in his bed while he hugs her.]

Throughout Ollie's cancer treatment, stem cell transplant and recovery period we have been loved and supported by so many. I've said this many times over the past year and a half and I never stop being overwhelmed by how many kindness have been sent our way. By the selfless acts and the humility with which people simply tried to do the right thing to help our family in whatever way they could when we were in need and to help us to keep Ollie as safe as possible throughout this period.

[Photo description: CHEO's signage last fall notifying visitors that it was flu season and of measures they'd put in place to keep patients safe.]

People took special care to prepare meals safely and only when they and their own families were well. I received several messages over his treatment from friends who were signed up to send meals that said someone in their family had a cold (pre-COVID) and they didn't want to risk passing it on to us so they either sent us an e-gift card to buy a meal for our family instead or brought it by later when they were all well again. 

[Photo description: A foil wrapped dish of Chicken Broccoli and Rice Casserole from one of Ollie's former kindergarten teachers with the message, "You've got this Ollie. Love Ms. Charron" with heating instructions.]

Some families who were helping us with nurturing and chauffeuring Abby checked in when they had illness at home to warn us that we'd have to reschedule or even went the extra mile and called another of our friends who were well to arrange to take Abby when they couldn't. The school would call us when there was an outbreak of anything they thought we should be aware of in case we wanted to keep Abby home for a few days to avoid potential exposure.

There were many gifts dropped off lovingly and carefully with notes or messages texted to us explaining how they had taken extra precautions to sanitize them for us before dropping off. Respectful drop offs happened regularly where they gave us space for safety even before COVID struck and we all needed to. I remember being in church in fall of 2019 and a mama I knew who had heard our diagnosis news came to me and hugged me apologetically. She said she knew she really shouldn't be putting me at risk by hugging me, but told me she knew this was likely the last hug we'd be able to have as treatment got under way because she was a cancer survivor (I hadn't known!) and knew what we'd need to do to keep him safe, too. 

[Photo description: Ollie in his hospital bed at CHEO just after COVID-19 began in Ottawa in March 2020. Dearest friends (family to us) Uncle Vic and Mackenzie play Beyblades with him while wearing masks to protect him (and this is long before masks were recommended).]

So many of our closest friends and family got flu shots over the past two flu seasons for OLLIE. Because they knew we might need their help and they couldn't risk passing a flu on to us when Ollie had low neutrophils from chemo and post transplant. Many of them wouldn't normally get a flu shot, but got it for us. They told us they knew they needed to be ready to help us and couldn't be anywhere near us if they got sick.

These are the most beautiful gestures of people caring for each other. Of people selflessly putting the needs of an immuno-compromised child before their own. Of realizing that they had the power to make things a little easier and a little less scary for us as we fought to save our child's life and began to fear all of the invisible bacteria and viruses that could potentially kill someone with a low functioning or non-existent immune system. These generous souls researched and educated themselves on how to help us. And it wasn't just people we knew. Many were friends of friends and some even perfect strangers in our neighborhood and our city who heard our story and were moved to help in some way.

[Photo description: Friend Alexa's Instagram post sharing that she had donated blood in BC in Ollie's honour.]

So many friends and family from afar have donated blood and tagged us in posts saying they were doing it for Ollie. Several incredible humanitarian friends got swabbed and are now on the international stem cell registry because they were moved by Ollie and Abby to try to help other families like ours who need matches to save their own children. And many many more have sent financial donations to us and to every single fundraiser we've supported for the various organizations that have helped us to survive it all.

Why am I reiterating so much of this now? Because the truth is we're always ALL OF US in this together and we're all connected whether or not we want to be or even realize it. This is true not just during cancer, nor just during COVID, but always. COVID has just made more people realize it and yet there are still some who continue to live their lives like they should do whatever they want, whenever they want, without concern for how it impacts others.

[Photo description: Dawn, Ollie and Mario wait at CHEO for caregiver COVID-19 vaccines.]

Last weekend Mario and I got our first Pfizer COVID-19 vaccinations at CHEO as part of the province's Phase 2 where caregivers of stem cell transplant recipients (they're vaccinating every recipient and/or their caregivers within 3 years of transplant) were finally eligible to get vaccinated. It was an emotional day and Ollie was with us to mark it, wishing he could get the vaccine too (he will as soon as it is approved for immuno-compromised children). As most parents would, we got it first and foremost to protect our little survivor. 

[Photo description: Dawn is given her first dose of Pfizer COVID-19 vaccine at CHEO during their caregivers' clinic.]

But the truth is that we would have done it for anyone else's child, too. Just as Mario was a Big Brother and I was a Big Sister for Big Brothers Big Sisters Ottawa to help other people's children. When we first volunteered we didn't know the children or families we'd be helping by volunteering to be mentors. We spent our time and money to help these children become strong and independent adults and I'll tell you it was totally worth it. I know that our not so Littles (both have families of their own now) and both of their moms read this blog. Any person who's volunteered to help someone else would attest to the fact that they felt that they got much more out of doing something good for others than they gave.  

[Photo description: Mario is given his first dose of Pfizer COVID-19 vaccine at CHEO during their caregivers' clinic.]

Getting back to the vaccine, I've watched this week as the AstraZeneca vaccine (that so many were fearful of due to reports of blood clots) was opened up to our peeps in the 40+ crowd and rejoiced in how friends and family have embraced this and went out in droves to find and get the jab wherever they could! Record numbers of fearless, altruistic people who just want us all to do the right thing and take care of each other and end this nightmare finally. Again, I got so many messages from so many of you sharing that you got it, knowing that each one makes my anxiety lessen a bit and increases my hope that Ollie and all of us can safely rejoin the world again soon. We love that so many of you think of us, but know that you are all worth protecting and so are your loved ones, too, so please keep getting vaccinated everyone! 

[Photo description: Ollie high fives Mario after getting the first dose of the Pfizer COVID-19 vaccine at CHEO during their caregivers' clinic.]

Before I sign off, I want to share a powerful and a shockingly familiar story with you. It's about a smiley, kind, smart, determined 13-year old boy named Mateo. I tell you this story and share his photos with permission from his amazing mama who shared them lovingly with me. 

In the summer of 2016 Mateo became very ill and doctors couldn't figure out what it was, so he was admitted to CHEO for a month and a half while they did countless tests to get a diagnosis. By October he had started to grow lumps on the side of his neck and a biopsy finally revealed that he had Anaplastic Large Cell Lymphoma. He also had Hemophagocytic Lymphohystiocytosis (HLH) which is a severe inflammatory syndrome and complicated his ALCL treatment significantly, making him higher risk. The ALCL had also spread to his spleen and lungs by the time he was diagnosed. 

[Photo description: Mateo before being diagnosed with Anaplastic Large Cell Lymphoma.]

Dr. Abbott (Ollie's doctor) was his oncologist and I'm told he adored her (as do we). He began with the standard ALCL treatment that involved 6 rounds of chemo and his disease shrunk on his scans after the first treatments. Suddenly during his treatment he relapsed with lymphoma in his brain and spine. He went blind in one eye. They gave him stronger chemo treatments to try to get him into remission, which made him very weak and sick. The doctors tried desperately to find clinical trials that he might qualify for, but his condition was quickly deteriorating and the timing to get into a trial was more than they had. He also had radiation, but it wasn't enough. They had been told that if he could get into remission he could get a stem cell transplant at Sick Kids Hospital because miraculously his brother was a perfect match. Sadly even the hard core chemo and radiation couldn't get him into remission. The boys begged for a chance at transplant and with no other options left, Sick Kids agreed, but it was very high risk. They both got baptised just before they went to Toronto for transplant. 

Mateo got his brother's beautiful and perfectly matched stem cells, but he was too sick. A week after his transplant he fell into a coma and wasn't expected to live more than a few hours, but ever the determined fighter, he hung on so they transferred him home to Ottawa where he passed five days later in June 2017. His family and friends have missed him every single day of the four years that he's been gone.

[Photo description: Mateo during treatment for Anaplastic Large Cell Lymphoma.]

I believe in the depths of my soul that Mateo and his unbelievably brave family taught our oncology team what they needed to know to save our Ollie. That Dr. Abbott knew how to treat his first relapse and to request the miracle drug Lorlatinib from Pfizer (developed and clinical trials done since Mateo passed) under compassionate grounds after Ollie relapsed the first time because she knew we'd likely need a plan C and had to be ready with it quickly. Thanks to this it was there and ready to access when we needed it and it saved his life.  Mateo helped to save my son. 

His mama and I are forever connected because of our sons. She wanted me to use her son's name proudly and tell this story because it keeps his memory alive and validates for us that every life is important and we're all connected in ways we cannot even imagine. That the sacrifices that we make daily help others and even when we are suffering, others will learn and gain from it. I can never repay her family for their sacrifice, but I will always speak of Mateo as the true hero that he was. 

[Photo description: Mateo at the beginning of cancer treatment at CHEO opens his shirt to reveal a Superman shirt underneath.]

So every one of you out there working through your own fear on the frontlines to keep us all safe, contributing to research, accepting risk for the greater good, taking care of each other, wearing masks, washing hands, staying home during lockdown and getting your COVID-19 vaccine is a helper and a hero in their own way. No one sets out to be a hero, but by doing the right thing they become one.

[Photo description: A clipart character connects dots on the floor with a pen.]

You have literally no idea right now how what is happening to you today impacts others around you and those that follow in your footsteps. Just like Mateo and his family had no idea that although they'd lose him to ALCL, he'd one day help to save Ollie and inspire us to keep helping others after us. I'm so glad that I learned about Mateo and was able to connect the dots between his sacrifice and my son's survival. Connect the dots and draw the  lines between you and others. Be brave and giving like Mateo. It may just save someone else's life down the road.

Home is where the heart (and the clutter) is...

We're home! Got home last weekend after a quick and uneventful trip from Toronto. It's so good and so surreal to be back.

This time Ollie climbed the stairs on our front porch all on his own steam. Man, it felt great to be coming back after a successful transplant versus a relapse like last time we came home from Toronto.

Family helped us by packing and moving all of our stuff with a van (thanks Sonya, Carson and Christine! 😘) so we could just have Ollie and his commode if needed. 

We took a lot of stuff to Toronto since we knew we'd be there for about 3 months (and bridging two seasons) and couldn't go far for entertaining the kids given COVID and the stem cell transplant. Naturally we also acquired more Barbies and Beyblades (surprisingly still cheaper than our normal summer vacation activities) while away. 

We were also grateful to the Nava family (who we are bubbling with) who brought our Abby home and helped to unpack the truck while their girls let Ollie talk to them incessantly about his new Beyblades.

When everyone left soon after the van was emptied, Ollie asked for an Ollie Pizza from Gabriel's, this time half cheese and half pepperoni. 

We were sceptical as he hadn't eaten pizza since transplant and his tastebuds had still been off, but as usual he showed us...

He ate a whole slice with crust included and had same for breakfast the next day! 😂 

Most of the first days have been spent unpacking and trying to declutter and reorganize our house and lives. This will take a while. We've basically been away from home to all intents and purposes since last November when he was diagnosed, with short weeks at home or at the condo in between/after rounds of chemo, radiation and stem cell transplant. In the 303 days since diagnosis we've spent 131 days admitted to hospital, and a further 83 days outpatient at hospitals for bloodwork, tests and check ups. That's 214 days at hospitals, leaving 89 days not in hospital, but for about half of those we were in Toronto. 

So really we were home without significant cancer intervention for just over a month this year and I didn't even count the online Braille lessons, physiotherapy sessions, online consults with doctors, etc., which still happened in those 89 days. So very little time and basically zero energy to do anything significant at home for almost a year. Now I have to pace myself because I so desperately want to put things in our home to right like we are doing with Ollie's health. It's going to take a while, despite that. Fortunately I'm getting good at running the proverbial marathon when needed. And I have evidence of what's really important.

I went through all of our kitchen cupboards and fridge as I put things from Toronto away and threw out every opened and expired food we had after a year of hardly being here (and when we were, most often you lovely people fed us through the Meal Train and your constant spontaneous drop offs of delicious goodness!). Two kitchen garbage bags full! Also got rid of all opened flour, oats, etc. Basically anything that could have mould spores and make Ollie sick. 

Donated all unexpired, unopened snacks to Ollie's school for Breakfast Club (thanks for picking up, Siobhan!) as my two won't eat them since they're doing online learning and there's no lunch packing for this family (yay!!!). A nice way to help out other families, too since the School community helped us so much last year with their food and financial donations.

We have been having some fun...almost daily walks to the Merry Dairy (thanks for all of the gift cards, folks! We're making great use of them!) to encourage Ollie to walk more.

At first he walked a block...

Got an ice cream reward...

Now he's almost running the whole way (about 3 blocks) and pushing his sister for resistance!

He's singing and wanting to dance. Keeps trying to teach us all how to tango...

Most of the time happy to be together again.

We've played some board games and Beyblades...

Had our favourite Chinese (Cypress Garden!)...

Hung out with our felines...(lots of hand sanitizer after and using HEPA filters to keep things as clean as possible for Ollie)

He's settled in to start virtual classes and we're working up to having the stamina to be in from 9 am to 1:30 daily (not there yet). Also still working on Braille. He now knows all of the letters in the alphabet and can identify a $5, $10 and $20 bill (so don't try to cheat him! 😄). Today he learned how to write in Braille with his Brailler and is super psyched to show everyone his new secret coder! And his new Braille chess set and a deck of Braille playing cards arrived making it possible for him to play without mom being his eyes (thanks Amy!!).

Abby starts online classes Friday and finally got teachers assigned today. She's happy to be home, but was sad to leave the Navas where she stayed the last month. She's naturally nervous about starting her new class, social distancing and whatever other changes may be lurking around the bend.

Her collaboration with Why We Swab continues as they promote our story on social media leading up to World Stem Cell Donors Day this Saturday, September 19. She's also been working on an opinion piece she was asked to write by CBC! Should be online in late September. Her life education in all of this has been extraordinary.

Mario is catching up on physical work like repairing and rebuilding computers that he brings home to work on, so he's geeking out and happy to do more than just helpdesk support. He's uncharacteristically the calm one right now, trying to keep us all from getting frustrated with each other. 

I am finding my groove. Having a hard time carving out time to write (not possible over the last handful of days) and to research for some cancer-related projects. Trying to not strangle my beloved Ollie as he tries to micro-manage my days now that he's feeling better (LOL) and I "work" for him. 

I'm still processing the fact that he's well. I go into his room sometimes when he's sleeping and turn the light on (he's blind so it doesn't bug him!) to check that he's breathing and doesn't have a fever. His rosy pink complexion tells me he's well. His eyelashes and hair starting to grow back are signs that we're through the hardest stuff, but it's still hard to believe that a year that could go so wrong so fast is ending so well so quickly. 

We're all still pretty emotional and often have short fuses right now, but we're working on it. We have to frequently remind ourselves that the constant imminent danger has passed and we need to try to react smaller to everything. A tall order for a bunch of dramatic and strong-willed extroverts who have constantly been in fight or flight mode for almost a year. But we're doing our best and getting some help to muddle through. Just content to be home, figuring out the next new normal.

Chimerism and Battles with Central Line #4

Ollie has been a bit more tired the last few days. It made sense to me that his body is working so hard to use those new stem cells that he'd be physically tired. I can remember vividly carrying him when pregnant and feeling so exhausted at times because my body was working so hard to build a beautiful baby boy. I can only imagine that his fatigue felt something like that. 

He is trying solid foods, but it's slow going as he still has some nausea, is fearful of throwing up more and his taste buds are still off from chemo, radiation and all of the drugs he's been taking. We keep encouraging and trying. 

We've tried to get him interested in activities this week, but most of the time he just wants to rest and watch tv. Well, listen really...thank goodness for shows with descriptive video as I never realized how much the pictures tell the story and how much is missed in dialogue alone. As an aside we had to request an original remote to the tv (the hospital uses a clean remote with recessed buttons so easier to sanitize) to be able to turn on the SAP feature with the audio description. These are the little things that that make a big difference to children with special needs that one rarely thinks about until you're dealing with it yourself.

It boggles my mind sometimes that in the span of ten months our kid went from seemingly healthy to critically ill to special needs. Sometimes my head spins when I think about all of the advocacy roles I can and need to play now. Caregiver, cancer parent, parent to a blind child, parent of a stem cell donor AND a recipient. 

I've always been supportive of various youth charities, with Big Brothers Big Sisters Ottawa (BBBSO) being nearest and dearest to our hearts as both Mario and I were Bigs. Now I know I'll need to expand my support to others that have and continue to help us so much with cancer and blindness. 

When I was President of the BBBSO Board the Executive Director and I used to wish that we didn't have to compete with the likes of CHEO for fundraising dollars. Ironic that I am now on this side of it, needing this support. I really need to win the lottery and help them all the way I really want to!

Ollie and I ended up intercepting a call to Abby from her best friend Francesca (I still monitor all of Abby's social media activity for safety) by accident the other day. Ollie was delighted to talk to Franny who kindly and promptly suggested a three way online chat with Abby. He was so happy to be part of the conversation and the girls were lovely in including him and helping him to make silly plans to open a pizzeria with them in future (sorry Gabriel Pizza! Don't mean to compete! 😜). 

It was a fun make believe activity that took his mind off of hospital stuff and reminded me that he's not able to play with friends right now and is missing that interaction. I've offered to connect him with his friends online, but he's been too tired to do it lately. 

We've finally worked out a plan with our friends who are taking Abby when school starts to have her and their daughter do online learning together for the first two months. We're basically bubbling our families together for socialization for the girls so neither is deprived of that while staying safe at home. That keeps their immuno-compromised family (both mom and dad are not working outside of the home) safe and ours, too. It will also make it easier when we come back from Toronto to reintegrate Abby back home with Ollie without fear that she is exposing him to any viruses as we go into the flu season and are still battling COVID. We'll see how things go in school those first months and decide whether we continue this way or have the girls physically go to school in November or later. 

It's a relief to have positive plans to get and keep both of our children well this fall and we are grateful to our dear friends and all who offered expert advice on this front. 

Thursday night I stayed with Abby at the condo as usual. I had a lovely chat with dear friend Charity who called to say how glad she was that things were going well for us. Charity is also our youth minister and I have worked with her on many spiritual endeavors over the last few years. She was one of the first people I told when I suspected Ollie had cancer and we were waiting for biopsy results. Then and now her faith and kindness have bolstered my belief that everything would be okay. 

She asked me at what point do we feel we've really beaten this and get to live without fear. My answer was never and now all at the same time. Never in that I know from other families who have a cancer survivor among them that the fear never really leaves you. It's always possible for your survivor to relapse or get a secondary cancer. When you are told the risks of chemo and radiation, they tell you that the treatment may later cause another cancer. Unbelievable. But you really don't have a choice and learn to accept whatever risks they throw at you, because the treatments are the only way to save the person you love. 

We also NEED to live NOW no matter what else may be thrown at us in future. We tell Ollie that he knows better than anyone that life can be unfair and unpredictable. That there will be suffering in your life that you don't anticipate, so you need to appreciate every moment and do your best to be happy and enjoy life. We also tell him not everyone gets a chance at rebirth the way that he has, so he can't waste it.

So I put on my new "it's going to be okay" mask on Friday morning and went back to the hospital. 

Ollie had a visit from A. Lebut (pronounced A. Leboo, but I have been informed that he is named for a hockey goal in French! 😄) and they played Bop It and other games that they made up for a bit in the afternoon. I was asked by a student nurse to do a family experience interview at the same time, so I was happy to be able to tell her what I feel is important, what Sick Kids does well and what they could do better from the parent perspective.

Friday evening before he left the hospital, one of Ollie's doctors came for a last visit (we'd already seen him twice that day) to share with us the news about his first chimerism test result. 

Chimerism testing is used to monitor the success of stem cell transplantation by evaluating the ratio of donor and recipient DNA in the recipient's blood or bone marrow. He had been tested a few days ago and we were eagerly awaiting the results. The doctor had told me that at this point they would expect a fairly high number maybe as high as 90%. On Thursday night Abby had predicted that her cells would be overachievers. LOL

So the doctor came in, almost vibrating with excitement (he's a Fellow, so it may have been his first time delivering such news). He asked Ollie to guess what his result was out of 100%. Ollie laughed and said, "100%!". The doctor started laughing and said he didn't expect him to guess that and he was actually right!!! Abby's stem cells and DNA have totally taken over his bone marrow already!

Ollie and I were excited and called Daddy and Abby. Abby was so happy at first that she was giddy, and then she cried. Her first tears of joy. Following in her mama's often watery footsteps. Mario was visibly shaken and asked a million questions. He was in disbelief. Then he kept wiping his eyes. I really wish Ollie could have actually seen their reaction and not just heard it.

Fast forward to 3 am Saturday morning. Fever. And worse yet, when they tried to take blood for blood cultures, his PICC line wasn't working. It had been finicky for days. They tried to clean it out with Alteplase (this had worked a few days ago and several times at CHEO). This time it didn't work. At 5 am they told me he'd need to have an x-ray.

They brought their portable x-ray machine to his room and after a short battle we managed to coax him into cooperating.

The line had somehow shifted and was no longer going into his heart, so no blood return. They would have to fix or replace it under general anesthesia. They could still use it as an IV in.the meantime though, so they reconnected his lines at about 7 am and tried to catch up on the several meds he'd missed including his very important anti-rejection drugs, Methylphenidate (MMF) and Tacrolimus.

Because he had the fever, they still needed to get blood, so an IV would be needed. The Vein Access Team (VAT) was called. Ollie was a complete bear given how many times he'd been woken up unpleasantly that morning. He refused to cooperate no matter what we did. The VAT team talked to the doctors and left. A while later the doctors came by and told me there really was no other choice. They wouldn't take him into the operating room to fix the PICC until they ruled out an infection because they didn't want to infect the line and have to take it out (again...as same hastened at CHEO on March and we had to take PICC #2 or due to infection). Once they got blood it would take 2-3 days after to see if the cultures grew any bacteria. 

He still needs his central line for a few months for regular bloodwork and in case he was to have any complications like Graft Versus Host Disease which can still happen after engraftment.

So the VAT team came back. Again no cooperation. They left and promised to come back in an hour. I called Abby and Mario and all three of us worked on him, reminding him that he's succeeding and can't sabotage that when we can see the light at the end of the tunnel. He was not happy, but eventually agreed to do it.

The VAT team came a third time and this time with a little help from Atavan and lots of patience from the two VAT team members, his nurse and I, we got the ultrasounds of his veins and the insertion of the IV in his chosen place done. 

As usual, we progress and still encounter little bumps in the road as we move forward. On a final positive note, this afternoon Ollie's white blood cell count was 8.1 (normal is between 4 and 11), his platelets were way up at 184 (150 to 450 per microlitre is normal) and his neutrophils skyrocketed to 6.7 (yesterday they were 2.26, so way above neutropenic level.of 0.5). So his immune system is functioning like he is a healthy, normal boy. He just happens to have his sister's stem cells and DNA making that happen! We're so grateful that he let her win this battle and that our determined little overachiever' s cells got it done. 

If he does not have infection, starts eating real food this coming week and can take his meds orally again, he can come back to the condo! We're hoping this can happen before Abby leaves to go back to Ottawa. Stay tuned...

Courageous Counting

While this is a photo of the Sick Kids Hospital Atrium at night from the 8th Floor Family Kitchen in the Bone Marrow Transplant Unit, during the day this space is buzzing and coming up again. Clinics are open, surgeries are happening again and the Atrium is quite busy on weekdays. Unfortunately even here people are oblivious to the need to social distance and many times I've had to ninja around people blocking the path to the doors, elevators, etc. 

My little lymphoma ninja has still not been feeling great these past few days. Still having challenges with nausea, vomiting and diarrhea, although they've played with his meds and reduced all of those symptoms. 

He's had some petechiae (round spots that appear on the skin due to bleeding and often indicate platelets are low), but has not needed more plasma. 

His eyes have been bugging him because they're dry from radiation and his eyelashes have fallen out this time from chemo. Many panics from having eyelashes on his eyeball!

We got him his own ukelele and he's been happily picking away at it.

The Sick Kids clown, A. Leboo has been coming by each week to Beyblade.  I saw him coming into the hospital the other day in his regular clothes and almost didn't recognize him! 

Ollie's face and lips were swollen for a few days from water retention. That's easily fixed with Lasix that they give him in his line to have him pee out the extra fluid. Fluid intake and outtake are closely measured and his weight is taken daily to ensure he doesn't have any fluid imbalance.

He's wanted to snuggle more because he feels so rotten. We keep telling him you have to feel worse to feel better and he's almost there. It's Day +19 today and he's felt rotten most of those days. He's also been more emotional the last few days, having crying episodes over things that normally wouldn't phase him. We're in.the home stretch to feeling better and it's hard to hold it together sometimes, so you just have to let it all out to move on.

He's also had intermittent low grade fevers the last few days. It's freaky because this is also a normal and good sign of grafting, but before now anytime a cancer patient got fever it was considered bad and a sign of infection. They still take blood cultures each time he's feverish just to be sure it's not bacteria or infection, but he's on anti-virals, anti-fungis and immuno-suppressants to keep him from getting sick and rejecting the new stem cells. No sign of Graft Versus Host Disease, either.

Our 13th wedding anniversary was Wednesday. We saw each other for about 25 minutes during our tagging in/out transition in hospital. I got back to the condo and there were some flowers and chocolate as well as cards from Mario and the kids. They can't be brought to the hospital given the risk of fungi so I enjoyed them for a few hours at the condo. I had sent Mario pies. Romance, cancer style. LOL

Music therapy started well this week with Ollie playing guitar, but when he tried to sing, his voice was too hoarse from the mucusitus and he got upset and gave up. 

Toni and I finished the session with his favorite songs, but he was not consoled.

Yesterday Ollie said to me that he wanted to change his Make A Wish (he has chosen to wait until COVID is over to go on a trip to Atlantis Bahamas to swim with the dolphins) to instead give the money they would have spent in the trip to CHEO so that they could get their own Bone Marrow and Stem Cell Transplant Unit so that kids like him wouldn't have to wait for transplants and wouldn't have to move so far from home to get the transplant. He knows we have to stay nearby for at least a month after he does get out of Sick Kids and wishes we could be home instead. So his solution is to make it better and fairer for other kids. 💗

I had to explain that is a beautiful idea and I will absolutely talk to CHEO and everyone necessary to make this happen, but it might take a little while to raise the millions of dollars needed to do this. I LOVE his gigantic heart and belief that everything is possible. I tweeted Alex Munter at CHEO and Make A Wish about this yesterday. Alex was lovely and said to let him know when we're back in Ottawa so we can get together and talk about it. We're going to find a way to get Ollie this wish, even if it takes me years to make it happen. 

I'm also working on a plan with some other moms internationally to raise greater awareness of pediatric Anaplastic Large Cell Lymphoma (ALCL), but I'll share more on that as things solidify. 

Now for some really positive news...his blood counts are going up! On Monday he was only 0.03 for his white blood cell count. This is normally expressed multiplied by 1,000, so his count would really be 300. Your average WBC would be between 4,000 and 11,000 per micrometer of blood. Every day since then it has doubled or better despite the fact that we were tools they may fluctuate up and down at first. Tuesday he was 0.05, Wednesday he was 0.08, Thursday he was 0.26, Friday he was 0.54 and today he is 1.09! 

This means he's starting to have neutrophils and infection fighting ability and MOST IMPORTANTLY it means his new immune system from his amazing sister is starting to work!!! Praise God! 

He's not vomited at all since yesterday afternoon now and this is another sign that the WBC are healing his body. 

It's early days and makes Mario nervous to get too excited about it, but the doctors are really pleased and are talking about moving him out of his isolation room into a regular one in the next few days. I am so relieved and filled with love for everyone and everything right now that I feel like I must be emitting beams of light from my body!

He's sleepy today, but has more energy when he is awake. He's happy, but emotional. I can totally relate, but poor Mario looks at us both like we're complete aliens. LOL

He is really missing Abby. He was emotional when I left the hospital this morning, so I stayed longer to hold him and let him cry. He was upset that Daddy was nervous about him moving to a new room too soon and got mad at his father because he felt Daddy didn't want him to come home as soon as possible. He cried that he really misses his sister and needs to see her sooner and doesn't want her to go back to Ottawa without us. Then he felt bad that he was keeping me there and insisted I go to be with her so she wouldn't be sad, too!

She misses him, too, but is focused on getting ready to go back to school. My dearest friend came to Toronto this week and took her back to school shopping, being as careful as possible to keep her safe. Abby had a blast and got to feel normal for a bit. I don't know what I'd do without selfless people like Sonya and so many of you who have stepped up to help me anytime and with anything we've needed.

It's been a really hard decision for us to send her to school and it's still not 100% made, but it looks like we're going to send her back to Ottawa to stay with dear friends for at least a month until we can come home. If we have to stay in Toronto longer, we'll reevaluate and possibly have fault go up to Ottawa to stay with her, or have Mario go home to be with her and family come to Toronto to help me. I am still hopeful that the path continues to be clear and simple for him so that we can just go home sooner and all be together again.

They've generously offered to have her and we know they'll love her and care for her like their own, but man is it ever hard to let her go. She's staying middle school and I'm consoled at least by the idea that the school is only grades 7 and 8 and not with other elementary nor with high school students who can more easily transmit viruses including COVID.

She desperately needs to get back to normal and routine for her own mental health after three months of COVID and 10 months of cancer turning her life upside down. It's really an impossible choice, but her social worker and psychologists feel despite the risk it would be best for her. So we will embark upon yet another stressful experiment in our life, hopeful that her fear and common sense will keep her distant and safe as much as is possible.

We'll have to figure out how we manage the risk to Ollie when we get home as its not just COVID we have to worry about, but all viruses, bacteria and diseases since all of his immunities and antibodies have been wiped out with the transplant and he'll need to gradually get all of his vaccinations again when it's safe to get them.

So we're all emotional, but good right now. Your prayers are working, so please keep them coming as we're not home, yet but can't wait to be!