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!

The Numbers Game

Monday was day +14. Two weeks of waiting are done. Up to two weeks left to go. When the stem cells start to graft, his blood counts will go up. So it's a numbers game right now. According to his numbers right now, we're still the underdog in this high stakes game. But we expect to come out the victors. Patience.

The last few days have been up and down like a yo-yo. One day no vomiting and limited bowel movements, the next virtually living on the commode with his poor little head in a bowl. They tell us these are generally signs that we're on the right track to grafting. It still sucks. We knew he'd have to be sick again to get well, but man it's hard to see him like this and to be able to do so little to make him feel better. 

It's not like my kid has a little stomach flu. More like every fluid in his body is trying to come out all at once and almost constantly. If they weren't giving him liquid nutrition and fluids by IV constantly I'd think his body might be so dry that he'd crumble like sawdust. And it's exhausting for the parents because you're up and down with him at least hourly so there's no rest. It's really quite amazing how our bodies can keep on going even when were so exhausted physically and mentally.

His central line has been bothering him a lot this week. His skin is so sensitive and they use different cleaning products on his line here than they do at CHEO. We've asked that they use Cavillon next time like they do at CHEO, as apparently it is possible here. Since a different nurse changes his dressing each week here, there is no continuity for them to notice these issues from week to week. At CHEO the Vein Access Team (VAT) does the PICC dressing each week. Basically we usually get one of two of their amazing team members (Lida and Julie, we sure miss you!) and they both know exactly how to do his dressing change to minimize his stress and pain.

He's also never had so many things connected to his lines at once, so they're very heavy and pulling on his arm more than usual. He can't wait to be rid of them.

His toe nails have started to fall off again after the chemo and radiation. It's more annoying than painful, but one more thing that he has to bear. He stressed about them and his fingernails falling off, so we've learned to use pieces of stretchy physio tape on them that sticks to itself and still allows skin to breathe. This way he doesn't fear tearing the nails off painfully by accident.

He had one day this weekend where he was hungry and he begged us for a pizza lunchmate. Thank goodness for Instacart! He tried it and like the many other things he's tried recently (pretzels, tortillas, hummus, pb&j sandwich, hot dog, etc.), he quickly spat it out because it didn't taste right. Chemo and radiation do a real number on your taste buds and who knows how long it will be before things taste good for him again. 

He's also gotten more plasma and blood transfusions over the past 4 days. More fluids that his body desperately needs and soaks up like a sponge. You can literally see the life coming back into his pale form as his cheeks flush a beautiful pink after each lifesaving dose.

Abby and I spent a bit of extra time together this weekend while Mario and Ollie were at the hospital. She's been interested in going to the Bata Shoe Museum to fuel her shoe fetish. I figured since it was a long weekend and people in Toronto were more likely to be at a cottage than a shoe museum, it might be a relatively safe place to take her Saturday. 

There were honestly only 7 other people visiting the museum at the same time and two staff present. No problem social distancing at all! We simply used hand sanitizer anytime we touched a door.

It was strangely fascinating, even though I'm not that into shoes, but I AM into my daughter and I love history.

I sent this quote to Mario. He replied that it should read, " A man is what his wife drives him to." He still makes me laugh after 16 years together and 13 years of marriage (or it will be on August 5th). I hope our 14th year married is way less eventful than the 13th has been. I am still grateful daily that we're doing this together, though. 

Ultimately, no new super exciting news, yet. Just more waiting and praying that he feels better tomorrow and grafts this week. Thanks for hanging in there and waiting with us.