Fortitude and Double Digits

The last few days have been a bit harder for Ollie, but as usual he's faced them head on and come out the other side. 

Although nausea, vomiting and diarrhea are not uncommon during this part of the post-transplant process, his has been a bit more persistent than most. The nausea and vomiting are mainly from the mucusitus that he has once again from chemo. Thankfully the painful sores in his mouth have been limited to just one so far, but they can be present anywhere in your gastro-intestinal tract and they suspect he has more given the frequency of throwing up and bowel movements over the last 3 days. 

We are also pretty certain that the diarrhea is mainly due to the antibiotics, although there is a small chance that they've given him a c difficile infection. As a result they held one of the antibiotics yesterday and sent a sample to the lab to rule out c difficile or any other infection. Today he's gone only twice versus every half hour, so we're moving in the right direction. 

They're also helping him to stay more comfortable on anti-nausea meds (Ondanzatron or a cousin of it, Navalone, Gravol and Atavan) round the clock. That works most of the time. When it doesn't, Ollie bears down and deals with the challenge and minutes later is ready to move on to something more entertaining. Tuesday he was making slime with the Child Life Specialist.

Later that day he got his first Intravenous Immunoglobulin (IVIg)
 transfusion. Essentially when you donate blood you're also donating immunoglobulin which is part of your blood's plasma. It can be separated out and then given to immuno-compromised people like Ollie to help strengthen their immune system and fight infections. He'll get this at least once a month for the next handful or more of months while his new immune system is being established and given he'll have no antibodies or immunities to anything since those are all wiped out for transplant. 

Once again I owe an immeasurable debt of gratitude to perfect and generous strangers who are saving my precious son's life simply by taking an hour out of their busy schedules and giving a pint/half litre of their blood. It really is "in you to give."

Last week we were also contacted by the Phoebe Rose Rocks Foundation who had seen my tweets about the blog and Ollie's stem cell transplant and told us they'd like to send us something to help. Phoebe Rose was a brave leukemia warrior who had a rare cancer and had to move away multiple times to seek cancer treatment, including a bone marrow transplant. After she passed at 5 years of age her family started the foundation to help families like ours with expenses related to having to travel far from home to seek treatment. 

They sent us a generous package of gift cards with a beautiful note of hope and also told us that they love the Ollie Pizza! So this is yet another worthy and kind organization helping families like ours through unthinkable challenges related to cancer and one worthy of your consideration for your annual charitable donations.

Yesterday Ollie was thrilled to have music therapy. He had just been throwing up mucus minutes before the session started, yet was adamant he was okay to go ahead with it. Toni is a full time music therapist at Sick Kids Hospital. Based on what I saw, she's worth every penny they pay her and EVERY hospital should have music therapists! 

She asked what kind of music experience we had and was happy to learn that I used to play piano and French horn, Abby and Ollie were taking piano lessons and Abby had done a year of guitar and Ollie tried a music camp where he played the drums. 

She brought a cart piled high with interesting and somewhat exotic instruments. Each one was lovingly wiped down before bringing them in. Ollie couldn't wait to feel what she brought. I was pretty excited to see them all, too. A ukulele, a xylophone, bongo drums, a tamboa, an ocean drum, maracas, and a guitar were lovingly tried by Ollie. We each got to pick an instrument and Ollie lead off with a rhythm and we just tried to add to it with our chosen instruments. 

We actually sounded pretty good! At one point Ollie had me play a few songs from his play list and we tried to accompany it. 

I was so pleased with how things went and thanked her profusely at the end. Ollie had told her all about his Bye Bye Lymphoma playlist and how it got him through hard things like radiation. She told me he's exactly the kind of kid that she started doing this for and she wished there were more parents who understood how therapeutic music was and how it could transform mood, energy and overall mental health for patients like Ollie. 

She seemed surprised that CHEO didn't offer this therapy, but I am pretty certain they don't and will be encouraging them to consider adding this. For once something that Sick Kids does better than CHEO! 😜

Ollie adores singing and always sings along when he plays piano, so these instruments were no exception either. Toni was thrilled with how he loved to sing and with how enthusiastic he was. Next week she's going to bring her guitar back and be prepared to play some of his favourites for her to accompany his singing.

Meanwhile, Abby is busy building an empire for her Barbies! 😀 She's been planning and crafting rooms and furniture for the Barbies as an art summer project. 

I love how she plans everything out to the tiniest detail and enlists Daddy's help when she needs help with the furniture manufacturing. He loves projects like this, too. 

She's doing well, but eager to get back to school and her regularly scheduled life. She and Mario had an online session with the psychology team this week and she's also scheduled a chat online tomorrow with the Child Life Specialist dedicated to helping with siblings of transplant patients.

She and I are enjoying our time together every day when Mario goes up to visit with Ollie. It's so much better than previous times we've been in hospital when we didn't get to see both kids each day. 

Today Ollie had an ECG to verify that the medications and transplant haven't affected his heart. 

Ollie loves to be silly when the nurse practitioner and doctor come to see him on rounds. They are pleased with his progress, his overall attitude and his energy level. 

While Ollie napped today, the Fred the Chaplain stopped by for a visit. He had come by last week to introduce himself and offer the support of spiritual services. This was part of the follow up from our meeting with the Pediatric Advanced Care team last week as well. Fred is a kind man who practices the Christian faith, but is also well-versed in mindfulness. We have had interesting discussions about faith and how it has shaped our path to wellness to-date. 

A. Leboo (one of the Sick Kids Hospital clowns)  came again today, toting his Beyblades! He told Ollie he had taken them apart to sanitize them, but didn't know how they went back together! Ollie was up to the task and spent time schooling him on right versus left spinning Beys as well as what the different tips did and what types of Beyblades each was. It was another great distraction for him. At no time so far has Ollie told me he's bored or tired of being in the room. With Day +10 under our belts we're in the double digits now and should start to see his counts start increasing in a few days between week 2 and 3 to show Abby's stem cells have grafted. 

Today Ollie's isolation teenage neighbour got out of his room after transplant and you could see the joyous look of freedom on his face. I can't wait to see that in Ollie's face!

Blessedly Boring/Normal

DAY +7...One week ago today Ollie had a stem cell transplant. The time is actually passing by pretty quickly!

Ollie has charmed the nurses and doctors and convinced them to let him help to take his own vital signs. LOL. So now he knows how to use a stethoscope, take his own blood pressure, take his temperature and his pulse. School of life indeed...

This guy has honestly been a total trooper. He's been amazingly positive and patient. Not feeling cooped up or tortured at all. 

I honestly had been worried that mentally and physically this time would be hard for him. In his clinic visits three weeks ago he had been angry and difficult. But in all fairness he was still on the Dexamethasone steroid and was scared about having to be back in hospital. As a side note since stopping the Dex and having more radiation and chemo with no appetite, he's lost about 5 kilograms (about 11 pounds). He had gained so much unnecessary weight on the drugs before, but we are grateful for that extra weight right now so he's not all skin and bones the way he was when he was in ICU and didn't eat for 17 days.

Prior to transplant he likely also picked up on the anxiety that the rest of us had been feeling about the possibility of him relapsing before getting the transplant. Now we're all pretty relaxed in comparison and that's bound to rub off on him, too.

His days have been surprisingly full. Like our time at CHEO, there are many experts and services coming and going daily and they all seem to come at the same time! 🕑

He had a super fun visit with one of Sick Kids' clowns the other day! A. Leboo came to see him and said he had heard that there was a friend of Molly Penny's (the beloved CHEO clown who is also in our mast head photo on this blog) at Sick Kids and any friend of Molly Penny's was a friend of his! He had a fun chat with Ollie about things he liked to do and naturally that lead into a long and technical discussion about Beyblades. A. Leboo listened enraptured and promised to come back another day and play with Ollie. Sick Kids has a television channel and their clowns and child life team broadcast programming live several times a day, so he encouraged Ollie to call in and win a prize one day soon.

His sleep cycles are getting more regular now, too. He still sometimes has a late afternoon nap, but sleeps all night other than getting up a couple of times to go to the bathroom. 

He has had bouts of diarrhea, but this is normal for him during and post- chemo and apparently normal while undergoing transplant and not eating much solid food. 

He's also started to get the typical post-chemo mucusitus mouth sores again, so they'll monitor his pain over the next few days and give him morphine as needed. At about this time they're looking for possible fevers again which may be a sign of Graft Versus Host Disease (GVHD) and Tylenol can mask fevers. I do still find it bizarre that there is nothing pediatric cancer patients can take for pain between Tylenol and Morphine.

He's also experiencing some preliminary skin issues post-chemo. Fortunately we've seen this before and knew exactly what we needed to ask for. 

The CriticAid and Triad Hydrophilic Wound Dressing are fixing him right up and no more pain under his underarm. 

This stuff is magic...it was the solution we used last time when his skin was sloughing off of his body and he had burns from the medical tape combined with chemo. And you can actually buy it on Amazon...

Overall his energy level is good. He wants to get up and sit in the chair, play, march on the spot and do sit stands when he feels well enough. Physio came by to encourage exercise, but unlike CHEO they just come when there's an issue as opposed to proactively seeing the patient weekly to encourage and monitor progress or deconditioning. Thank goodness we already have an exercise plan from working virtually with his outpatient physiotherapist, Allison.

On Thursday and Saturday nights Mario spent the night with Ollie to give them and Abby and I more time together. She's been interested in seeing more of Toronto since most of the times we've been here were to visit family or just quick stops on the way through en route to see my family in Southwestern Ontario. 

So Saturday late afternoon after the heat dissipated a bit, she and I walked down to the CN Tower and back (about 5 km round trip). It was fun to play tourist and see the sights on the way, like Roy Thompson Hall.

On the way we walked along Canada's Walk of Fame. It was a cool way to teach Abby about some Canadian Greats. We also saw the theatre where Come From Away was staged pre-COVID. We hope to get back to see it or maybe see it at the NAC when the rescheduled production comes to Ottawa finally.

We walked by the Rogers Centre. It was pretty quiet there.

On the way back we popped into Union Station to see the beautifully restored main hall. I spent so many hours here in University waiting for trains back and forth to Chatham. It feels like a million years ago.

Beyblades and Lego continue to occupy time in hospital and entertain Ollie. He's especially good at trash talking Mom and Dad when they are opposing him in battle. Justified since he always wins I guess.

He still gets mad at me for being the big bad cancer mom who makes him do all of the cancer things...

But there are beautiful moments when I know he understands all that we are doing to save him.

Music therapy hasn't officially started yet, but he was excited to tickle the ivories. To my great surprise he even remembered the first few songs that his patience personified piano teacher (and family friend) Lucie taught him and just like before cancer he delighted in playing and singing at the same time. He had no problem finding the keys and begged to learn new material. Music therapy is going to be awesome!

Today his counts were quite low, which is normal post-radiation, -chemo and -transplant. So he had a plasma transfusion...

And a blood transfusion and was pretty tired after, but bouncing back tonight. One of the most beautiful and lifesaving gifts you can give to a cancer family like ours is to donate blood products or get swabbed to join the bone marrow/stem cell registry. Both take a small amount of time and it means everything when your child needs these lifesaving gifts. For more information, please visit blood.ca. 

That's it for us right now. Blessedly normal and typical. I've never been so relieved to be normal and boring in my entire life. Stay tuned...

We'll take all of the therapies!

Days +2 and +3 have been good. Ollie has been in good spirits and chatting away happily to all of the nurses who are in and out of his room. Three weeks ago I was convinced that being cooped up in a room like this was going to be a nightmare. Now, although I know we've only been admitted for a week on Friday so far, I can see he's going to make the best of it.

He's still experiencing some nausea, so they're trying to keep him comfortable with meds, but it also means he's not eating much. The TPN liquid nutrition is helping to give him the energy he needs to feel well while the stem cells are battling his body for possession. 

We've all been sleeping better the last two nights. We're starting to settle into a new normal and are more relaxed now that he's gotten the transplant and all we can do is stay calm and wait for them to graft.

On Wednesday Mario and I had a meeting with the Pediatric Advanced Care (PAC) Team while the Child Life Specialist, Maddie visited with Ollie. Like the palliative care team at CHEO, this team supports families, not just at end of life, but through any difficulties. Given they knew how challenging Ollie's path has been, that we're far from home and I've requested consults with social work, psychology, physiotherapy and virtually any other therapy they can give us to help us physically and mentally, they reached out to see how we're doing and what they can do for us. 

Essentially they told us we were doing a "remarkable" job under incredibly difficult circumstances and they gave us kudos saying that many of their patient families come to them with few coping mechanisms and they generally spend a lot of time helping them develop some. In our case, they've suggested we continue to take advantage of the social work and psychology services and suggested we try Art and Music therapies to keep Ollie busy and positive.

Today he had art therapy! I am not one who typically enjoys arts and crafts (that's more Mario's speed with the kids), but I've got to say, it was fun! He got to use modeling clay and make whatever he wanted. Naturally he made Beyblades. LOL We'll show you the finished product next week when they've hardened and he paints them. He'll have an art therapy session every Thursday. And tonight the music therapist stopped by to drop off a full size keyboard/portable piano for him (Sherri and Lucie, maybe he will be the next Stevie Wonder or Ray Charles!)! He'll start music therapy Monday and can also choose to learn other instruments (Allie, and cousin Cadence he's keen to learn Ukulele because of you!). What a phenomenal way to spend time in the hospital (although our poor neighbour, Zach and his mom may not be as thrilled)!

Thursday was another day of chemo. This may seem counterintuitive given he already had some before transplant, but it ensures that there remains "room" in his bone marrow for her new stem cells to take root and graft. He'll also get the Psyclophosphate chemo again tomorrow.

His platelets were also low (22), so he got a plasma transfusion to enable his body to continue grafting. As always I was grateful for yet another life saving gift some beautiful and generous person gave him.

I also learned today that there are different charts for who you can give and receive blood vs.plasma from. Typically as an A+, Ollie can't get AB+ blood (they stripped Abby's B cells out of her stem cells so they wouldn't be rejected by Ollie given she's AB+). But the rules for plasma are different and he can get plasma from ANY other type with his blood type. He got AB+ plasma today, so another kind soul with Abby's same blood type saved him, too. 

The Chaplain also paid Ollie and I a visit today based on our conversation with PAC about the role that our faith was playing in our day to day management of stress and how it has been enabling us to stay hopeful even on really bad days. 

Mario came tonight to stay overnight and give me a night away from the hospital. As always it's nice to get a break and to spend time with Abby, but it's always hard not to be with him. In the photo above taken just outside of 8B (which is the Bone Marrow Transplant Unit), if you count buildings on the left, the first is the wing where Ollie's room is at Sick Kids, and two buildings down from there is our condo. So I am comforted knowing that were sleeping just a short walk from each other and I could be there in less than 5 minutes if needed.

We're trying to inject a bit more summer fun into Abby's days to keep her positive. So she and I went down to the terrace to get her some fresh air and bbq dinner. It was really windy so we took silly selfies.

I am deliriously happy to report that the first three days post-transplant, when I was worried about fever and him feeling super ill post-radiation and chemo have been bearable and less difficult than I thought they'd be. 

Onward and upward to health and wellness!

Day 0 (Transplant Day) and Day +1

Transplant Day, also known as Day 0! 

Ollie was in good spirits on Monday, July 20, 2020, which we'll hereafter always think of as his transplant birthday. It's a new birthday to celebrate because it is a rebirth. Physically his body is being regenerated with his sister's cells. He gets a second chance that many will never get and today we are very aware of this and also doing it for those who became angels far too soon like our friend little Malcolm.

With apologies to my friends in science and medicine for my simple explanation that follows...

When Ollie's new stem cells graft and his sister's cells take over in his bone marrow he'll actually have her DNA in his blood! His cheek swab DNA will be different though. When you have two types of DNA in your body it is called a chimera. They will do chimerism tests on Ollie over the next 3 weeks and after as needed to see how much of his stem cells vs. Abby's are present to determine when he's fully grafted.

He'll also likely have her blood type eventually and his XY chromosomes will likely appear as XX because she is female as he is getting her cells. He'll still be all male, but the science of this is wild! It's like an episode of CSI!

We weren't sure we'd ever get here despite our positivity and focus on this goal. Statistically, after relapsing in his central nervous system (CNS) twice it was more likely that he wouldn't get here, but as always our determined boy beat the odds and made it back.

Dr. Alexander, who is Ollie's oncologist here at Sick Kids and treated us when he relapsed last time, stopped in to say hello yesterday before the transplant. I teased her that we were happy to see her and happy not to have seen her before today this time! Last time we saw her I told her I didn't care what the statistics say and not to count Ollie out because she didn't know how strong and stubborn my boy was and we'd be back. I could see on her face that she was remembering that conversation and was genuinely happy that he made it back. 

Maybe he'll restore some of her hope for the kids she treats. She's an excellent doctor and very caring, she just has a tough job being the expert in pediatric Anaplastic Large Cell Lymphoma (ALCL) in Canada and she sees the worst cases, Ollie included. That has got to make you a bit more sceptical about their likelihood of survival. It was kind of her to stop in and wish us well. 

About mid-morning we were moved from his regular hospital room into one of the isolation rooms in the Bone Marrow Transplant (BMT) Unit. 

The isolation rooms for bone marrow and stem cell transplants are small! Maybe 11' x 11' with a sink, but no actual bathroom. This is apparently a 1990s design throw back, which they now regret. Because there are no bathrooms in the rooms and no HEPA system in hallways and the rest of the unit, patients are basically in this "cell" until they've grafted. 

Sick Kids is planning a brand new stem cell and bone marrow transplant unit in their yet to be built Peter Gilgan Centre that is expected in 2029. In the new one they apparently plan to ensure that the entire unit has HEPA and will enable patients to move more. The physiotherapist already came to see us today about keeping him moving in this tiny space so that his body doesn't become deconditioned. We've worked too hard the last few months via virtual physiotherapy to get him strong again and don't want to go backwards.

Two isolation rooms are attached to a common clean room. You enter the clean room and wipe anything down you are taking in with antibacterial wipes and use hand sanitizer each and every time you step in or out of the room. Yesterday I am certain I used hand sanitizer about 50 times and washed my hands about every hour. No exaggeration.

There is a parent lounge with a shared fridge (in the regular rooms you have your own mini fridge, but not in isolation). At least this is now open after COVID restrictions are loosening up somewhat, but only one person allowed in the kitchen at a time.

Abby's cells were frozen due to COVID and a preservative was added to keep the cells alive. For the transplant they had to be thawed and timed perfectly. It still cracks me up that they deliver them in a beer cooler.

Here is half of her beautiful gift to her brother and all of us. The other half remains frozen and at the ready if he doesn't graft this time. In that situation, one month from now he'd get the second half, so really if needed (and we hope it's not) we DO have another second chance at this transplant. For those of you who didn't follow us back in March or missed it, you can read about Abby's donation of stem cells here or watch her video here.

They gave Ollie Benadryl and Tylenol 30 minutes before transplant to avoid any allergic reaction to the preservative. 

I thought I'd be more emotional and weepy when he got them, but I honestly just felt so relieved and happy that this day had actually come. 

We video chatted with Abby while it was happening so she could be part of it, too. 

It was a bit anticlimactic as the transplant doctors promised. Just like a blood transfusion and took about 20 minutes. We all sighed in relief when it was done as it's been 4 and a half long and scary months since we first heard he was going to need a transplant and so many big challenges to overcome to get here (not the least of which were relapse, using Abby's cells instead of a perfect anonymous donor match and COVID-19).

Ollie didn't have an allergic reaction, but his gag reflex kicked in when he could taste the preservative in the back of his throat as the transplant happened and he threw up. 

His blood pressure was also a bit low, but they chalked it up to the Benadryl and transplant and within the first hour it came back up. This is nothing compared to watching your child fight to survive in ICU. 

After that he was okay and just sleepy.

The view from our room shows the construction zone for the new Sick Kids Patient Services Centre. Thankfully it's quiet despite that and at least we get some natural light every day.

Abby has insisted on marking the occasion (as she does all celebrations) with cake, so I left one mini cake at home for her and Mario and took one to the hospital for us. Unfortunately Ollie was too nauseous, so I ate a piece for both of us! 

Today is Day +1. Ollie has been in good spirits, although has been nauseous off and on all day. It's hard to know if this is due to transplant or a side effect of the radiation and chemo this week. His little body has been through a lot. Thankfully a new Beyblade that he opened today (a Takara Tomy made Union Achilles for those of Ollie's friends who are following along and will be asking) kept him pretty happy despite not feeling 100%.

He slept a lot less today, but couldn't eat much so they've started him on Total Parenteral Nutrition (TPN) where they give him necessary nutrients through his line directly into his vein. Part of the reason he doesn't want to eat is nothing tastes right after radiation and chemo and he's now somewhat afraid that he'll throw up anything he tries.

His pump now looks twice as large and scarier. This is a short term bridge until his nausea passes and he can eat more. In the meantime we'll keep offering him solid foods and hope that in the next few days we'll no longer need the TPN. He's never had it before as the last time he should have when he was in ICU and so sick, he had 

Syndrome of inappropriate antidiuretic hormone secretion (SIADH) where he was retaining water and his sodium levels were crazy and being heavily controlled, so they couldn't give him the TPN for fear of causing other issues and he didn't actually eat anything in 17 days. That was scary. 

We have worked out that I'll stay with Ollie most of the evenings because Mario seem has to work by day from home and 2 nights a week Mario will stay overnight to give me more time with Abby. .

In the meantime he comes up late in the afternoon each day for a few hours and I've been going to the condo to have dinner with Abby and maybe take a walk or sit outside on the terrace (far away from others) that they have in our building

Abby likes to do gymnastics there in the play area as it has a rubber ground cover. And then she super sanitizes her hands. 

So far so good. Other than the nausea he is well, no fever (although they tell us this is highly likely sometime in the first three days post-transplant). On day +4 he'll get more chemo to make absolutely certain that his cells are no longer kicking out those lymphoma cells. They also give him another med that ensures hers continue to graft. More on this when we get there!