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.
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...
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