Lovingheart

A mom here at RMH has her teenager with her and her young baby in the hospital.  She has been struggling to spend time with the baby because the teenager doesn't want long periods sitting at the hospital. We just found out about and signed an agreement that allows us more freedom.  She can leave her teenager here and go visit the baby as long as I am in the building.  And the other way around that I don't have to drag Marlon out with me.  To be fair, Marlon is at the point where he has the strength and stamina to walk more but it's good to know the agreement is in place.  Reconstructing the concrete bench after Pan the dog ran into it and walked away unscathed.  After that Marlon decided he is immortal.  A pic from a year ago.  We haven't seen the dogs in two months.

Another hospital visit.  Nothing much happening.  His mouth has been sensitive from medication but still most of them are weaning.  Just a slow process.  We have been having issues with the laptop and his school account.   I also took a long time switching out our phone plan.  I drive my kids a batty because I go for the cheapest plan so we switch service providers fairly regularly.  Hopefully we don't change for at least a year now. The skyline in Toronto really is something else.

So many individuals.  So much variety.  We are all imperfect humans.  But when I see the different shapes and sizes, the faces, I like to hope we are all doing our best.  If I feel a criticism towards anyone else, I wonder how I could even deign to think that way.  But somehow I can't give myself permission to accept myself.  It can be hard to live with my thoughts. But then I look around and try to remember, we are living our lives in our own way. I have so many pictures of mushrooms.  How interesting that mushrooms are more closely related to animals (humans) than they are plants.

Marlon was marveling yet again at the lack of clarity in his course.  He was saying they didn't say what kind of examples they wanted. My response: “It's math, just assume you should do more.” He shakes his hands, raises his voice, and animatedly says, “This is math.  You shouldn't have to assume anything.” I think he has a point there. There are times when he is the one making the mistake, and then he realizes he was temporarily lost. One of my favourite fall pictures from many years ago.

Yesterday we were out walking in the rain.  People commented about the dreary weather.  Marlon welcomes the rain.  He has never been one to enjoy the heat and now less than ever.  He is quite happy with the wet weather.  I was saying he'd be good living in the UK. I have come to appreciate all the weather.  I like those hot muggy days when you step outside and the air is thick.  Having the dogs and getting outside even on the bitterly cold days has increased my appreciation of the variety.

Marlon had high hopes for the online school courses he is working on. TVO.  He felt that being Ontario wide there ought to be some education and consistency. He doesn't feel like he is learning very much and what is expected isn't clear. Hospital visit today but nothing new.  Again just monitoring to make sure the GVHD doesn't start up again as the level of steroids decrease. This time of year, I am often finding interesting mushrooms on my walks.  Not this year in the city.

  September 24, 2025 Interesting to see the variety of families that spend time at the RMH.  Sometimes separated parents will temporarily reunite to make it work for the children.  If you have more than one young child it would be hard to do without extra help. The stays at the home vary from days to more than a year.  Everyone does what they can. A meaningful picture from the shared kitchen space of the BMT ward.  

Uneventful days…   When it's not a hospital day, I flush the PICC line. Use a syringe to push through a saline solution and then another with heparin which helps to ensure the lines don't get blocked. Hospital days, the line gets flushed by the nurse that draws blood.   Tuesdays a nurse comes to the house and changes the dressing. Fire alarm testing in the building so there were some loud alarms sporadically through the first half of the day. I was surprised to see this still alive on a tree.

A hospital visit today.  Luckily there isn't too much happening.  Check blood levels, and continue to lower the dose of the steroids.  This is a very gradual weaning to ensure the GVHD doesn't return. He's been working on two online courses and had an issue logging in today.  He was able to do work as a guest but he had completed a unit assignment and that may be lost.  Several hours of work.  Some of it can be recovered. Realistically it should be “an unit” but that really does not sound right.  Seems to be a common query.  I'll stick with “a unit”. This is his heel.  Carefully peeled off last night. Almost a month now since the GVHD started and understandable why his feet were so very sore.  Luckily the pain has been gone for over two weeks.

Lucky that the rain waited until evening to pour down and nice to see a real soaker.  It was the fall fair back home.  Hoping it was a successful weekend. After our walk today Marlon and I drove around the parking garage to give the car some movement.  It hasn't moved in almost two months. We stopped to admire the fire water fountain.

We have been playing ping pong every day.  When Marlon was still in the hospital, I wondered who would play with him.  I am not terribly coordinated and knew playing with me would not satisfy him. I am surprised to notice I am improving.  That has not been my experience with sports or games.  I played volleyball, pool, Frisbee, and darts when younger and never got any better.  I still mess up plenty with ping pong but we can get  decent rallies going.  Marlon is taking it easy on me. Ever so often we have little helpers that change the speed of the game.  We spend a lot more time chasing after the ball. Almost completely peeled.

A few days without a hospital visit.  His feet have peeled a lot but there is still more to go.  Soaking didn't really change anything.   All is well. Doing some school work, going for walks even though his feet are tender, playing ping pong, and computer time… The last of the designs.

In Marlon's English course, he is expected to write and then present something he is passionate about.  For his previous courses he created a persona, to get through what was expected of him, pretending to care about things he didn't really. I have heard him speak passionately about school, and his dislike, and the lack of clarity. And it gets me thinking about the education system and wondering how it is keeping up with technology.  Calculators do the math, computers check spelling and help with grammar, AI gives ideas and writes the stories.  Do these take away from our ability to think or create space for thought?! The rocking bird on the third floor.

Blood counts at the hospital again.  His neutrophils and white blood count, which used to be so low, are now high, but that is because of the steroids. Overall his counts are good.  They continue to watch, mostly just keeping an eye on the GVHD to make sure it is well under control. He just said that once the layer of skin from his feet is fully peeled, he'll be a millimeter shorter.  Walking is going well considering the fresh skin is sensitive.  Each floor has a set of unique wooden rocking creatures.

A Chimera is a Greek mythological beast with a lion's Head, goat's body, and a serpent's tail. In transplant they use the term chimerism.  They do a check post transplant to determine whose DNA the recipient has. The results have come back from Marlon's blood test which they did on day 22.  100% donor cells.  This is a very good sign and bodes well for continued health. His immune system continues to be suppressed to make sure nothing changes back but it definitely feels that the worst is behind him. Pretty shocking but getting rid of the old…

There have been so many drugs involved in this process.  It is mind boggling.  They started steroids to combat the GVHD.  Steroids are helpful but bring along a load of side effects that require more drugs.  They are slowly weaning off the steroids to make sure he doesn't get more rashes.  Each week there are fewer drugs. When we played ping pong today he had a paddle in each hand which gave him a greater challenge.  Hitting left- and right- handed consecutively.  We had a little boy (3 or younger) wanting to play along so we fit him into our game.  He could “ serve” - throw the ball across the table.  He used the paddle to push the ball around.  He was very upset when his dad said it was time to go. This building was glowing pink as it was catching the morning sunlight.

I was talking with another mom today who really misses her life back home.  In a weird sort of way, I am having a holiday from my everyday life.  I miss the dogs.  I miss some other things but I don't miss my home life and I feel wrong.  I find happiness wherever I am.  I don't know. The last person a teenager wants to be stuck with is their parent.  He has had enough of me.  We played ping pong (I am hoping this will be a regular thing) and I smile and laugh at silly moves and he never cracks a smile. We make sure to get plenty of time apart. It looks so painful and uncomfortable.  The smaller toes are just sensitive skin now.  A process.

Quick hospital visit for blood work.  Shortest visit we've had yet.  They sent off the blood, determined the doctor didn't need to see Marlon, and they said come back Monday. I swept the room today and we were both surprised (but not really) at the amount of “dust” that accumulated in a couple of days.  As the rash is healing his skin is flaking and peeling as if it was a sunburn. A stone ping pong table.  Marlon has played on various surfaces but said this one was completely different.

Dragged Marlon out for a walk this morning.  Even though the skin on his toes is peeling from where the rash was, he is still able to walk a bit more. I want to take him down to the water and the island but that is a bit more of a walk than he is up for.  And he doesn't really care.  For English he has to write and then speak about something he is passionate about.  I laughed and suggested online schooling and unclear questions.  He does not show much passion for anything but about school he can have a lot to say. He gets frustrated when a question is phrased in such a way that it can have different answers but one is expected.  He can be quite expressive. Not the water around here but the peace and tranquility…

We both slept in this morning.  I didn't sleep much at night either.  A real mix of people at the RMH.  Some families from the east coast.  Spoke with someone today from Northwest Territory.  These families have their lives put on hold.  Some not able to go home for the duration of treatment, whatever that might be.  What a gift to have the RMH house and the many amenities. Sometimes it is the patients or maybe just their siblings but to see the play and hear the shrieks of joy, it is good for the soul.  The families share smiles and support each other.  The red is the second floor, orange third and the lighter orange is the fourth.

Hospital visit for blood work this morning.  There is a drug called tacrolimus that is important for stem cell transplants.  It helps the new and old cells get along.  This is one level they check regularly along with his other levels which are doing very well. Marlon saw his primary doctor today.  He was joking that he had his first vacation in seven months and that was when Marlon ended up back in the hospital. A few spots of rash left on his hands, otherwise it's all cleared up. More sidewalk decorations for sick kids 150th year celebration 

I wonder if there is something about these transplants that affect sleep.  I heard the doctors mention that some have their sleep schedule messed up by sleeping off hours and not getting outside.  We kept daytime hours and had lights out by a certain time.  After having always been a good sleeper, unless he had a reason not to, Marlon is struggling with sleep.  He is tired.  Lights out by 11 but it takes him hours to fall asleep.   A nurse came to the RMH to charge his dressing.  Now that he isn't going to the hospital as much, we will have a nurse coming weekly to change it.  It is my job to flush the PICC lines daily to keep them clean and flowing. We sat at a different bench and had a different squirrel nearby.  When we noticed him we both grabbed our phone and took pix.

All sorts of little things to make up the day.  Marlon is starting his semester.  He already completed one credit this summer before transplant and today he started math.  He also has English geared up ready to go. There is a school at the RMH.  A couple of small rooms for the younger grades that have school time 9am-3pm.  Marlon’s time in the high school room is 1-2 pm daily.  There is a person available to help him with any questions he may have.   During that time I can leave the building. The only time I can without him. In the afternoon, I bought Marlon a new pair of shoes. With his feet feeling so sensitive and his shoes being well worn, it was time. Hopefully walking will be more comfortable for him. The squirrel was chewing its breakfast while we were having ours.

So far sleeping at the RMH has not been good.  We are both tossing and turning.  Hopefully we will get used to it. Marlon had an appointment at the hospital just to check blood levels of tacrolimus.  This is one of the drugs that supports the body in adjusting to the change in cells.  Again it is such an eye opener to meet others that are going through treatment.  An eight year old with a brain tumour who has endured high dose chemotherapy, surgery, and will have three stem cell transplants.   Marlon has found colour can be comforting so we bought colour cards.

Discharged. Back at the RMH again. Still sensitive hands, feet, and mouth but overall much improved. I couldn't fall asleep last night so I left the hospital and it was after 230 by the time I finally fell asleep in the bed at the RMH.  Apparently Marlon woke up shortly after I left and didn't sleep great either.  At least we won't have the lights and noise of the hospital tonight. Marlon’s aunt Pamela showed up.  She was driving from London and in the end it took her four hours.  Traffic on the weekend.   We enjoyed a nice dinner together though afterwards Pamela was feeling off.  She had to lay down for a while until she recovered.  Marlon was impressed by this license plate.  

The beginning of April when Marlon had swollen glands, I thought he had mono.  Even the doctor thought so (  https://www.lovingheart.ca/2025/04/april-14-2025.html ) Mononucleosis is a symptom of the Epstein-Barr virus. We soon figured out it was more serious than that. Yesterday we were informed that some tests that came back positive for EBV.  It isn't serious and is something that often lies dormant.  While he is immune compromised they are watching the levels. Otherwise he is much better.  Hands and feet are still sensitive. This was the rash on his front. His whole upper body was like that, even worse in places. Now it is mostly clear.

Those darn steroids.  He needs them to help with the GVHD but they have their own side effects.  High blood pressure.  I keep wishing we could lower the dose but the doctor warns that lowering the dose too soon can cause more harm. And I think of Mina.  Our dog was very sick as a puppy and had to be on steroids too in 2021.  I tried to wean her off too soon and her health went downhill. The skin on Marlon's face is all flaky.  Leftovers from the rash.  I wonder if his body will flake too.  Mostly just his feet and hands that are still irritated but getting better. On the sidewalk near the hospital.  There are many hearts.  I assume it was a commissioned creation.  I saw him out there a few times painting away.

The rash is getting a lot better.  Still the feet are the worst part. His blood pressure is high but that is because of the steroids which he is taking to combat the GVHD.  The GVHD is not an easy thing to go through but it is not bad.  It is a step that the doctors want to see but it varies in severity.  This means the new cells are working.  The body is learning to live with the new cells and the cells are bringing a healthier life. There are stem cell transplants where people can have their own stem cells removed then after undergoing treatment, the cells are reintroduced.  This is also stem cell transplant but in this situation there will not be GVHD.  Their own cells. Dog water fountain.  

We had three nurses changing the dressing, the BMT doctors, the pharmacogenetics person with results from a test, and the infectious disease doctor all arriving at the same time today. Sometimes the visits stagger well and other times it’s everything at once.   I think they have finally decided that the rash is in fact GVHD.  They said that an infection can trigger it.  The thing with GVHD is that there isn't a test that can be done to confirm it.  Often it is just looking at the big picture of the symptoms. The rash hasn't changed much since yesterday but the pain in his feet is a little bit less.  Overall things are calmer and definitely improving.  Last week, I went down to the water again.  I saw these letters floating in the water and it took a while to figure out what they spell.  “It comes in waves”.

Things are slowly getting better.  More itchiness but the pain in his throat is reduced.  The rash has changed, moving down his body.  The pain in his feet is probably the worst.  At first he was blaming the pain on too much walking.  He is using old shoes and didn't move much in hospital but it is the rash and nerve pain from the inflammation. These are the elevators.  Orange boxes open to the atrium with big windows. I didn't notice at first but a finger on Marlon’s hand in the last picture was making a statement.  When I asked him if that was intentional he said it was.  Oops, sorry for being rude.