Lovingheart

A long visit at the hospital on Tuesday but mostly just waiting around.  His first return visit to McMaster. All is good. With transplant, an important drug is tacrolimus which suppresses the immune system so the new cells don't get kicked out.  He is being weaned off tacrolimus over the next couple of weeks. Marlon wanted to know when the PICC line would be removed.  Assuming all continues to go well it should be out within the month. Since getting out of Toronto, the pace has picked up and a full, normal, and healthy life is within reach. Happy dogs.  We have been making the most of the mild, dry weather.

He's off steroids.  In the morning he is expected at the hospital by 8am to check cortisol levels.  The levels can be affected by steroids as the body relies on the cortisol from the drug. It's good to think that the further away we get from the bone marrow transplant the closerk Marlon is to freedom from any treatment. A hawk watching a crow fly by

Drove Marlon to Guelph and spent a decent amount of time outside both before and after.  By the time the sun was going down, I felt chilled all the way through.  When I went to pick up Marlon, I cranked the heat in the car.  It helped a little.  He felt like it was too stuffy in the car.  When I was driving taxi, I often had the vehicle quite warm and toasty in the cold weather. Definitely not to everyone's liking. It was a real frost this morning.  

Spent a lot of time outside today. Marlon had a friend come over in the afternoon.  They walked and walked.  I am guessing Marlon tired his friend out. He is still immune compromised and is supposed to be somewhat isolated.  So far, he has pushed the boundaries a little (going into stores in Toronto with me).  He is planning to go into Guelph tomorrow and normally would take the bus.  I think that public transit might be a bit much. We have some ground cherries.  Unfortunately a lot of them froze outside.

It is good to hang out with the dogs again.  When we returned home and emptied our bags into the porch, Mina kept an eye on them.  Making sure we weren't planning on leaving again. In Toronto,  I was walking a lot more than Marlon.  I had to drag him outside for walks.  At home, I am telling him to go easy on himself.  While we were away, T and P were very busy with the garden, food, housework and the dogs (the dogs were treated like royalty).  I have been spending time getting caught up on some cleaning that they ran out of time to do, and my mail, and some organizing.  Busy days. Good old fall colours

So nice to walk around here.  The lovely fall colours, uneven ground, open space, far less traffic noise,... Marlon went on three walks and walked over three hours.   He will still be taking a chemo drug for the next year and that will start in a few weeks.  He was on this drug before transplant and it didn't leave him feeling too bad.  He wants to be strong and active like his old self While J's garden is mostly ready for winter this flower keeps on blooming.

We made it home! It felt like we had to wait longer for Marlon's appointment but as expected we were cleared for departure. So much stuff to pack up.  We had started yesterday but still so much. I am disorganized.  I fantasize about getting rid of everything but instead I hold on to stuff in case I might need it.  We both went for walks as soon as we got back.  Marlon by himself.  I went with the dogs and one of P’s friends who has been walking the dogs for us while we were away. Not much to this but it is so different.  An albino sunflower sprout.  So white.

I stepped out of our room and thought the hallway carpet looked different.  I realised it was the light shining through the window at the end hallway.  East end window in the late afternoon.  Light ricochet. That is an interesting beauty I have noticed in the city as the sunlight bounces around from one building to another.  With the many windows or mirrored surfaces the light ricochets. Packing, cleaning, saying goodbye.  Others are excited to see someone “getting out”. There is the boy that doles out hugs to one and all who is here as his brother goes through stem cell transplants (three).  The boy that calls me “aunty” who has been here for six months as he waits for a kidney.  The mom who is feeling disheartened after being here for six months while her baby struggles to breathe in the hospital and her daughter is at home.  The couple that had premature twins and are thinking that soon they may be able to take the surviving one home.  So ...

Second last hospital visit at sick kids.  Nothing much happening.  All is well. We are both looking forward to getting out of the city and going for walks on ground that isn't concrete. I am scared though.  Scared to go back to my life.  Scared to be confronted by whatever it is that has me want to escape my life.  I have no concerns for Marlon.  I feel confident his health and strength will continue to improve.  I am grateful for that. I have a lot to be grateful for.  I have to remember how fortunate I am. From one of the courtyards at the RMH.

We went out for a walk and ping pong in the morning before the rain.  Even had a few moments of sun.  It is challenging to ping pong in the wind.  The ball goes wherever the wind decides. We also went for a walk in the afternoon in the rain.  Marlon is content to be in the rain and as long as his arm and PICC line stay dry it works.  Two uni teams were playing soccer so we stood in the rain and watched. What an amazing thing to get a message from one of the moms I know here at the RMH.  She was in a workshop today, and met one of my nieces.  I love the synchronicity of the chance meeting. Before we had a dog and just had a cat, I knew the cat would really like cuddling with the dog if he just gave it a chance.  By the time the cat did realize the dog would be a good cuddle companion, the dog was terrified of him.  He (cat) would move closer and she (dog) would tense up and move away.  Unfortunately it was near the end of the cat's life s...

We walked down to the St Lawrence market again.  Once down there, Marlon hung out in a park while I walked on to the market. I also stopped at a grocery store but they didn't have what I wanted.  As I was leaving, I felt suspicious because I was wearing a backpack but hadn't bought anything.  There was a guy a little ahead of me also wearing a backpack and the security guard at the door asked him if he had a receipt.  The guy tried to get around him.  They moved back and forth and the guy tried to push past.  The security guard grabbed his jacket, but he just yanked himself out of the grasp and walked out the door.  Once outside he turned around, continued yelling at the security guard, swearing, and giving him the finger.  Shocking to be so close but I guess thieves know guards can only do so much.  The whole situation is so sad.  I have seen various levels of theft at the store I work in and it is very upsetting. A picture from two yea...

Today the father of the boy that calls Marlon my brother, asked “how's your brother?”.  Meaning Marlon of course.  My response,  “Funny you should ask, my brother just got married for the first time at the age of 67!”.  Not the response he was expecting and he didn't know how to react.  It's true though and I think that is pretty cool.  I am a cynic when it comes to marriage and may have responded with a “why?” when he told us he was getting married.  I'm happy for him. End of the canoe.  I had Marlon out to see it.  It really is beautiful.

One little girl left today.  Her baby brother was a preemie and has now been transferred to the family’s city hospital.  I will miss her.  I enjoyed playing with her and watching her hang out with others. There are many families here from the eastern provinces.  I have heard of many heart problems.  A man said that as soon as his son was born, he was rushed into heart surgery and at not quite 3 months he has had 3 surgeries and will need a couple more.  Unreal what can be done but the level of stress and suffering. Part of the kitchen area.  There are several stoves and each room has both freezer and refrigerator space in the big appliances.  They also have a drawer for dry goods.

He's been given a discharge date.  The 22nd.  A couple more hospital visits and then his care will be transferred back to McMaster. Unfortunately, they are keeping him on a minimum dose of prednisone (steroid) a while longer.  I was really hoping he'd be weaned by now. He has been alternating weeks of school work.  One week English and the next is math.  He has decided to focus on math and possibly get close to finishing the course in the next week.  The tutor at the RMH is good with math.  Marlon was explaining to me that he was struggling to grasp the current section.  I said “You don't grok it”.  He of course did not know the term grok.  I surprised myself by remembering the name of the book “Stranger in a Strange Land” and the author Heinlein.  I always felt that the word Grok is one of those words that feels right for what it means (even if it is a made up word that most people don't know about). There was a gas leak where the ...

The craziness around here is that they closed off College Street at McCaul.  Traffic in Toronto is crazy enough without a major road being closed.  The side streets around here were total chaos.   The nurse came by to change Marlon's dressing and I felt bad for her trying to get out of the area afterwards. Apparently the construction will continue through the night.  We sleep poorly enough here without the added noise.  We have ear plugs and I'm hopeful that will help. It’'s great there are so many bike lanes and pedestrians but I often think that some changes need to be made to help road traffic.  Because there are so many pedestrians, cars struggle to even turn right on a green light. Three years ago.  I understand it is more colourful once you get out of the city.

One of the nice things about the RMH is the variety of people.  Many children.  Some are here because they are being treated and some are siblings to those that are in the hospital. I have heard several instances of premature births and their siblings stay at the home as the parents unite to give both hospitalised and healthy attention. There is one girl (19 months) who is so full of personality.  She talks and talks but most of it is not understood.  Whenever she sees me, she wants me to play with her which I am happy to do if I can.  Yesterday, Marlon was wondering about me as I was behind him, carrying my dinner, when I was sidetracked by this girl and spent time playing with her.  Marlon thought I had dropped my plate. There is another boy that is very sociable with all.  He calls Marlon my brother, which gives us a laugh.  When this boy sees me, he runs (he is very high energy) and jumps into my arms. I'm feeling like a pseudo grandma and enj...

When we play ping pong, we're mostly just rallying back and forth, not playing games or keeping score.  I thought I was playing ok until Marlon admitted he was going easy on me.  We have played a few games and he wins easily every time. Playing outside can be a challenge when a gust of wind changes the direction of the ball. He may not want to do much but even if the air isn't the best in the city we get outside and do something. Saw this while we were walking and asked Marlon what he thought it was.  He just read the sign from the building not noticing the structure on the wall.

When Marlon was staying in the hospital, I walked up and down the eight flights of stairs several times a day.  One time, on my way up, I stumbled.  I didn't fall, but the person walking down the stairs and at least four stairs up, said “I'm sorry”.  Marlon laughed at that.  He gets a kick out of “sorry”. I dragged him on a bit of a longer walk this morning, down to the St Lawrence market. He is fine.  He is strong. He is well and healthy.  He did say he isn't going to put in too much effort to get back in shape until he is released from sick kids care. We stopped by the hand today.  A difference of seven years.

It is not uncommon to hear people yelling and swearing on the streets of Toronto.  Maybe drugs are involved and sometimes they are operating in a different reality.  Again it's just part of the variety of people that are out there.  A while back Marlon and I were walking along and there was this guy pushing a stroller with a dog in it.  Yelling with a lot of swearing.  He was travelling at quite a clip but his monologue kept on until at one point he swerved, cut us off, almost hitting Marlon with the stroller.  At that point, he stopped his swearing and said “Sorry”.  He then continued on his way with his pace and vocalizing. It was comical regarding the stereotype of Canadians saying sorry. We just had an announcement over the intercom to say that the central safety system has been fixed.  A test of the fire alarm followed the message.  I feel sorry for families with little kids that are (were) already asleep. Side view of the moose

Another hospital visit.  I was thinking he'd be freed next week but now they are saying another 20 days.  He is just fine but because the rash was so bad they are moving a little slower.  They did originally say 100 days post transplant but I was hoping less than 75.  Today is day 65. I am grateful that his primary hospital was McMaster rather than Sick Kids.  We are closer to McMaster but it could have gone either way. As it turns out there were three extra security guards at the RMH today.  Just after I was writing about them.  To access the building you either need a key card or to get buzzed in.  Because there are so many families, security is taken seriously.  The “life safety system” has a glitch so they have extra guards patrolling. I had friends that did security work after high school.  Often a night job.  I imagine it was different so many years ago but still I feel for the many security guards.  It must be such a bor...

It is not uncommon for stores in Toronto to have locked doors and doorbells in order to gain entrance.  Yesterday I went into one such store and the guy said that many stores on the street are having to do that.  It has been getting worse but the last couple of weeks were particularly bad. Homelessness, addictions, and mental health struggles are everywhere.  All grocery stores have at least one security guard either close to the entrance or just wandering. I was in a store looking for a wallet (I have needed a new one for quite a while).  A police officer said hi and told me they were stepping up their presence.  I wasn't sure if he was doing that with everyone or if I looked suspicious.  I did not buy a wallet there.  Still looking. There are several security guards at the hospital.  So many jobs for security guards, they are everywhere. There is a painted moose at the RMH.

  October 7, 2025 I just saw the results for the Epstein-Barr virus that they have been tracking and it is now negative.  One more good thing.  They were never too concerned about it but watching to make sure it didn't become an issue.   The nurse came today and changed his dressing.   The person in the room next to Marlon when he was last admitted was a little black boy that was less than two years old.  For whatever reasons, he had no caregivers staying with him.  I had often wondered what would happen to a child without a family that could stay with them.  When the boy was awake there was almost always someone with him, a nurse or hospital volunteer. I don't think the barn in this picture is still standing.  Pic is from a few years ago not too far from home.

Uneventful hospital visit.  They keep checking carefully to make sure there is no sign of a rash as they slowly wean him off the steroids. So often when I hear what other people are going through, I feel grateful that Marlon is doing well and that we have every reason to believe he will live a long healthy life.  Not so for many.  We are fortunate. Carved creatures in a park…

The leukemia has been in remission for several months now.  All of the treatments he has undergone are with the hope of completely eradicating it from the body.  As far as we know it has been a success.  Time will tell. Hard to believe that he had been strong and healthy for two and a half years and then seemingly out of nowhere the cancer was back.  One lone cell that lay in hiding? Or more? This time round along with chemo, he had the bone marrow transplant and the hope (belief) is that going forward he will be a healthy individual living cancer free.

The P word - protocol, had Marlon stuck in the hospital.  At least they let him out a few hours early. Even though his was never confirmed, in a case of fever in a post transplant immune compromised patient, protocol dictates they stay in hospital 48 hours until they get the cultures back to make sure there is no infection.  Marlon felt fine, never actually spiked a fever but they were being careful.  We are hoping he will not be hooked up again. Such a variety of architecture 

He was saying it is a good thing he is not prone to stress.  Before transplant there is a lot of hype about what a miserable process it is and how bad a person feels with all horrible symptoms.  You may feel bad now but for weeks post transplant you will feel much worse.  He is glad he didn't stress about it.  I, on the other hand, did. We are both relieved he is on the other side of it.  To think there are several patients that have to endure more than one transplant. Unfortunately, he is still stuck in the hospital even though he feels fine. Not a pleasant picture but so much garbage.  After moving out of Toronto over twenty years ago, I was aware of how many garbage receptacles the big city has compared to others.  So much waste.  Sad

Although he is completely fine, Marlon has been admitted again. Regular visit this morning for blood check.  His levels are fine.  His temperature was slightly elevated but nothing to worry about.  I received a call from the hospital about lowering the dose of a medication.  I said his temperature has been a bit higher, 37.9.  I was told to bring him in to emergency and now he has been admitted mostly just for monitoring. Because he is still very immune compromised they don't take any chances.  He is frustrated to be back in again.  Hopefully not for long.  Squirrel posing for a picture 

Since I was talking about crazy Pan yesterday, I heard more silliness about the dog.  He regularly hangs out with our neighbour, his second home.  The other day he was visiting while they were eating dinner.  They watched with amusement as he got a case of the zoomies.  He was so excited, enjoying his energy and the attention that he zoomed right through the screen door. As J said (and she tells it so much better than I do), good thing we know someone who fixes screen doors.  Marlon’s brother. Beautiful blue sky but fall is in the air