April 23, 2025

-

Before we came to hospital, the evenings were the worst part of the day for Marlon.  He was exhausted and felt ill but didn't want to go to bed too early. 

Now the mornings are hard.  He wakes up grumpy.  Add to that the issue he has been having for a few days and it feels worse.  The sound of his breathing and talking are excruciatingly loud and painful to him.  Something called Autophony.  One of the nurse practitioners asked around and figured it out.  A new condition to many here.  There are times when he can speak normally but mostly he is whispering or speaking very quietly.

He also had a dentist appointment today.  We drove there.  It was set up because he had pain when he was newly admitted.  As expected his teeth are not in good shape at all.  I was just about to set up dental appointments for Marlon when he got sick.  Now his counts are too low to have work done.  We shall see.  

We had a zoom call with a doctor at sick kids today to talk about the bone marrow transplant.  P and L were included in the call as they will both be tested as possible donors.  The hope is that one of them is at least a 50% match.  That is enough.  Otherwise they access a data bank with potential matches from all over the world.

Added into his mix today is a chemo pill he has taken before but not for 2 ½ years.  The daily one he was taking right up until the end.  This one targets the Philadelphia + part of the leukemia which test results just confirmed. 

Same as before.  Just amazes me that he is apparently in complete remission and so healthy one minute and then all of a sudden these cells that evaded death by the drugs before wake up and wreak havoc.


Because his name is similar to marlin, one of his nicknames with friends is fish.  When he was in better spirits last week, he made a fish fighting cancer.  Round 2!

Comments

Post a Comment

Popular posts from this blog

November 10, 2022 (2)

-
Image
Today, I dropped Marlon off at outdoor school and met up with a friend I have only seen a handful of times in the last 20+ years.  She was in the area for the passing of a family member. i then went for a walk with Mina.  I watched and she poised herself in hunting position and pounced.  I saw a squirrel run up a tiny little tree but also heard this pitiful whining.  At first, confused, I wondered if she had pounced on a nest in the ground.  But the dog ran to me, crying and whining, holding up her paw.  We were a ways from home and she hobbled carefully home after we sat for a while and she calmed down.  She will often run the perimeter of fields, running this way and that.  I saw her longing to run the field as we made our way back but she was uncomfortable and limping. A short while later, I went to pick up Marlon and watched in amazement as he hobbled to the car.  Yes, he had hurt his foot within an hour of the dog hurting herself.  ...
Read more

July 5, 2022

-
Image
Decision was made that Marlon was to go check blood counts on Monday.  We drove down to Hamilton together, quick finger poke, and then leave again.  A couple of times, we drove around the parking garage for almost a half-hour looking for a spot, but Monday was smooth.  Busy place. Blood counts are good so dental work begins.  Marlon's doctor was impressed with the dentist when she spoke with him last week.  In support, I sit next to him in the dentist's room and hope my own anxiety, discomfort, and fear don't affect him. Halfway through the drilling of four teeth which was quite intense, they took a little break to check in with Marlon and see if he was up to continue.  He agreed to do more but said he was most concerned about the tastes of the filling material.  With the pain and discomfort of the first part, one would think that would be the least of his worries but he is very sensitive to taste and flavour.  As it turned out he didn't gag or re...
Read more

April 17, 2025

-
Image
It is shocking to see how sick he is. Not sick in the vomiting sense but so zapped of energy that he will wake up, walk to washroom, back again and sleep. Sometimes awake for 20 minutes like when the doctor came this morning to let us know his treatment plan. Chemo has started and I hope he comes back to life. Right now the leukemia is destroying him and it is so hard to see. I still can't believe he is back here again. The doctor said that in the past, they may have blasted the relapse very aggressively with chemo. Now it isn't nearly as aggressive a treatment. Well until you get to the bone marrow transplant (BMT). Chemo and steroids have begun and will continue for four weeks at which point they will check his marrow again. Once levels are better, immunotherapy will begin and continue for two months. Then comes the bone marrow transplant.   His brother and sister are first choice as possible donors. Blood needs to get typed and see if there is a match. All three ...
Read more