Lovingheart

I miss the dogs.  I also stress about them.  They each wear trackers and Pan is regularly getting into trouble going onto the commercial street nearby.  Not a place for dogs with various factories and regular traffic on the road.  Some have seen him and think he is a starving dog so they feed him (the problem with a dog that is part whippet - he looks skinny).  He keeps going back for more.  One time, I even heard he went into a lunchroom and was scavenging in the garbage.  I have been messaged by people working there.  He has been driven home several times.  Yesterday was a bad day for that and I was so stressed out, wondering if I have to re-home him if I can't be there.  Marlon stressed as he felt guilty that I was with him.  P gives the dogs lots of attention and exercise when he gets home from work in the evening.  Pan goes wandering during the day.  T will see the dogs playing happily together and then a few minute...

I have been thinking for several days that Marlon will be going home soon.  Overall he is more stable and relying less on the IV.  Then yesterday I heard his neutrophils are at 0.1 or even 0.  Normal range is 2.0-7.5.  Neutrophils show his immunity and I remember from last time they usually require at least a 0.5 to be released.  One of the nurse practitioners confirmed that today.  It is common for them to be unwell during the induction phase so he may stay in hospital a while longer. On the bright side, Marlon does not care too much one way or another where he is.  He doesn’t have the energy to do much. That said, we did go outside a little bit and he sat on the grass while I walked down the road to get us each a toonie Tuesday cupcake.  He might prefer the peace and quiet of home and the outdoors there but we’ll have to wait a little while longer. Before his shower, which was before we could go out, he also required platelets and blood again....

Marlon has had several transfusions in the two weeks he had been in hospital.  Mostly just platelets.  I think 4.  Surprising how fast the levels went down.  Yesterday, he also had a blood transfusion.  First one this time around.  Pretty good today.  He had breakfast and shortly after that took a nap.  Two of his aunts came by for a visit.  We hung out for a bit and then Marlon's latest food craving had us leave the hospital grounds to go find poutine.  Nice for Marlon to get out though he did find the heat and sun a bit much.  His craving was very specific poutine with bacon and cheese sauce and gravy.  Specifically on home style fries.  Boy did he enjoy that meal. The other fries we had were with guacamole and green onions.  Not bad.  Marlon felt great for about two hours after his meal and then the nausea hit.  Like a small truck according to him.  He was miserable for several hours.  But he di...

Two weeks ago we were at home and had decided to go to hospital the following day.  I was feeling a little more panicky when I saw him spiking a fever.  It cleared up in no time but I told Marlon several times that if ever he wanted to leave sooner just let me know.  On Monday, I realized the previous day was 4 years to the day when Marlon went septic and I thought he died  ( April 13, 2021 ). No wonder I was more anxious than usual.  Well ok, I was also concerned because he wasn't well. He had visitors today.  A friend of his, her two younger siblings and their dad.  It was a good visit overall.  The youngers, their dad and I walked around campus.  He had been to school here back in the 90’s.  That left Marlon time to just hang with his friend. He was exhausted after the visit but so happy they brought him a 7 layer dip.  That was his big request.  I did go out last night and early this morning but had no luck finding it arou...

A pleasantly uneventful day.  He awoke often in the night to pee.  This was because of the extra fluids dripping in via the IV.  But I feel like the extras he has been given have helped. Food is still an issue.  He is hungry but chewing and swallowing hurt.  He grimaces with every bite that goes down.  That is the acid reflux.  He was able to eat a small burger for dinner.  From that he enjoyed the lettuce but most of all the two cherry tomatoes and the shreds of cabbage from the side salad. If asked about the highlight of the day he would say the cherry tomatoes and he did have a visit from one of his favourite teachers which helped to make the day special.  Ended up setting some pictures from long ago.  Not quite 4 years old in this picture.

I cried a lot this morning.  Scared for Marlon's mental health.  He just shut down.  He was nauseous, he was in pain, tired, and emotionally done.  His tongue hurt, mostly from where the teeth on the inside bite into it, it hurts to swallow because of the tongue and his throat.  His stomach hurts a lot from the acid reflux.  He ate a bite of egg, some cereal, two of his six pills, and then threw up.  After that, nothing.  He refused to drink, eat, or communicate.  Just sat there not moving for a long while.  I panicked and cried.  I fall too easily into despair. Eventually he fell asleep.  The doctors decided to hook up his IV again and start giving him a lot of his medication, liquids, and nutrition that way.  He had a hearing test and that turned out great.  Very good hearing.  One good thing.  He tried to eat a little dinner but grimaced with every bite.  Everything hurt so much.  At least by th...

He had a pretty rough night.  He felt that one of the pills didn't go down properly but I think there may be a sore in his throat.  Add to that the nausea that is now surrounding him, and he is miserable.   He was zoned out for the first part of the day.  So hard to see.  He won't talk.  Doesn't answer anyone's question verbally.  Couldn't eat much.   We had an appointment to learn about going home with the insulin.  He brought his lunch along which he was to eat after getting the dose of insulin.  He barely ate anything and didn't acknowledge the people in the room. On the bright side his insulin was relatively low, reaching a week long low of 8.8 in the afternoon.  But that was because he had hardly eaten anything. So not really so bright. When we got back from his appointment, he had a nap then a friend showed up.  They chatted while I walked some laps with the mom.  Nice to catch up. Again supper was not good...

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...

I sit here as he sleeps on after the LP (lumbar puncture), and my eyes fill with tears, and I think how we are back here again.  In some ways we have slipped back into the hospital routine but it is not the same. The past couple of days Marlon's spirits have been a bit lower.  He figures he is missing out on at least a year of life.  He was at a certain place and now he isn't.  He is sad for the life he lost and worried how far behind he will be on the other side.  And he feels bad physically.  He can't really say how, just bad from head to toe.  When people ask how he is, he struggles to answer. He is five years older this time and has a much deeper understanding of life.  He worries about the future.  How will he find meaningful work that he can support himself with?  To be fair, that is a question haunting many people nowadays. His weight was down another kilo and his blood sugar is still all over but he did get down to 14 at one poi...

The big focus is on Marlon’s blood sugar.  Normal range is 4-7.  At first when they noticed his levels were high (when I was away on Saturday), they were at 17.  Since that time, the lowest they have been is 15 and the highest is 25.9.  He is peeing so much and they wonder why he is still losing weight.  He has now lost over 10 kilograms (22+ pounds) in 3 days.  Both the steroids and the chemo he had yesterday affect the ability to deal with glucose but still they keep injecting more insulin into him and his blood sugar levels are much higher than they should be.  I don’t get it.  But I do.  It seems that already the leukemia is weakening and going away so these drugs are working for their intended purpose but all the other side effects are popping up. Yesterday after the chemo when Marlon felt so bad, we sat together for a while and then he fell asleep so I went out for a walk.  A longer walk and I spent a good while watching a hawk aft...

Yesterday morning, I was woken up shortly after 6 am by the fire alarm.  Lying there listening and then the message: Code Red - Mechanical Meds Center - Zone 21 Okay, so it isn't a false alarm.  What happens?  I assume I don't need to worry.  Everyone outside the room seems pretty calm.  The fire trucks come along.  Luckily Marlon slept through a couple of hours of the alarms.  Eventually came the all clear message.  I think I heard it was just smoke from something.  A lot of precautions are in the structures and doors to make sure that fire does not spread easily. And today Marlon lost another 4 kg.  All the stored water and then some has been peed out of him.  His blood sugar continues on the high end even though they regularly inject him with insulin.  It is the steroids that are playing havoc with his sugars.  It just seems so crazy to give more and more drugs to combat side effects.  However we trust they know wh...

We were laughing last night. What a treat. The steroids are kicking in and Marlon is wired. Lights out and his brain kicks into overdrive. His self diagnosed ADHD brain is super charged on speed. Some of his questions: Anabolic steroids vs medical steroids - difference  What does LED stand for Mathematical formula to calculate buoyancy  Mathematical formula to calculate air pressure  What is lung capacity? There were more but then he kept his ramblings inside. I suggested he should use some of this ramped up brain power to do some school work, especially math but I wonder if it might be too erratic to concentrate. Since being admitted Marlon has gained 6 kilograms. All is water retention. His IV is constantly dripping in liquid plus he is still drinking but his body hasn't been able to process the liquid. Last night he woke up so many times in the night to go pee. He is looking more like himself. He had such extreme swelling in his face and neck which was partia...

When Marlon completed treatment last time, he didn’t feel like he did anything.  It was the nurses, doctors, and drugs that did everything.  He may have endured treatment but he didn’t feel like his healing was a result of anything he did. I know as outsiders, we want to do something in situations we can't change.  Whether the death of a loved one or sickness.  And “I’m sorry” can only go so far.  There is a feeling of helplessness when we can’t do more. It’s an interesting thing, the feelings surrounding a dramatic event.  It’s ok to feel sorry but not too sorry.  It’s ok to have sympathy, just not too much.  Marlon’s life has been hijacked but at this point, life goes on.  Our lives continue.   Our hearts ache for the pain of others. And so many people suffer in so many ways. Last time around, Marlon had a friend that was enduring his own health trials and they would compare to see who’s suffering was worse.  Of course you ca...

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 ...

One of the first things Marlon had to do was collect sperm for freezing. Weird on so many levels. He did delight in my discomfort on the subject. I drove his sample to the fertility clinic where it was studied and then frozen in case he ever chooses to have kids. It wasn't the best or healthiest but good enough we hope.  Infertility is not guaranteed but possible. Overall, Marlon's spirits are high. Good humour though physically he feels drained and exhausted. No appetite and uncomfortable. That is just the leukemia that is still alive and well. Treatment starts soon which we hope will eradicate it again.  He had a pic line inserted. He would rather have had a port which is internal with nothing sticking out but because his platelet counts were low they choose the less invasive route. On the side of his upper arm, he has the lines hanging out. Still it is better than IV. He had a couple IVs inserted and used and was poked several times and that is much more painful....

 Confirmed today that the leukemia is back full force. Because of how fast and aggressively it came on, they are starting treatment immediately. She did say that without treatment he wouldn't live long. He is understandably upset as are we all.  Bone marrow transplant may be necessary.  No complete treatment protocol yet as they still need to hear back the exact kind of ALL it is. Extremely likely it is Philadelphia positive like it was last time. I have been in denial that this was true. I really hoped they had made a mistake.  No mistake It shocks me how fast his blood levels have gone completely out of whack Marlon has been asked about saving sperm. Not sure any fertility will survive what is coming.

 April 14, 2025 When Marlon first started cancer treatment back in 2020, the cancer just seemed to flee from his body. We're outta here! We continued through the treatment prescribed and I really believed cancer was a thing of the past. We went to our follow up visits and his blood work was great.  Anytime anyone has asked me, ‘How’s your son doing?’. I responded that he was a healthy, normal, teenage boy. Healthy, vibrant, strong, active, with an expected dose of attitude and rebellion mixed in. The very end of March, Marlon pointed out a little bump on the back of his head. Then his lymph glands under his jaw were swollen. Looks like mono. Around that time, a girl at work mentioned her dog with swollen lymph glands which turned out to be cancer. I had a moment of panic and called the oncology department. He was just there for a regular checkup February 27th. His blood work is great. Go to your family doctor.   Doctor said it looks like mono. Get blood wor...