Lovingheart

Luckily Marlon slept well last night.  I woke him up this morning playing 'Move It' by his bed.  Back to the hospital.  This week and next he is going four days.  Whereas we were at the hospital almost five hours yesterday, today we were in and out in less than half an hour.  A quick push of the chemo and we were sent on our way. For the week, Marlon remains accessed.  He doesn't like it and his movement is quite stilted as he favours that side and holds his arm close.  I am constantly reminding him to move and stretch, otherwise, the pain will get really bad again. He is not as sick as I was worried he might be.  He hasn't thrown up but he is feeling quite low.  He is eating though.  Good thing he is ok.  It allowed me to go to Guelph.  I ended up being there much longer than expected. This evening, I took Linsy to Georgetown where she was completing skating tests.  That was quite delayed as well as they were running behi...

As I thought, Marlon's counts were good enough for treatment to continue.  Darn! When we got to the hospital this morning they still considered Marlon as needing isolation.  Then the nurse asked if he had any symptoms and we said no so he was allowed in the clinic. No food or drink this morning, though he was accessed and they dripped in lots of liquid through his port.  And unfortunately lots of chemo drugs.  It was a busy morning for procedures and Marlon was last so it was afternoon before he went for sedation.  Poor guy, he was hungry!  And also starting to feel the drugs they had already pumped in.  So sad and emotional to see the suffering and craziness of it all. He had some snacks and requested subway.  We picked it up just before getting home but he wasn't able to eat too much of it.  Still food cravings but the body wasn't able to handle much. A while ago I mentioned beef jerky as being a staple that Marlon could always eat.  I...

I had barely hit send on yesterday's email when Marlon called out 'throw up' and then promptly threw up all over the bedding.  After all the food he ate, I am not surprised he threw up but he has always been good (amazing really) about getting it in a receptacle.  So we got him cleaned up, changed the bedding and I cleaned while he went to bed.  He reminded me he had also thrown up in the morning but that was before he had eaten anything.  Oh well!  I count myself lucky that such messes are not a regular occurrence. Today was a fairly uneventful day.  He did feel off in the morning but it didn't last long.  Not so much reading as listening to podcasts since he has finished all those books. I made him come out for a little walk and he did, though he was nervous about his legs giving out on him.  He was fine. Back to the hospital in the morning.  We'll see if his blood counts are good enough to proceed with delayed intensification.  I feel...

Just another rainy day.  The way things have been lately, that is quite OK. It took him a while to fall asleep but then he slept through the night and was surprised to see it was morning. Marlon finished reading his new books, wrote some more of his story, and walked inside the house.  He didn't want to go outside but is putting in the effort to move more. Over the past couple of weeks, he has lost weight and seemed to try to gain it all back in one day.  He ate well and said he never really felt full until after supper. I did go out and was appreciating the water still dripping in the woods but the song and flight of the birds as they continued on with their day after the rain. The books he plowed through in the past couple of days.

Glad to see Marlon is continuing on an upward trend. Sleep still isn't the best and he was lying awake in bed for a long time this morning creating a story.  He spent some time typing up his story.  Still not done as he said he wants to write a book.  We'll see.  After typing about a page I asked if he had any paragraphs.  He laughed and said he didn't even have much punctuation, just one period and an exclamation mark.  I told him we will edit it later. I don't normally buy many books, preferring to borrow from the library.  There were a few books Marlon was interested in that the library did not have, so he got a few new books.  He did a lot of reading today.  With all this reading, he said he is earning time for a few audiobooks too.  I think that is a good deal to have a mix of listening and reading. Overall, Marlon was pleased with his day and his accomplishments.  He didn't put much into regaining his physical strength, but th...

I am grateful to say Marlon had a much better day today.  His sleep last night was still not the best but every night it gets a little better.  He did get a few hours of uninterrupted sleep.  I can tell he is feeling a bit better when he is more chatty.  The past week, he hasn't had as much to say, sometimes preferring to type me a message rather than speak.  Today was some chatter.  He is still quite weak and not up for much physical.   I took Stella for a walk and once again didn't even consider taking Marlon with us. The evening, he walked with me to Josephine's to pick up a package that was delivered there.  He practically staggered home after that, his legs even giving out on him at one point.  He needs to regain strength again  Origami goldfish

Confession time.  I believe Marlon ended up in the hospital this time, in part, because I cut corners.  And I feel so guilty. So many parts of it bother me.  It has happened before with Marlon's treatment, that I didn't follow the guidelines properly, and he suffers needlessly.  I add to his suffering.  What also gets me, is the energy around it.  It is one I know too well and it gets me in trouble.  I have seen it come out at work and doesn't often end well. Gosh darn, why do I have to be a fallible human that can cause suffering to another because of my own pigheadedness!  Of course, the blame that comes with this and the kicks I give myself serve to make it worse. I was supposed to give him a pill to help with the side effects from another pill.  And I didn't.  I feel guilty and admitting it is hard.  Pigheaded.  Cutting corners. Not following rules.  Why don't I learn!?! That is my rant, the guilt that has kept me on t...

It was 10 pm last night, by the time they got the results back.  At 11 pm we were settled in a room on the ward.  The nurse did explain that Marlon does have a rhinovirus, which is common cold.  That explains the extra nose-blowing he has been doing.  Unfortunately, this means he is in isolation and he uses the commode in his room and I can't use the kitchenette. Overall it was not a great day.  He always feels a bit lower in the hospital and considering he was already feeling pretty bad to start off with, it didn't improve much. Heartbreaking this evening, when he is getting intense, painful cramps, and he is crying and crying.  Big sobs and saying he just can't do it anymore. He did get over that and I am hoping he is actually asleep now.  Last night he dozed on and off but he was awake more than he was sleeping.  I slept more than him and I am very tired today.  Plan is for him to be discharged in the morning but we will wait and see....

Today, I was saying to Nate, the Child Life Specialist, that I am hoping Marlon will not be going to emergency anymore.  To be honest, I challenged fate by saying he will not be going back. Ha! What I did not realize is what this phase of Marlon's treatment is.  It is called Delayed Intensification and you can almost see people visibly shudder at the mention.  I did not realize this treatment is almost as bad as it was at the beginning.  It is not uncommon to end up back in the hospital during this phase. When the doctor saw Marlon she could tell he wasn't well.  The blood counts show him as being neutropenic but not in need of a transfusion.  They accessed him and gave him liquids.  He had been struggling to drink this week.  I feel like I have been nagging him constantly. The doctors saw he has several mouth sores, and with him being so weak and sick, they decided to admit him.  I was almost in tears. Marlon hardly slept at all in the night...

'This chemo is making my insides jump around like a tub of cursed jelly beans!' First thing out of Marlon's mouth this morning. And that seems to be the day.  Was it wishful thinking when I said he seemed to be getting better?  He hardly moved at all today.  Wouldn't go outside.  Moaned, cried, and used puppy-dog, pity this sick boy eyes. He threw up after breakfast.  We both acknowledged it has been a while since he has thrown up.  Like a really bad case of the flu where moving or doing anything is too much to even contemplate. At the end of September, one thing he could eat was garlic-stuffed olives.  It got to the point I was having a hard time finding them (still supply issues at that time).  For the past while he had been off olives altogether.  Yesterday, he was pestering me to go get him garlic-stuffed olives.  Though I prefer not to go to the grocery store on a Sunday, I went to Sobeys and got a couple kinds of olives and slice...

While far from energetic, Marlon is slowly coming back to life.  He is not moving much or doing much of anything.  He ate a little better today and didn't look quite so woebegone.  His hair, which was growing back, has started to fall out again.  Here he is pulling it out by the chunks. We may give it a buzz to stop the patchiness. This afternoon I picked up Linsy from her boyfriend's house (really the only friend she sees).  After talking a bit, I turned around, and walked head-first into the hydro pole.  Shook myself up, it hurt (maybe a little whiplash), but more than anything, I feel like an idiot.  A bang to the pride.  Open your eyes!! By 7 pm, Marlon was saying how tired he is.  By 730, he could barely keep his eyes open.  Though he didn't want to go to bed too early, he was in bed by 8.  Just before 10, I heard his cry of distress.  He is still awake, feeling uncomfortable in his body, his abdomen, his throat.  He ...

Sweet spring equinox! Already.  A glorious day, the sap is running and I bet somewhere, someone was swimming outside.  Definitely not me.  I just admired the water. And of course Stella.  Here she is trying to eat a goose feather.  Silly dog. Once again, Marlon was not out enjoying the beautiful day.  I had really thought by now he would be feeling better.  Part of it may be the steroids bothering his stomach and his sleep.  But overall he feels terrible.  Ever so often the real Marlon pokes through but then disappears and I wonder what he will be like when all this is over.  Will he enjoy the outdoors again?  Will he enjoy telling his stories? Where and how will he find joy!?  Hopefully not only through a screen!

I feel like I have received so many gifts from nature lately.  This morning the woodpecker seemed quite oblivious to me as it pecked away at the pine tree in front of the house. Later in the afternoon, I was admiring the calm water on the pond, not a ripple.  And then slowly a gentle breeze added ripples moving across the water toward me. I was drawn to this tree, doing a loop on its way upward. Unfortunately, Marlon did not join me outside.  He did go out a little bit but once again he spent most of his day in his chair.  Tired and feeling icky.  His steroid mind is craving food and coming up with all sorts of foods to eat.  But the chemo suffering body vetoes most food choices.  He is often hungry but struggles to get much down The library books Marlon ordered the other day were in, so I walked to the library to pick them up and drop off the four he just read.  Before he crawled into bed tonight (and he was barely upright he was so tired), he re...

'I'm so tired, exhausted is an understatement'.  His words. Not a good day for Marlon.  He is really feeling it.  The results of Tuesday's chemo have caught up with him.  I don't think he went outside at all.  He didn't eat much.  He was often hungry but when he tried to eat, he felt like his throat was closing up and his abdomen hurt.  He looks show it too.  Pale and all around his eyes, the skin is red with dark circles under them.  He finished the library books and borrowed the audiobook Born on a Blue Day.  This evening, even though he could barely move, he was marveling about the book and the mind of the savant. I didn't even bother to ask him to come out with Stella but we had a nice walk. I was surprised to see a drawing in Marlon's book.  'Not how I'm feeling'

Marlon asked if he could borrow Born on a Blue Day again.  He did not know I had just mentioned the book, he never reads my updates.  Reminds me of when the older kids were younger and I would look at a toy and think to myself that I could get rid of it because they never play with it anymore.  Next thing I know they're playing with said toy.  They read minds. Marlon woke up in the night, saying his abdomen was hurting so I stayed with him.  The pain went away but has been around occasionally throughout the day. He put a few books on hold from the library and didn't want to wait so we went to go pick them ourselves.  After looking for a while, the librarian said they were Georgetown books.  I did ask Marlon where the books were but he read it wrong.  We will wait until the books are delivered to Acton and got 4 different books out, greek mythology. He asked me if he could borrow another audiobook once he finished these four books and I told him he...

At the hospital this morning, I wasn't surprised to see Marlon's counts were down.  Not down enough to delay the chemo that was scheduled.  Third week in a row of the same chemo mix and I was concerned after how he reacted last week.  As he was being de-accessed after the treatment, he said it wasn't as bad. Today is also the first day of another week of steroids.  Doesn't take long for the cravings to start. Marlon was looking pretty rough all day.  By evening he wasn't able to eat much and was looking forward to bed.  Hoping he sleeps well. On Sunday, when we had our walk with Olivia, she mentioned watching a video about skating on thin ice.  She shared the video and it turns out this is the noise I heard from the pond yesterday.  Obviously I wasn't skating on the ice but it must have shifted in a way to make music.  https://youtu.be/v3O9vNi-dkA Marlon spent time drawing before bed tonight.

This morning, I told Marlon it is back to the hospital tomorrow and he exclaimed, 'What happened to my week!'.  I am not looking forward to it but we will wait and see how it is. He came with me to Sobeys to check out certain food items he had in mind.  He had planned on having B'Noodle soup (baked beans, noodles, and mixed veggies) for lunch but when we got home from the store, I realized we didn't have any beans.  Duh!  Oh well, he was happy with other stuff. I had a great walk with Stella.  Such a beautiful day.  The dogwood is such a beautiful red and the contrast is amazing.   When I came back from the walk, I gave Marlon the leash while I loaded up the car for a trip to the dump.  She dragged him all over. This morning, I stepped outside for a phone call and was standing by the pond noticing the contrast of the ice, some thicker, and some fresh from last night.  All of a sudden I heard a noise like a synthesizer.  Kind of like...

Gosh darn time change!  We will adjust. My sister, Olivia, came by this afternoon with her dog Roka.  She had a birthday present for Marlon and we went for a walk.  It was a cold wind and a gorgeous day.  The theme ended up being ice.  Not that we were looking for a theme but found and appreciated many sizes and shapes of ice. Skinny sheets of ice and two-inch thick chunks of ice.  Frozen drops of water on ice.  It was a long walk for Marlon.  He was feeling it but he did enjoy it too. After the walk, Marlon looked at the present from Olivia, two sweatshirts.  She got him the green-checked one because it was a zip-up and she knows he prefers zippers.  He said 'It is a Creeper!'.  Olivia had no idea what a creeper is.  The sweatshirt is a minecraft one and she had no idea.  Perfect. Lately in the evenings, Marlon's legs have been quite sore.  His knees and different parts of his legs.  Not sure why, but even after...

We are at the year point of this pandemic.  For Marlon a year ago today, he went to his friend's birthday party.  Last social occasion.  I think I dropped him off and went to work.  Anyway, today Marlon got to see that same friend for a little visit while I went to the market. Last week at the market, I was hoping to buy more beef jerky.  This particular product has been something Marlon can eat even if he is feeling poorly.  There was no jerky in the display and when I asked, the guy said they weren't making it and won't until the weather is nice and they get busier.  Darn!  This week there was lots of jerky in the display.  I bought some and asked about them not making it.  We both laughed when we realized that through the masks he was talking turkey and I was talking jerky. In our mailbox, was a new book a friend dropped off for Marlon (Wings of Fire graphic novel, thanks Luke).  He got to reading immediately, and other than walk...

Last night as I was turning out the lights, I heard Marlon weeping.  Even though he had been in bed since 830, he still hadn't fallen asleep.  He wanted me to lie with him and I hoped it might help him to sleep.  At 3 am, he told me I could go to my own bed.  I had temporarily dozed off a couple of times but he was still wide awake.  He figures it was around 4 when he finally slept.  And he was awake before 830.  At one point while not sleeping, we realized he didn't take his evening pill and wondered if that may affect his sleep.  Unlikely.  Steroids do affect his sleep. He hasn't taken them since Tuesday.  Hoping tonight is better. The special thing about today is that it is my big baby's 20th birthday.  Paco doesn't like too much attention or want for anything so it was a low-key day but special nonetheless.  Remembering his birth and sad to think the story I wrote of that day is gone along with my pregnancy updates. Keeping...

To clarify the past week. The steroids, Marlon was taking pills for a week, starting a week ago Tuesday in the evening.  It is the chemo that is making him feel so bad.  He had chemo a week ago Tuesday, last Friday (a rough one), and again this Tuesday (even rougher). Today was a little better.  He was more talkative and animated.  A little more restless than the last couple of days that passed him by in a haze.  Not feeling great.  He didn't eat much.  He requested pizza for supper but you know it's bad if he can't even eat one piece of pizza. My sister suggested I talk to Marlon about what there is to live for.  My first response was that I am not a good person to answer that question as I still haven't figured it out.  We live because we live and we will fight to stay alive.  We enjoy the beauty and the happy moments and hopefully, we learn and grow.  It is the challenges that can be the biggest teachers.  Our lives are indi...

And just like that, he is no longer on drugs.  Well, only the steroids, and only off for a week.  Where he has been chatty, especially in regards to food, this morning he hardly said a word.  He crawled out of bed, not changing out of his pyjamas, and curled up in his chair.  He didn't sleep well, his throat was irritated and raw, and he was uncomfortable.  I knew yesterday he was bad when he didn't even want to play Minecraft with friends.  He picked up a little in the afternoon but by the evening he was sitting, comatose, in his chair again.  He has put his sketch pad away. This is so hard to witness, to be a part of, to know right from wrong.  I don't know.  I can cuddle.  I can support.  I can provide food.  I do what I can.  And I count my blessings.  We have so much to be grateful for.

Once again, Marlon starts going downhill the minute we walk in the door of the hospital.  We get to clinic after finger poke and he plugs in and zones out.  A few treatments today and by the time he was being de-accessed, he felt he could barely walk.  He was shivering and shaking and crying.  He kept saying he wants to give up.  The whole ride home he sat, not saying a word, staring straight ahead, not even listening to book.  He got to his chair, curled up for a while, and then started to emerge.  He wanted food.  He ate quite a bit.  His energy was low, both physically and emotionally.  He had been asking for tacos, and finally had them for supper.  That was really the highlight of his day.  Definitely not a great one.  I did go out for a walk in the afternoon but unfortunately, he did not witness the beautiful day other than the walk to and from the car. And I think, how is it we are here…

He i s a boy on drugs.  Thank goodness that after tomorrow we get a break for a week from these pills.  They say irritability can be a side effect.  Luckily his mood stays pretty good maybe a little too high.  Shaky. Less concentration.  And food. For three meals, he got what he wanted.  I went to Sobeys this morning and filled his shopping list.  Still, the cravings accumulate. When I went out with Stella in the afternoon, he joined us until he ran out of energy. He doesn't have a lot. He chose to go to bed early because he was so tired he couldn't see clearly.  He was in a good mood and happy with the day.

The ups and downs of the day.  The first part of the day where he is obsessing about food.  He wrote me up a shopping list and even though I told him I would go later in the evening, he asked several times if I could go pick up the items at that time.  We played cards together.  His energy is high-strung and shaky yet weak and clingy. The second half of the day he was barely keeping himself together.  Lots of hugs and cuddling.  He was slightly hungry but very nauseous and tired.  He wanted to go to bed early but he didn't want to wake up early. He said he was drawing a picture to illustrate what his days are like.  I was curious to see what he would do.  A line zigzagged across the page.  Yup, that about sums it up.

Marlon was not up for much today.  He did tell me that playing Minecraft is nice because even if he is feeling really bad, it doesn't affect his play.  He doesn't need to be strong or energetic. The best part of the day for him was food and thoughts of food.  It is amazing how fast those steroids change things.  I remember the conversations about food from last time.  He told me a list of things he wants to eat in the next while.  He sent me messages with food emojis, and the word FOOOOD. His energy was more 'in my face' and his actions a little rougher.  His whole being is affected. Until the end of the day when he is spent and nauseous.  We cuddled together and he did throw up. And he hurt. He wished he could just snap his fingers, and be in pyjamas in bed with his teeth brushed. On the plus side, I took Stella for a walk (Marlon was not feeling well enough to join us) and instead of pulling me back to the house, she wandered more and we played ...

A rough one today!  This was a different chemo than Tuesday and he sure felt it.  As soon as we got to the hospital, Marlon started to feel unwell.  Not uncommon.  I said it is probably psychological and he agreed but said he still felt bad.  Fair enough. He was accessed and they started with Benadryl, some other drug, and then the chemo.  Marlon plugs into videos and it can be hard for me to tell where he is at when he zones out like that. When the chemo was done and it was time to be de-accessed, he was in tears.  He felt horrible, like his body was being taken apart.  He didn't want to feel this way.  Lots of tears.  I hugged and held him, the nurse rubbed his back.  She left us for a while, came back, and de-accessed him.  He continued to cry.  We stayed there together for an extra half hour until he was calm and well enough to walk to the car.  I sometimes forget that this feels so bad for him. I have never been ...

No particular reason for this but a down day.  A blue day.  Hmm writing this makes me think of a book Marlon and I listened to together, Born on a Blue Day, the story of a savant, Daniel Tammet.  We listened to it over a year ago, and there have been several blue days since then.  Seeing Marlon lacking any motivation to do much other than sit and listen to books is disheartening.  Then again, I too, am uninspired.  Not motivated.  Just another day.  I know we all have days where we aren't feeling it. When we were getting close to the hospital on Tuesday, I looked out the window and saw a hawk close by in a tree.  It felt like a good sign.  Today, I went into Guelph.  Driving down the road, I looked and saw a bird flying next to the car.  I slowed down to be driving close to the same speed, in awe of this moment.  My first thought was a hawk but it seemed small for that, maybe a falcon.  In its clutch, was a dangling a...

Marlon calls plugging in, whether it be videos or games or audiobooks, his morning coffee.  Sometimes he 'needs' it more than others.  This morning was one of those.  He tried to eat something to counteract the bad taste in his mouth but that didn't work.  I let him have some time and then went to him to check-in and ask about breakfast.  Once unplugged, he threw up (he didn't remember that this evening).  He slowly came around but it did take until afternoon to lose that look.  The one that says, I feel terrible! By afternoon he was bouncing around, we took Stella for a walk, and then walked to the mailbox.  Then he was wiped out for a while. In the evening after supper, we made chocolate chip cookies.  He was so excited about the big one we made.  He had the measuring tape out to see how big it was before and after cooking (7 inches once baked).  The extra big cookie was the highlight of his day!

Early morning today.  A peaceful drive to the hospital with Louise.  Going down the escarpment towards Milton and the sun was shining bright on its journey higher in the sky. Marlon did well being accessed but big tears rolled down his cheeks as he submits to the treatment once again.  Perhaps harder after the break. They started chemo and then he went for sedation and LP.  Back to clinic again to complete the day's chemo. On the way to the hospital, I was thinking of the many parents and children I have met along the way.  And I want to know how they are doing.  But paths don't always meet.  I was thinking of two boys in particular and happily they were both there today.  One of the boys is new on the journey and when I spoke with his mom about a month ago he was in poor shape and in so much pain.  I was happy to see him playing at the clinic today, pain-free, and moving freely.  It got me to thinking of how much pain Marlon was in when...

While Josephine was at work today, Marlon and I took Stella outside.  Walking through the field with that blowing wind.  She is still unsure about being with us and I don't think she even went pee while we were out with her.  We didn't spend too much time outside but did do drawing wars together, something we haven't done in a while.  Good for me to practice drawing, not something I am good at.  We also played darts and if Marlon gets a good score he is all over the place celebrating and raving about it.  There is a handwritten note above the dartboard saying that he holds the current high score and what it is. I will be waking Marlon up early in the morning to head to the hospital.  It has been a nice break! Marlon is happy with his basket of feathers