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Maech 8, 2021

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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.

March 7, 2021

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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.

March 6, 2021

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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 together.

March 5, 2021

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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 gutted like he feels he is being. Let the cravings begin!  With t

March 4, 2021

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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 animal, a red squirrel I think.  It flew off into a clearing in th

March 3, 2021

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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!

March 2, 2021

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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 we started treatment.  Thank goodness th