Posts

May 18, 2021

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Once again Marlon's neutrophils were too low to continue with treatment.  Still at 0.4 and need to be 0.5.  His platelets doubled again and are 312, a far cry from 5 weeks ago when they were 1.  They will try again on Thursday. It was still morning when we got back from the hospital.  I am enjoying the nice weather and it is nice that Marlon can get outside easier but he can't handle the heat.  Last summer, when he was sick but before we knew what was happening, he couldn't handle the sun at all.  He prefers to go out for several short bursts. There were books waiting at the library so I enjoyed the walk there in the afternoon. Boat, knight's helmet, and a fox

May 17, 2021

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I was feeling grumpy this evening because it seems every time I turned around Marlon was plugged into some device or other.  He did do some other things today but somehow I am hoping he gets inspired to do a bit more than he is.  Not sure with what or how. I also need patience. To be fair he did a few origami creations, went out with his RC vehicles, and threw his boomerang around.  The other day he caught the boomerang and he is hoping to be able to again!  Not very easy. He also wrote me a shopping list.  I feel that, during lockdown, I shouldn't be making so many trips to the grocery store but every couple of days there is something he just has to have. A pterosaur, angelfish, and box.

May 16, 2021

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I was thinking how lucky we are we live in Canada.  I am not so sure we would have had medical insurance had we lived in the States.  Once again, so much to be grateful for. This afternoon, Marlon had a friend come over.  They kept their distance but played with remote control vehicles, both flying drones, and rolling land ones.  It was not a long visit but he was tired afterwards.  A rare treat to see a friend and be somewhat physical. His appetite is almost as if he is on steroids.  He is often thinking about food and eats a fair bit.  He gets a hankering for a particular food and keeps asking until he gets it.   This is from a year ago.  He calls it Playgo-mation.  Using Lego to create scenarios on playdough.

May 15, 2021

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A peaceful, uneventful day.  No complaints there. Marlon has a good appetite lately and has all sorts of food requests.  Not always the healthiest of choices but not the worst either.  He was pestering me for pie, so yesterday I went to Sobeys and bought a blueberry pie.  Now I am thinking if he wants to continue to enjoy pies, we should try our hands at making pie crusts, something I have shied away from.  I continue to see his tastes changing day by day so I need to remember not to get caught up in what works today.  It will change. We have played some frisbee, never for long, but I know that will get better.  He was commenting today that he has played less frisbee than me but is better.  True.  Not something I have excelled at. After dropping Linsy off at work today, I saw a turtle crossing the road.  It looked very black on top.  Maybe mud? When I went to pick Linsy up later, I didn't see any signs of the turtle so I hope the eggs were laid in peace with a successful return hom

May 14, 2021

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Marlon helped plant carrots today.  Thomas commented that Marlon can get down ok to plant the seeds, but getting up is the hard part.  The other day the two of them were talking about getting up from the ground and how it isn't always very easy. At bedtime, Marlon asked what the point of life is.  This comes on the heels of an emotional day.  One where I was wondering what I am doing and feeling sad and when feeling sad the faults seem to be more noticeable.  Did I really say this? Do that?  Think this?  But I answer that we look for joy in life.  And Marlon mentions the two big C's right now and I respond that we can still do the best we can, look for the good.  And Marlon asked if people that littered were not being the best they can be.  What about the planet?  And the roller coaster of the ups and the downs and the good and the bad.  We all have a dark and a light side.  None of us are perfect. In a strange way that heavy conversation lightened the day. A while ago I mentio

May 13, 2021

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For the past while, to deal with the various infections, Marlon has been taking several pills.  He was taking 8 of one split up three times a day.  I may have mentioned before giving him pills while he is sleeping.  Yesterday was the last day of that!  That particular pill, he will now be taking three times a week, twice a day.   I feel like the past couple of days have been definite steps forward of strength and endurance.  He can stay on his feet for longer periods of time and can walk up the stairs with only a little struggle.  He is sturdier. I have been reading a book to him and it seems every paragraph he interrupts for one reason or another.  The most recent part of this book talks of Greek gods and Marlon knows a lot about them so he always has something to say. Speaking of books, a while ago I was at the bookstore picking up books I had ordered for Marlon.  I saw a book I felt attracted to but knew I don't often find the time to read books.  I found it on the Libby app in

May 12, 2021

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Last year, when we were harvesting potatoes, Marlon wasn't able to help much but he pointed out that he planted most of the plants in the spring when he was still well.  Today we put some potatoes in the ground and Marlon was able to help.  I am sure he was slower than last year and ran out of steam fairly fast.  But still, he was out helping in the garden.  I am hoping he will be up for helping more tomorrow especially since there may be some carrots planted and he loves to eat them fresh from the earth. Mr. John Smith, and his sheepdog and some star fold. I liked the sideways picture. Walked to the library to pick up a book waiting for Marlon and he spent a long time working his way through it.  Always glad to see him read.