Posts

May 8, 2021

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Four years ago we had my mom's (MOMA - Oma with the M in front for mom) afterlife party.  Since I am uninspired for today's picture this is from then. Once again, Marlon didn't go outside but I think he had a good day.  Reading, playing Minecraft with friends in the morning and his brother in the evening, and other assorted things.  He was in a good mood and just more Marlon. Always nice to see.  Not a bad thing that there isn't much to say!

May 7, 2021

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When Marlon walks, he is hobbling and limping along.  It looks awkward and almost painful.  He is not in pain.  His flexibility still isn't the best but I remind him, again and again, to walk normally.  It will come. He came for a little walkabout outside.  Equivalent to maybe three times around the house, and by the time we came back he was in tears. An attempt to make a hyperbolic paraboloid Closest he's come to doing a proper drawing in a while. A minecraft pig.

May 6, 2021

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Marlon was stressed this morning at the thought of being accessed again.  We did not know ahead of time how things would turn out.  As it were, he did not need any blood products.  His platelets were 22, so down from Monday but above the 20 cutoff.  Hemoglobin and neutrophils continue to slowly climb.  A quick in and out hospital visit. Because of the hospital stay, his chemo is behind but next Tuesday he is supposed to start the last 8 week round of chemo before he enters maintenance.  To start, his platelets need to be 75, so it is very unlikely he will be ready to start next week.  He may get an even longer break again.  No harm in letting his body build up again.  Delayed Intensification is done but the next phase has a fair amount of methotrexate.  While I originally viewed it as milder chemo, I have learned more about it and am more concerned.  It is the doses of this drug that go to the brain that can cause seizures.  Cancer treatment is challenging on so many levels. Marlon was

May 5, 2021

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I often remember the night Marlon was in emergency and the resident doctor (student) came on and she had a nice manner, seemed professional and comfortable.  Then when Marlon's heart rate was very high and his fever spiking over 40 and he was out of it and moaning.  She wasn't sure what to suggest.  She kept falling back on pain relief.  Several times she mentioned giving him painkillers.  I had no idea what he needed but I knew pain relief was not the answer, not even close.  The main doctor came on the scene just before Marlon had his seizure and started barking orders and taking action.  Having Marlon rolled to the other room, and asking for liquids and meds and blood products.  And I think of the resident doctor, knowing I would never want to be in that kind of situation.  I wonder how it was for her.  To feel so lost and out of your depth.  I relate as I felt that way, but I was not there to know what was going on. Another thing I remember is that as the initial seizure ea

May 4, 2021

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How quickly we put the hospital behind us and fall back into home life again.   Since we got back I have done several loads of laundry.  At the hospital, it was all handwashing so now making sure those items get a good wash.  Paco and Linsy were constantly fiddling and adjusting in an attempt to keep the cat out of Marlon's bed while we were away.  He was very persistent, jumping on the desk and breaking through barricades.  I made sure the bedding got washed as well.  In the middle of the night, I heard the cat start his burrowing onto the bed and tsk'd him away.  It worked.  His other favourite place to sleep is behind Linsy on her chair so she is often sitting on the edge of her seat.  Not so comfortable.  Here I just moved him from that spot and gave him a cozy alternative. While away, Marlon's Kiwico kit arrived so he made his animation machine today.  He is doing well.  Walking looks awkward but I believe his blood counts are ok.  

May 3, 2021

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Home sweet home! Marlon was in the hospital for 12 hours shy of 3 weeks. His recovery is continuing on a strong upward path.  His platelets actually went up to 25 today from yesterday's 24.  First time in a long time they went up without a transfusion.  This means his marrow is back at work again.  His hemoglobin (89) and neutrophils (1.3) went up as well. Instead of requiring us to return tomorrow, Marlon was given the chemo today and doesn't need to go back until Thursday for a blood check. Good to see everyone at home again.  It will be nice to sleep in my bed.   The drive home was emotional as I kept remembering the last time we drove down that road. Middle of the night and I had him beside me on the reclined front seat (he still sits in the back), so I could keep an eye on him.  What a change!  Thank goodness he is much more himself again.  He needs to rebuild his strength and his walk is awkward but he is ok. Silly boy

May 2, 2021

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Marlon has been getting TPN, liquid nutrition through his port to help with the fact that he wasn't eating and then slowly reintegrating food into his diet.  Last night was the last of it. All the steps are falling into place for him to be sprung on Monday. One med, he gets one pill morning and evening.  The other he gets 2 or 3 pills every 8 hours.  This means he is woken up at midnight with his pills carefully hidden in 3 small bites of ice cream which he swallows.  The first night I was nervous, wanting to know for sure he was swallowing them and wasn't going to choke.  He barely wakes up but gets them down.   In the morning, they will check his blood and he will either get platelets or not and then be cleared for takeoff. Likely returning to clinic on Tuesday for chemo and then platelet check later in the week.  His neutrophils are continuing to climb. In the afternoon, Marlon sat in the wheelchair and I pushed him around.  Some trails, some sidewalks, but he was outside fo