September 10, 2020

September 10, 2020

I often say we are doing our best to take it one day at a time.  If I think about today compared to yesterday.  If I think about all that is to come.  If I think about the many struggles in a day, I understand.  I understand how taking it one day at a time, how dealing with each struggle as it comes is really so much easier.  If I think to myself we have at least 3 more weeks of intense treatment it is overwhelming.  If I think of each meal's struggle to down the necessary pills and the support required to keep it all down it is overwhelming.

Each day as it comes.

For the first part of the day Marlon we not allowed food or drink because he was to be sedated.  During that time we had a visit from the dietitian speaking of food.  Marlon got several food cravings from that talk.

Then Marlon was put to sleep.  Lumbar puncture and a new needle in the port with new tubing.  Yesterday Marlon had a blood transfusion and the tubes still had some red residue.  Either way these get replaced weekly.

Marlon wasn't awake for lung when I went off for a scheduled meeting with doctors and Thomas and Linsy on zoom. Maria, the Child Life support person stayed with Marlon.

Talk of helping Marlon to be able to take oral medication and the results that came back yesterday.  Philadelphia leukemia or myeloid leukemia.  More rare and does not respond too much to chemo.  In the past it would have meant bone marrow transplant.  Now there is a pill he takes daily and we hope that works.  If no improvement in a month then marrow transplant. It was also decided Marlon will stay in the hospital until next week to give him a chance to stabilize with all the changes.

In the afternoon two different chemo drugs pumped in.

Considering all day's treatments, today was an ok day for Marlon.  He dealt with the discomforts.  He took his pills and kept his food down with lots of encouragement. So while not happy or 'chipper' he was able to achieve.  We washed his hair, he walked to the washroom a few times, he ate his meals, he had computer time and we played cards together.

Each day is unique!


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