Lovingheart

Thursday and Friday felt a little hectic with emails and the timing of the next few weeks being spelled out more clearly.  Something that has been hanging over our heads is taking shape. And then we fall into another “normal” weekend.  Marlon spending most of it with a friend and enjoying feeling fine. We have talked about doing something special before radiation begins but no specific ideas on what that might be.  So if nothing else hopefully he'll get time with friends. I have seen a snake a few times in the last week.  Hoping it stays safe from the dogs.

We had our video call with the radiation team at sick kids.  Next week he will be “fitted” for it.  Placed in the machine and getting a mask made for the brain radiation.   After the call, Marlon felt they didn't have too much negative to say about side effects so he thinks they might not be that bad.  The focus of the call was not about how he will be feeling but they did say that it is a low dose radiation.  There is a small chance of more serious side effects but didn't touch on the less serious ones.  In a small percentage of cases (I believe I heard 2%) there can be cataracts, another cancer that develops from the radiation, or issues with the brain. As the doctor pointed out the other day, the cancer has relapsed so the overall treatment is more aggressive. The sun was going down but the light was reflected in the cloud which was framed by the trees.

While at the hospital yesterday, I asked the doctor about radiation and how it would affect the brain, memory, and intelligence. The hope is that any side effects will be short term but it is possible that memory and brain function will be affected.  Higher dose radiation as in cases with brain cancer and tumours have worse side effects.  His dose will be on the smaller side. While Marlon’s primary oncologist is a good doctor, she does often talk in worst case scenarios so I guess like all of this we just have to hope for the best. When she was talking, I was talking it in, feeling nervous, and paying attention to Marlon and his reactions.  Afterwards he said he was watching me for my response. In the end, neither of us was thrilled but we want to know.  There are a lot of crows around here, some with very distinct caws.  I did a double take when I saw them on the the railing on the top of the building.

Today was a base line testing day.  I think of sports where they often recommend a brain base line test for each individual that you can review in case of a trauma to the head. There are several potential side effects from the bone marrow transplant. They want to be aware of the starting point. First off was the Full Pulmonary Function Test (FPT).  The one entailed sitting in a booth, breathing into a tube, testing lung function.  Different breaths, different resistance.  Marlon struggled with this as the person administering the tests was a little abrupt.  He reacted and she called him out on his attitude.  My sense of it was someone who has been doing their job for a while, had the same explanations and same motivators.  And we were told off for being late.  We were running a little behind but after spending 15 minutes looking for a parking spot in the garage that didn't help. Then onto clinic for dressing change and his final bag of blina. The ...

Marlon has been part of a D&D group that has gathered on Saturdays for a couple of years.  After he became sick back in April the others didn't end up meeting very many times - different priorities for some of them.  He was looking forward to going again today and was waiting for the bus to take him to Guelph when he heard it was cancelled yet again.  Maybe in the new year he and some school friends can create a group.  They did have one going at the school and maybe that will start up again. When I mentioned D&D to someone a while ago they said Dine & Dash.  Glad to say it is something more honest, dungeons and dragons. Wispy clouds in the night sky  

Hospital visit was on Tuesday.  Different going onto the ward.  The clinic has many patients going through each day.  Cancer outpatients that are getting their chemo, dressing changes, blood work, or related things done.  A different pace for the nurses on the ward compared to the nurses in the clinic.  The clinic nurses know that Marlon likes his dressing changes to be done quickly.  They are used to the pace and keep up.  On the ward, even the dressing changes become more of an ordeal and there are often two nurses together to help out.  Either way, great nurses all around.  Marlon’s least favourite nurse is “too nice”.  He finds that irritating. He did notice on Thursday that one of the PICC lines had blood in it.  It probably hasn't been properly flushed.  I did email the nurse that we keep in touch with and it isn't a big deal.  I was glad to hear it.  The fresh dressing and the two lines.  The bottom one is...

Before leaving for the hospital this morning, I noticed the daylilies around here open with their varied shades of orange.  On the way to and from Hamilton, we saw several daylilies.  It's their time.  We are lucky that Marlon's primary hospital is McMaster.  A more pleasant drive than the one to sick kids.  Even though it's a holiday his dressing still needs to be changed and the blina bag replaced.  The oncology clinic was closed but we were scheduled to show up on the ward.  See some of the regular people that work there.  All is well.  Afterwards, I dragged Marlon along for more strawberry picking.  What a disappointment compared to the last time.  The berries were sour tasting and either not ripe or mushy.  Their prime season is such a short one.  The fireworks are happening and Pan is oblivious while Mina is panicking.