Monday, November 30, 2015

A Boy and His Hero

As I was helping Klaus get ready one morning I asked him if he knew his full name.  He responded enthusiastically, "My name is Mini-Matt!"

Klaus is a lot like his Dad.  He must have remembered me calling him that some time ago.  He loves his Daddy.  He always has.  Klaus is a sensitive boy.  He loves me too.  In fact, he wants to marry me.  But there is a really special bond between Klaus and his Dad.  The way Matt's parents described Matt as a child, it reminds me a lot of the way Klaus behaves.  He is super cuddly and snuggly.  He still climbs into bed with us at night!  It gets awful crowded sometimes!

Klaus is also a special challenge.  He does things his own way.  He is not interested in playing with toys the way the other kids are.  He requires a lot of attention and affection.  I have been exasperated by him at some point every day for the last few years!!

And over the last two months since the big C diagnosis, Klaus has become more and more difficult to deal with.  He whines constantly and acts younger than his age.  He wakes up grumpy, acts lazy, and spends a significant portion of his day unhappy about something or another.  He gets sent to his bed a lot for making grumping sounds (which I can't stand) and yelling at us instead of talking politely.

Earlier this month during a rare moment of quiet and peace in the living room (the older kids were playing in their own rooms), Klaus curled up and snuggled in his Daddy's lap.  As I nursed Maggie in the rocking chair, I was able to listen to their heartfelt conversation.  I can't remember the exact words but it was something like this:

Klaus, quietly: "I'm worried."

Daddy, "What are you worried about, Klausie?"

Klaus, even quieter, and practically in the fetal position: "I'm scared."

At this point, my full attention was on this conversation.  I was so thankful for the unusual quietness of the house and for the opportunity I had to hear Klaus finally put into words some of his feelings.

Daddy, "What are you scared about?"

Klaus, "I'm scared that you will die."

Did he really just say that?!  Matt and I looked at each other.  Could this 4-year-old who previously had never mentioned anything whatsoever about cancer or sickness or treatment or anything related to Matt's diagnosis just voice with clarity his concerns about his Daddy's life?!

Matt then reassuringly explained how his treatment would help the disease.  How the radiation would kill the cancer cells.  How the surgery would then remove the cancer from his body completely.  How his doctors are caring for him in the best way possible to keep him alive and healthy.  As I listened, I felt Matt broke it down perfectly for Klaus' understanding and reassured him tenderly.

Klaus, "They will remove the cancer from your bum cheek."

Daddy, "Yes, so that all the cancer is gone and I will stay alive and be healthy."

There was more to the conversation.  There were more sensitive and sweet words exchanged affectionately between father and son as they embraced each other in the silence of the living room.  I got to witness this reverent exchange and I can't stop thinking of it and weeping over the beauty of it. I consider it a miracle.

This 4-year-old who has been getting into trouble for acting out, bellyaching incessantly, and very difficult to live with has been worried.  And scared.  Scared that his hero might die.

With this miraculous exchange on my heart, it's been easier for me to be more understanding and patient toward this delicate boy.  When I see him, I see such a small and concerned child.  What a tender mercy.






Tuesday, November 17, 2015

What a Roller Coaster

This whole cancer thing has been quite a roller coaster.  And treatment hasn't even begun yet!  I've decided that cancer is stupid.  Sometimes I just want to shout it out loud, "Stupid cancer!!!"  That's my way of swearing.

A lot has happened but I'm usually too tired at night to update the blog.  Matt asked for and received approval for a PET scan.  He got the results on a CD.  He spent a few hours analyzing the results and the two of us together spent over an hour looking at all of the glowing things inside his body.  The more you glow, the more cancer there is.  Boy, looking at it ourselves was a mistake.  I worried too much waiting for the results of that scan, far too much.  I was sure he had it in his spine and various other body parts.  But the results came back and THANKFULLY there was no spread.

Then we went to the radiation oncology department at St. Joseph to consult with Dr. Goins who will be in charge of Matt's radiation.  We thought he would start treatment that day.  Ha!  Not for another two weeks.  She appears to be a competent doctor.  One thing she said which I didn't like to hear after examining Matt was, "Oh, that is a very bad location."  I think she was referring to the possible side effects he might endure, namely skin burn and diarrhea.  I am so worried about him suffering through this.  Some people don't have any trouble with radiation and some people suffer fatigue and burn and other side effects.

His radiation treatment starts tomorrow, Wednesday, Nov. 18 and goes through Dec 23.  It is low dose IMRT radiation for 25 treatments.  There are so many details I should be including but I am too tired to write them all down, sorry.

Four to eight weeks after radiation is finished, his next (and last?!?!) surgery will be scheduled.  That means it will probably be February.

Another point I really didn't like and that has been weighing on my mind was in Dr. Myron's report which we accessed at home.  He didn't say this to us directly but reported that this cancer has only a 35% long-term survival rate.  Didn't I say cancer is stupid?!!!