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Hah! Back so soon?

www.46mommas.com
First things first......  Today we celebrate our First Born.  Twelve years ago, today, Curtis came bounding into our lives.  Forever changing who I am.  He is my oldest, my first born, my dream come true.  Happy Birthday, kid.  I love you more than you could ever imagine.
Curtis ~ Thanksgiving
Getting pictures of this kid, these days, is nearly impossible.  This is the best that I can find!  Turkey hates the camera.

Secondly......  I am angry.  So mad and pissed off.  Gregory had his six month eye exam today.  We are monitoring his cataracts every six months.  The records have not been received from Seattle Children's, yet, so the doc couldn't compare the progression.  The records are in process and should be received, soon.  The part that I'm angry about, came as a uncomfortable surprise.  Gregory's correction has changed slightly and his astigmatism has worsened dramatically.  I was not prepared to hear this news.  It was not expected.  He needs new lenses for his glasses.  This change could be his normal progression of vision, but the doc thinks it's most likely due to his cataracts.  Cataracts change the shape of the eye, hence the change in vision.  I don't know enough about cataracts to have anticipated this change.  As much as an information gatherer I am, I can't learn it all or be ready for it.  I guess this is the root of it.  While this is a minor thing, in the big picture, it's just another aspect of Gregory's treatment and something else I need to be vigilant about.  I mean come on!  Who goes to the eye doctor every six months!  Then.... if you do, who has to have their lenses changed every six months!!!!!  At the age of 5!  Just another thing heaped onto Gregory's health and life.  A small thing...... I  know, but..... another thing.
I'm also quite tired of being a minority.  Whenever Gregory is seen, outside of Seattle Children's and Seattle Cancer  Care Alliance, his medical history is alarming to people.  People in the medical field.  Granted, Childhood Cancer is not seen too often and Pediatric Bone Marrow Transplants, even less.  I'm just asking that the medical professionals quite reacting with shock and disbelief while discussing his history and current status.  Today's example was the tech who did his initial eye evaluation.  When discussing his cataracts, after I had told her he was a BMT patient, she assumed his cataracts were congenital (from birth), when I told her no, they were treatment and steroid induced, she did that little, widening of the eye balls, slight jaw drop and a jerk back of the head.  It was a noticeable reaction.  This is not the first, nor the last, just the most recent.  I realize Gregory is in a unique situation.  I work daily at making some sort of peace with his health.  These kinds of reactions are a reminder that he is far from normal.  It's a natural reaction, but I would like to see a little more professionalism.  If you have questions, please do not hesitate to ask.  I am an open book when it comes to frrank and honest communication.  It's the only way to learn.  I know this is a traumatic thing to think about, I know I've had nearly two years to be "comfortable" with this, I know that YOU are just now learning about Gregory and maybe this is even your first exposure to Childhood Cancer and Bone Marrow Transplant.  Still, we are more than the diagnosis and treatment.  We are more than the symptoms and late effects.  We have feelings, eyes, ears and memories.  Can you tell this hit a soft spot for me , today?

Today I also was given information regarding the state of Arizona.  Their legislature just recently ended Medicaid coverage of Bone Marrow, liver, kidney and some heart transplants.  Condemning people to death, based on false information.  The story can be found here.  Please take the time to watch the video.  In the meantime I will be researching what kind of action can be taken to help the state of Arizona's residents.   Regardless of your political views, this is devastating news.  Please don't respond with finger pointing.  There will always be finger pointing, someone blaming someone else and vice versa.   This gets us nowhere.  The best course of action is to get informed, share the information and act.  Don't quite know what the action part will be, but I will find it.

Thinking about all of you, out there.  Holding you close, surrounding you in love.  'til later.  Gotta jet!

~Mindi
Momcologist

Comments

( 1 comment — Leave a comment )
(Anonymous)
Dec. 1st, 2010 08:41 pm (UTC)
Happy Birthday Curtis!

Mindi, I so hear you. I hate that so much. Professionalism. Yes, that is exactly what is called for. At the same time I try to remember that they too are human. But it hurts to see people flinch. When they don't, I adore them.

Much Love, Jess
( 1 comment — Leave a comment )

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