Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Wednesday, October 23, 2013

Tip for the completely insensitive

Which I know none of my readers are.  I just want this to be out in the world so that maybe someone insensitive will read it before saying something similar.

I was on the phone with someone as close to family as you can be without being actually related and I said something about how shocking Geraldine's diagnosis was because we were all sure her test would be normal because Anne's test for the same thing was normal.  And then it wasn't.

And this person said "Well, she's going to have more problems."

And THAT, you do not say that.  The problem she had occurs in isolation.  It happens early in development and it's not something that means she has multiple tumors in her body.  She had one and it is gone.  It could come back and it could come back malignant but she is very closely watched for that and if it comes back it will be caught very early and killed very early.  The cure rate for that cancer is about 90% and a lot of the deaths are in kids who weren't diagnosed initially until after the 2 month mark when the malignancy rate increases to 5x what Geraldine's was.

She doesn't have risk factors for anything.  She's developmentally on track, she is happy and growing.

But after what she has been through it is very hard to not worry that everything is a sign of another problem.  And that is why affirming that fear is nothing but cruel.  I don't know when I will stop staring intently at her trying to be sure she's alright.  I do know that time hasn't come.  Perhaps when she is 3-5 years old and is cleared from follow-up (or it is reduced to annually, not sure about what happens).  I'm sure then we will feel anxious for a while about what if it is growing and we don't know? 

Compared to other diagnoses, diagnoses that we were given as potential causes of her tumor until she had an MRI to determine the type, all of this is nothing.  One cancer that was possible is extremely fatal and extremely evil on the way to death.  It's probably one of the worst ways to die in childhood and I can't tell you what it felt like to see that on the list my sister had scrawled.  Had it been that we would have been spending time saying good-bye about now and that would have been infinitely worse.  But you also can't go there.  It's too hard.  You have to stay focused on what did happen and what you pray won't happen.  You certainly can't focus on made-up things that could go wrong.  (There are no syndromes or related illnesses related to her tumor.  This statement is just something he has decided).

Not a good thing to hear and I'm writing this so I can let some anger out.

1 comment:

Michal Ann said...

I sure hope the "insensitive" person doesn't share opinions with your sister and brother-in-law! Could you give the IGNORANT person some of the correct information? I can't help but wonder about the MOTIVATION behind saying something like that. Hmmm..

It's so exciting to hear that you are WELL in some significant respects! You're in the midst of some pretty exciting times with the new home and belongings coming soon! Your MEDICARE CARD and Topimax adjustment is fabulous news.

Very glad to hear that you're in a good place with your loyal and loving Dr. Mind. Really wonderful.

Hugs, Michal