Tuesday, January 5, 2010

If It Quacks...

I now know why they call it "practicing medicine".

So, most of you know the story, but since I get so tired of repeating myself (not meant to make anyone feel bad, but telling the same story over and over does get old...sorry) I am going to tell everyone what happened to us as thoroughly as possible.

On Thursday, December 17th we met with Lisa Keller (NP) and Margo Hoover-Reagan (Primary Onc) at the AFCH.

We ran into Dr. Catrine on our way in, and had a nice chat with her where we then discovered she was leaving Ped Oncology to work with kids on the fifth floor, and end of life care for children. We are sad to see her go, but know she will do wonderful- she is one of the most amazing doctors I have met in my life.

After chatting with Dr. Catrine, Lisa and Margo came in and sat Kevin and I down and explained our options based on the latest MRI and CAT.

After much consideration, Kevin and I made the heartwrenching decision to go with surgery. We based our decision on the predicted outcome, and the ability to determine if the tumor was dead/dying.

They scheduled Charlotte's surgery for Tuesday morning, the 22nd- yes, three days before Christmas.

The reasoning behind THIS was the surgeon we wanted would only be at the hospital until the 26th, and then would be on vacation for three weeks after Christmas, and, let's face it, we couldn't sit and stew over this for three weeks without recanting our decision.

Then I got the phone call from the surgeon explaining the surgery.

I was so blindsided that I forgot the list of questions I had for him.

I was thrown off with words like Dura (the layer of tissue enclosing the spinal cord) and Hemilaminectomy (the process of removing part of the bone on the spine to gain access to the tumor). But the one word that struck me was spine- Woah woah, wait a second... Lisa and Margo had told us they wouldn't be anywhere near her spine...

That pushed me to call Margo back and question HER, who then called the surgeon to question HIM, who both then decided that one- her tumor had been measuring incorrectly in the first place for total reduction (because, apparently, there is a specific way to do it according to the study she is in), and two, Margo didn't think the surgery would be beneficial anymore. The risks outweighed the benefits, so to speak.

They were going to reassess her tumor shrinkage, and get back to us.

Tuesday morning rolled around, and we didn't feed Charlotte according to surgery rules, and I finally received the phone call at around nine a.m. confirming what I had dreaded- that over the last week all of the heartache and headache and painful decisions were completely unwarranted. The tumor had now shrunk too much for surgery.

You would think we would have been relieved to hear that- well riddle me this:

How can you be relieved when the people you have trusted with your child's life the past seven months basically effed up?

Medical practice- because occasionally we DO get it wrong. And my personal favorite- well, medicine isn't an EXACT science.

But here is the other funny thing- I'm also not as mad as I thought I would be.

Because Charlotte is in such a gray area, we have NO definite answers as to what our next move is. We are stuck at an impasse- and now I received an email from Lisa telling me that they are presenting her case to a commitee within the hospital on this Wednesday, the 6th of January, and we should have some options then. She will be calling me.

All well and nice, and everything is back to "normal"... I hate that word, by the way.

And while we are waiting, you should know a couple of things:

1. We don't want to do chemo. Without any sort of idea whether that tumor is shrinking, growing, dead, dying, staying the same- whatever, it's still adult poison medication, and we don't want the risks that come with that. Who wants to beat a cancer only to have another one spring up a few years down the road? Or to have to explain to their child when they are older how they "Just might not be able to have children of their own" because, hey, we were playing it "safe" and decided to give you a couple extra doses of that good ol' chemotherapy.

2. Charlotte has FULL leg function back- that's right, you heard it here first! She is standing, crawling, climbing stairs, and trying to walk. Look out world, hello bruises!

3. Charlotte has her hair back! I know how utterly trivial that sounds, but you cannot FATHOM how uplifting it is to cuddle her (inasmuch as she will allow you to cuddle her) and rub her little fuzzy head under your chin. It is more soothing than a lavander bubble bath on a cold day...

So that, in a nutshell, is what's going on.

And hopefully I have some good news tomorrow.

Thanks for reading as always-

Kristi Rufener

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