Thursday, December 17, 2009


Here is the usual "It's been a while" cliche, followed by the boring updates that have occured since the last time I updated my blog...

Except that it hasn't been so boring and mundane, and my life is anything BUT cliche- in fact, I don't think there is even room for cliche when cancer is involved.

That being said, since my last post Charlotte completed her chemotherapy, and went into the next phase of her study, the surgery consultation.

So, Kevin and I met with Doctor Hoover-Reagan, and Lisa Keller today at the Children's Hospital to discuss what our next course of action would be.

We were basically told we have three options:

1. We can surgically remove the remaining part of the large tumor (about two inches by a half inch), biopsy that piece, and if it is cancer free, we accomplish remission. (Also note that there will be remaining tumor around her spinal cord in the spinal column, that particular part is considered inoperable due to its location)

2. We can take the "wait and see" approach, in which we get MRI's every three months and wait to see if anything changes. The negative aspect of this is that if the tumor would start growing back, we would be in for a helluva ride... We would run the risk of the cancer being more resistant to chemo, and possibly paralyze her again- assuming it grows back into the spinal column.


3. We can do a simple biopsy, where we would run the risk of accidentally taking a sample from a dead part of the tumor and missing a "live" part, thus getting the false impression that the tumor is dead, when in actuality it's still alive.

So, how do you decide?

This isn't the doctor cutting your child's umbilical cord, this is a real-life slice and dice surgery, with general anesthetic and stitches, blood and guts and vital organs. One sneeze that could cut an artery by mistake. surgery?

So you decide to wait it out, take the "safe" road, only to find out later you made the wrong decision and now your baby could die?

Well, I'm not going to keep you in suspense. Kevin and I did decide to go the surgery route, though I can't really tell you why. It's not as simple as a cut and dried pros versus cons situation, but more of a title thing... To me, at least.

To me, I want what we have been fighting for since day one... our remission.

Lisa is going to call us in the morning to see if we can get her in Monday- if not, it will have to wait until after Christmas.

I didn't get what I really wanted for Christmas this year, but at least I still have a baby to smile at me, who's sweet tuft of hair that's finally growing back tickles my nose when I smell her head, who's toasty hugs and sloppy kisses make every day worth waking up to.

And as usual, when I know more, the rest of you will.

Sorry this isn't as cheery and upbeat as usual, I'm sure you understand. It's taking the last bit of my energy to update all of you.

We are all okay, just tired and drained.

As it turns out, being disappointed takes a lot out of you.

God bless, and I will update tomorrow when I hear more.

Kristi Rufener


  1. As always you are in my prayers! If it would have been me I would have made the same decision! I am here for you always even though we don't talk as much as we used to! Please call me if you need a shoulder or anything! I am waiting for your updates with my skirt on so I can do some more of those cartwheels when I hear more good news about that little sweetie!

  2. Hi Kristi,

    I am a fellow Feb 09 mama and read about your story on the Feb 09 Babycenter birth board. I have been following your story ever since. I think it struck a nerve with me not only because our babies are born in the same month, but because I used to live in Madison, work at the Waisman Center, and volunteer at the old Children's Hospital. I hope you don't mind, but I went ahead and updated your original post about your surgery plans as I know, even though you don't post there much anymore, the BBC ladies would love to send their thoughts and prayers your way.

    We are thinking about you and your little one and hope you guys get the good news you are hoping for with this operation.


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