Thursday, October 30, 2008

first pediatric oncologist appointment for JD

Sigh... what a day. My heart is heavy and my mind racing, but what do you expect in a situation like this? Anyway, here's the run down of the appointment:
We met the pediatric oncologist, Dr. Goodman, who is 10 days away from having a baby. Irrelevant, except that we'll be seeing her partners for a period of time, and planning with them as well, for the most part. She will be consulted, from what I understand, but not present. Without replaying every bit of the 2.5 hour appointment, I'll give you the basics.
- JD will be having an MRI of his spinal cord tomorrow to make sure that it has not spread. We will have the results of the MRI by the end of the day tomorrow.
- The next step will be surgery #5 to remove the tumor. After Tuesday's (10/28) appointment, we thought surgery was not an option... It is no longer an option as a 'simple' fix-all, but will make further treatment much easier. It's easier to treat nothing/minuscule amounts than an eyeball sized tumor. And it gives us more time.
- From there... we wait on the pathology of the tumor. This will ultimately determine the plan of action. They said it would most likely be 3-4 weeks following surgery before they started chemo (assuming that's the course of action taken) to give JD time to recover.
Really, it's hard to give any definite information, as we have none and will not have any until we have the pathology of the tumor. Like I said, we'll know the results of the spinal MRI tomorrow (BE PRAYING THAT IT'S CLEAR!!!!), and hopefully we'll have surgery scheduled as well.

A few things of note, and forgive me if I'm using incorrect terms or my wording is wrong... after all, I was only an aspiring nurse before I, ahem, became a stay-at-home mom. :)
The type of tumor that JD had/has is called a pleomorphic xanthoastrocytoma, PXA for short. This typically is a slow-growing, low grade (benign) tumor. I don't fully understand how it all works or what it means, and I don't want to look at anymore tumor-related information tonight... but the pathology of his earlier resections showed 6-8% dividing... making it a low-grade, slow growing tumor, like expected for the type. This last resection (10 weeks ago) showed 20-30% dividing- a significant increase. The dividing has something to do with the tumor cells (duh), but I don't know if it deals with how many or how quickly or both or what. Sorry. Long story short- it is no longer acting like a low-grade, slow growing tumor. It is growing quickly and aggressively, acting malignantly, and so we must treat it as such. Thus the reason for quick surgery, followed up with chemo and potentially more radiation. We just don't know details of that part yet.

Please, please, please... just keep praying. We've got a long, rough road ahead of us. I wasn't prepared for the emotions I'd feel reading a little kids handwritten 'Cancer stinks!' scrawled on a bulletin board in the cancer center where our consultation was, or what I'd feel seeing a poster for the website. It all seems surreal, like it's someone else, something else... not my little brother. But then, I realize, this is real... and it is hard. Pray for wisdom for the doctors and my parents as they make decisions regarding the care he will recieve, for strength for us all, peace, comfort... And thank you, again, from the bottom of my (and my family's) heart. Your love, kindness, and prayers do far more than you could ever realize.


  1. Hey Kristen,
    Caleb and I are praying for JD and his family and you and yours. I can only imagine what you are feeling right now, but just remember that God will not give you anything you can't handle. (1 Cor. 10:13)
    If you need anything, let us know-Caleb and I have been thinking about you and Jordan a lot lately, and Caleb would like to meet you all sometime! I show him the pictures of Corban when you put them up!
    We are praying for you.

  2. I'm sorry this is so difficult. I cannot imagine dealing with something so terrible.
    "May the peace of God, which surpasses all understanding, guard your hearts and minds in Christ Jesus." Phil 4:7


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