Wednesday, June 9, 2010

Decision time

These last 2 days since we got the pathology report have been the hardest for me; I've been trying to process what we've been told, and it is overwhelming. It was easy to sign the consent for the brain surgery; Kol was in pain, and would have died without it. But this next decision is tough. Not only do the treatment recommendations from the oncologists seem to be quite aggressive, but because this type of tumor, in the place that it is, is rare enough that they really have no clue whether or not it will respond at all to any kind of treatment. I don't know how I can agree to put Kol through months of pain and sickness if it's not even going to do anything. But how can I not?

Here's some more info about the tumor, as I understand it at the moment. This is subject to change, because there is a very good chance I missed something, or misunderstood what we were told. The tumor itself is a neuroblastoma sub-type of a PNET tumor. I have it written down somewhere what PNET stands for, but I forget now - I'll let you google it if you want to know more. I'll be doing that too, soon. This kind of tumor is rarely seen in the brain, and are usually in the lower area of the brain. Kol's was near the top. Tumors where Kol's is don't respond as well to treatment, although the neuroblastoma sub-type does tend to respond slightly better to treatment elsewhere in the body.

The cancer clinic belongs to a group of treatment centers called Children's Oncology Group (I think) that collects and shares data on different types of cancer and the different treatment protocols. Any center that belongs to this group - which appears to be most in North America - will recommend the same treatment.

I'm falling asleep, so I'll try to post more tomorrow - about the results from Birgitte's EEG and visit with the Neurologist.

1 comment:

  1. Kristen and Kirk....it was so good to see you, be with you and hug you all yesterday......it is evident how painful and extemely difficult this step in the journey is for you both.......I wish I could take this burden from you ....my heart aches to the core that you should even be in this position......yet here you are........
    Answers I don't have, but encouragement. love and support I do.....
    You have both indicated that you'll research as much as you're able and then ultimately, a decision will have to be made....God is in this: He will guide your thoughts, He will bring the right people and information across your path, He will assist you and remain Sovereign over any decision you make.....(this He Promises us).......
    Once you make it turn it over to Him....I know, I know, we are all tempted and do "take it back, mull it over and second guess", but then turn it over to Him again (and again)..HE WILL NOT FAIL YOU....no matter how you feel (or not feel), or how difficult or confused the circumstance......JESUS NEVER FAILS.
    I know that all of this is much easier said than done (for sure), but at the end of the day (or hour etc) an old saying comes to mind: "The real victory of Faith is to trust God in the dark".
    God is the Master of Leading Us Through Darkness.......

    Wanting You to Know You Are Loved and Not Alone,
    Your Cous' Jo
    "TRUST IN THE LORD WITH ALL YOUR HEART; DO NOT DEPEND ON YOUR OWN UNDERSTANDING. SEEK HIS WILL IN ALL YOU DO, AND HE WILL SHOW YOU WHICH PATH TO TAKE"
    Proverbs 3: 5-6

    ReplyDelete