Friday, August 6, 2010

CHOP Update

Today, we drove down to Philadelphia to visit The Children's Hospital of Philadelphia (CHOP) to speak with another neuro-oncologist. We're hoping to get a fresh set of eyes to look at Isabella's case and hopefully offer up something that can help treat her. So far, most of the requests for second opinions haven't yielded anything useful so we were very eager to get to Philly when they agreed to at least talk with us. Our conversation with Dr. Philips basically had two major topics.

First off, he reiterated that Isabella's tumor is extremely rare and unique. Because of that, it is very difficult to decide on a treatment because there is just not enough historical data to say whether we should do this or do that. Dr. Philips is one of the leading authorities in the country and he has only seen 5 cases similar to Isabella. Five in 30+ years!

Secondly, we still don't know what is showing up on Isabella's scan. He remarked that he has rarely seen a recurrence in the area of the brain where Isabella's is so this lends some credence to the theory that this may just be radiation related scarring. (I should also mention that we heard from the Cincinnati doctor and he also believes that there is no recurrence.) So what he suggested was that we have another scan called a PET scan that will show a different view of the area and possibly provide better clues as to what is in there. He also suggested that we try a different type of MRI scan as well that could provide additional information.

So here is where we are. We're going to head back home and schedule a PET scan for as soon as possible which can reveal some clues as to what is in Isabella's head. If necessary, we will schedule a special MRI which may provide further data. We have another appointment to have a regular MRI in a couple weeks to see if there is any progression of what is there. We have no treatment plans as of yet because we still don't know if there's anything there to treat.

We're still clinging to the hope that this is not a recurrence, but we are still exploring options so that we are prepared just in case. More to come!


  1. My heart and soul tells me that this is scar tissue. Think and be positive and continue to remember the power of prayer. There are so many praying for Isabella--thank you for keeping us updated.

  2. I am so sorry to hear about this sadness/scaryness...I wish (once again) I had magic words or actions but all I can say is that if there is ANYTHING I can do to help I will...!!

    I am so lucky to be able to follow along with such strong and loving parents who will take their family to the ends of the earth to help their daughter! I know it is cheesy to say but totally true: You both make me be a better person!!

    Please if I can do anything or if you or the kids need anything...I will do all I can!! ~E

  3. It's sounding a bit more hopeful that it may indeed be the scar tissue!!!! We'll keep the positive thoughts coming your way.

    Suzy B.

  4. Prayers and love for Isabella. God is mighty and powerful--believe. Please continue to update us.


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