PBTAwareness: Fact of the Matter.............

Everyone always asks me, "Aren't there any children that live? That do okay?" Yes there are but it is really difficult. If they are lucky enough to survive and be considered NED or No Evidence of Desease, the relapse rates are very, VERY HIGH.
There are some children who just touch your heart. I have found this to be the case with several of these children. I talk via email to their parents we pray constantly for all of them and when they get bad news I feel it also. When Sadie died I was heartbroken, in fact I still am. I could care less about the FREAK Michael Jackson, but a beautiful girl with such a pure soul went to Heaven that day and to me, that is more important.
There have been a lot of new children diagnosed in the last week, I can count 6 children. I will feature each child on here for everyone to help support. One day at a time though.

One little girl that has captured my heart is little Avalanna Routh. She has the awful cancer ATRT but was doing so well. I was so happy! She was cancer free and away from all hospitals and treatments. Though sadly she just had a MRI that showed after 2 months of NED, new tumors in her brain :(
I featured her in May but here she is again:

Saturday, July 11, 2009 6:32 PM, CDT

We truly thought that the worst of Avalannas illness was behind us. We had an MRI yesterday and we are heartbroken. We woke up yesterday morning, hoping and praying for a clear MRI. We felt that if everything looked good yesterday, we would be fine forever. The MRI was bad - Avalannas cancer is back - in the brain. We are devastated. The doctors are surprised and so saddened as Avalanna looks and acts fabulous.

There are not too many options left - the doctors are not optimistic that we can treat this. We have meetings on Tuesday to discuss options but we need a miracle now.

This is hell on earth - I thought this nightmare was over - it has only begun.

Monday, July 13, 2009 8:16 PM, CDT

We had many discussions / meetings in Boston today - each one more difficult than the one previous to it. We are now waiting until Wednesday to do the further tests and by Friday, we should have some plan in place.

The tests on Wednesday are very important. At this point, confidence is very low that Avalanna can be cured. But good results from tests this week, may give us some handle on what we are dealing with.

Simply, we need a miracle. We need prayers to all the angels and saints. Another dear friend, whose daughter, Brigid, has also relapsed told me that Mother Tereasa needs two more miracles to become a Saint. Lets pray that Mother Teresa use her powers to cure Avalanna and Brigid.

I dreaded the possibility of a relapse. I thought about it but I really felt that we had beaten the odds. This is devastating. No words can describe how we feel. Nothing in life matters - without Avalanna...........nothing makes sense.