Monday, August 11, 2014

We Will Label This A "Win"

This week of recovery was an emotional roller coaster. One thing that did not sit well with me is our conflicting diagnosis reports from UC Irvine and Boston. Irvine basically gave her a death sentence, I didn't tell you all how bad it was because I did not want to admit it to myself. We just didn't talk about it...ever. Boston came back with a less severe diagnosis of a juvenile form of the same type of cancer. They were night and day different. Well no one can ever tell me just to accept a large
Water fountains are fun, and fewer germs then parks!
discrepancy, you messed with the wrong Mommy! I was on the phone with UC Irvine right away to ask why they gave her that diagnosis. The response was that they were sure they were right but they would look at Boston's report and take a second look at her slides then get back to me. My phone rang later that day with an apology for the misdiagnosis and they believed Boston was correct. I should feel better, right? Wrong. Now I just felt angry that I had spent several weeks trying not to think about how my child was going to die a horrible death in the very near future. I was also mad that we spent a lot more money to get second and third opinions. Last I wanted to hear from UCSF before getting too excited.

I talked to our Oncologist today he said that UCSF gave Emma the less severe juvenile diagnosis. Even better he said that the tumor has not spread yet and if we begin chemo before it begins to spread then she has a 75% chance that it will stop growing or even shrink! This Thursday we will begin weekly chemo treatments of two different drugs for a period of one year. Hopefully in a year it shrinks or at least stops growing and we can move into a monitoring stage. There is still a chance she will loose sight in her other eye making her fully blind. We are hoping that her left eye holds strong and fights for it's life! We also found out today that her last MRI of her spine showed there are no evil tumors hiding from us.
Future Dr. Emma!

Specific prayer requests, please pray that Emma's left eye continues to fight, that she responds as best as she can to the chemo treatments and that healing would come over her little body and kill of that c-word forever and ever!

I have to say, there is just something about Emma. She captivates people. I have been contacted by several people we do not know well to say that Emma just spoke to them and they feel compelled to follow her story. Ever since she was born I have felt that that I joined her life, her mission and I am just along for the ride. This teeny tiny preemie child has a very specific purpose to her life. I can just feel it. I can't wait to see what she does, look out world! Along those lines I felt led to do a inspirational project with Emma since she already inspires so many others. We will be taking formal photos and creating a calender called Cancer Can Be... each month is a positive message. Cancer can be many horrible, terrible things but the face of cancer can be so many wonderful things. We hope to get companies and organizations to endorse the project so we can afford to give it away for free to little girls fighting childhood cancer in time for Christmas. If you are interested in contributing or sponsoring please contact us here or on her Facebook page There will be spaces for company logos and childhood cancer related events like charity walks and I will release more details as they arrive!

Finally a huge thank you to our church community. They have fed us spiritually and literally by filling up our freezer with after chemo meals. More then that they gave generously of their time, talents and finances at our benefit dinner. Our hearts are over flowing with gratitude. We cannot thank you all enough. God Bless you all!

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