Well unfortunatly we received some bad news today. I called to speak with Jenna's neurosurgeon's office about getting a copy of all of her reports and to my suprise Dr.Raffel's nurse informed me that Dr.Raffel will be leaving Mayo clinic on Oct. 19 of this year. She said that he had accepted a position at Columbus Children's Hospital in Columbus Ohio. She also told me that a new Dr. will be replacing Dr. Raffel in November. So now we have to decide what is best for Jenna. Thankfully we have our next MRI scheduled for Oct. 9th, so we will get to speak with him about his decision. Obviously, we trust Dr. Raffel as it is not every day that someone does brain surgery on your child, so the thought of someone else taking over her care is almost unthinkable to us. We at this point are thinking that we will transfer her care to Columbus, and continue to receive Dr. Raffel's top notch care. It is such a hard decision only because of the distance.  If you know me at all, you know that I have trouble trusting anyone with the care of my children, so this is so very hard for me.
If anyone has any advice we would love to hear it. I will post again soon, with any updates!

Well this post is long overdue! I must say that we have had a very good summer, and everyone is doing well! Jenna's wish trip was fabulous, the Make-A-Wish Foundation really is amazing and thinks of everything. We truly had a relaxing vacation where we didn't have to worry about anything. I will be posting some pictures of the trip soon.

Cookbook sales and Jen's bracelet sales are going well. The Make-A-Wish Foundation has an annual picnic for the wish kids and they asked if Jenna would want to come and sell her bracelets. We had a great time and Jen sold quite a few bracelets. They asked if I would help the wish kids put together a scrapbook page of their wish, and of course I jumped at the chance. I had so much fun getting to see the joy on the kids faces in all of the photos.

Make-A-Wish celebrated their 20th anniversary this year and had a huge celebration at the State Fair. and they asked if I would make some scrapbooks of some of the kids wishes. It was so much fun. I somehow completed three scrapbooks, with a total of about 250 wishes in them, in about three weeks. 

The highlight of our summer had to be that Jenna received an award at the MAW State Fair celebration. They inducted her in to their Circle of inspiration. They award this to MAW children that continue to inspire others even through their own illness. They had an amazing Award ceremony and she put her handprints on the circle of inspiration board. I will be posting pics of the ceremony also.

Most importantly she feels good, so good its almost scary. I can't tell you the last time I remember seeing her look so healthy. She always looked so frail and pale. She has just changed so much in so many ways since her surgery.

They have scheduled her next MRI for Tuesday October 9th at 8:30 am. We are definately ready to see what is going on in there! This will be the first MRI since surgery that we will actually be able to compare to see if this tumor is going to be aggressive or not. We are certainly hoping that you will pray for no growth!

We leave on the 14th of October for our annual Disney trip. The kids are so excited because Jen and Blaine both get to celebrate their birthdays down there. My brother and his family will be joining us there, as well as my mom. We also have some friends from home and from Louisianna that will be joining us. We truly are blessed with great family and friends.

I think I posted previously about some things we were working on to try to get some research done for JPA's.  I contacted Senator Harkin's office in Washington and found someone that was willing to help me. Senator Harkin is the Chairman of the Senate appropriations committee and he was one person that we needed to help us get some language submitted to the Appropriations commiittee to try  to get the National Institutes of Health to recognize JPA's and other pediatric low grade Gliomas as a disease worthy of research and the funding for research. I am happy to say that Senator harkin included our language in the bill and so far the bill has passed in the House and we are currently waiting to see if it passes in the Senate. If this passes the NIH will set up an actual plan for research with a timeline and goals. This was very exciting for me as I feel this is a huge step in helping so many children.