Joshua Tree & an Update

Well 2 weeks ago, Jen and I went to the Joshua Tree Music Festival.  This is something that Jen has been wanting to do for the past several years and we finally made it happen.  Jen worked as a street team member and hung up flyers all around LA and earned a free 4 day pass.  Our dear friends Paul and Mary volunteered setting up the festival and earned another free pass that they gifted to me.  Paul & Mary stayed at the campground in their new 5th wheel and invited us to join them.  Thank you guys so much for sharing your camper, giving us the free pass, and making us feel so welcome.  Jen had a place where she could take her afternoon naps in the AC, and keep her batteries charged and her food for her diet cold.
The festival was so chill and the music was terrific. Jen and I had a wonderful time - truly a memorable experience.

Festival Grounds

Paul and Mary's camper

The opening ceremony in the desert.

Jen with one of the many art installations.

Jen enjoying the music.

Desert Fashion

Jen relaxing at the campsite.

There were great music shows pretty much non stop.

Paul & Mary

In cancer news: 

The Senate Committee on Appropriations approved a bill to expand department of defense research into Brain Cancer.  This is a small drop in the bucket, but it all adds up.
http://hope.abta.org/site/MessageViewer?em_id=38460.0&dlv_id=63251

60 minutes recently announced that the polio trial for glioblastoma (previously mentioned here) was recently granted Breakthrough Status from the FDA.  This will expand and fast track the phase 2 trial making it more likely that it will become available in the LA area.  Although not a cure, and not everyone fared well, some patients have done remarkably well.  Jen so far has been ineligible for this treatment, but it is definitely one that we are keeping a close watch on.
http://www.cbsnews.com/news/60-minutes-fda-breakthrough-status-duke-university-cancer-therapy/


As to Jen's progress, she has been continuing the Ketogenic diet as well as the Novocure (Electric field therapy).  She recently attended her first pilates class as she continues to look for ways to challenge herself.  Unfortunately, Jen has continued to have headaches off and on for the past month or so.  Nothing too severe, and it could be nothing, but obviously it does give us a little cause for concern.

UPDATE:

I had previously done much of this thread and was getting ready to post.  Jen wanted me to keep all the photos from Joshua Tree, even though we currently have had a little scare.  Jen experienced her first seizure in almost a year on Friday.  It was a small one, but did have some involuntary mouth twitching.  Then yesterday she had a second seizure comparable to the first one.  She did have 2 seizures last year (though months apart) and continued to remain stable.  We hope for a similar outcome this time.  Jen's next scan was scheduled for June 9th, but following the seizures we have talked to her doctor and are moving up the MRI.  We will be getting the MRI tomorrow, but won't be able to meet with the doctor to get the results until Thursday.  Needless to say we are a little concerned.  We will update everyone as soon as we can.  As always, please keep Jen in your thoughts and prayers.  Thank you.