Tuesday, May 31, 2016

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.

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.

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.


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.

Thursday, May 5, 2016

Stable Scan!!!

Jen had another stable scan today!  It has now been 20 months since diagnosis.  We are especially relieved considering Jen's recent headaches. Thanks again for all the continued support.

Tuesday, May 3, 2016

Going Gray in May

May is Brain Cancer Awareness Month.  Once again I have changed the look of the site to reflect this.

It has been a busy month.  We had a Tiki party at the house for my 50th birthday party.  Thanks to everyone who was able to come out.  We survived taxes and just yesterday saw my parents off to the airport after their stay for a week.  Below are a few pictures from the visit.
Randy & Jen with Randy's parents at Huntington Gardens.
Randy with Parents in Rose Garden.
Japanese Garden at Huntington.


Sitting around the fire.

Jen in front of Air Force One at Reagan Library.

Jen if front of a piece of the Berlin Wall.

 We had a great visit with my parents.  You may notice the picture of Jen in the wheelchair at Huntington Gardens.  This is not due to any deterioration, merely something we do if we go someplace that involves a lot of walking/time on the feet.  It definitely makes it easier for her to maintain enough energy and gives her something to hang her Novocure pack on.  Even so, she usually ends up splitting the time between sitting in the wheelchair or just walking behind it.
  Jen has been doing well.  She has started doing Physical Therapy again a few times a month.  We have to be careful with how often she goes so we don't run out of what the insurance will cover if she ends up having a greater need for it later in the year.  Jen continues to have memory issues, again probably from the radiation.  She has had a few headaches in the last couple of weeks.  It's probably nothing, but obviously we question everything as we know that headaches can be a sign of tumor growth.  They could also just be headaches.  Jen has been having some allergy issues from everything blooming and believes it could be related.  In any case, Jen's next MRI has been moved up to this Thursday (not because of any concern, merely due to our doctor changing his clinic days).  As always, please keep Jen in your thoughts and prayers as we hope for another good scan.  We will keep you posted.