Wednesday, March 30, 2016

Another stable scan!!!

Jen had another stable scan today!   This makes it 19 months since diagnosis and 18 months of stability.  So happy right now!

Sunday, March 20, 2016

It's been a busy couple of weeks

This post will contain a lot of completely unrelated events.  Jen and I have been extremely busy for the last several weeks and I am just now getting a chance to post about some of our activities.

First up, Jen and I hosted our annual Oscar Party a few weeks ago - something we have been doing for at least 20 years now.

Lisa won the Trivia prize

Earl won the Boobie prize. Yes it is a pillowcase - Nick is watching you while you sleep.

Ervin won 3rd place

Kathy won 2nd

Tom won 1st

Every Mad Max movie ever.
Srini & Jen do their best Blue Steel imitation.

Thanks to everyone who came. 

The following weekend, Paul & Mary came to stay with us and the four of us along with Rich & Terry took in a concert.  The Mavericks.  If you don't know them you should definitely check them out.

With Paul, Mary, Rich, & Terry

And now a few videos of Jen dancing.  She danced most of the night!

Last weekend we attended our second UCLA Brain Tumor conference.  It was again informative and also a great chance to connect and share stories with others going through a similar situation.  The most promising areas of research are in the areas of immunotherapy and vaccine trials, although nothing yet has had the response rates that we have seen in recent years in other types of cancer.  As I have mentioned before, brain cancer is one of the hardest to treat because of where it resides and the presence of the Blood Brain Barrier that normally protects us from toxins but also prevents drugs from reaching the tumors as well.

This year was the first time they had an entire presentation dedicated to the Ketogenic diet.  Something Jen has been doing for over 17 months now.  Jen was pointed out by the presenters and Jen and I helped to answer questions and Jen even brought out her lunch and snacks to show examples of Keto meals.  The room was packed.  There is definitely a lot of interest in this, just not a lot of human research as of yet.  Trials have been hard as the compliance rate is not very high and there is no major pharmaceutical company funding any research.

Then, a few days later, Jen and I took in another concert.  This time we saw Jake Bugg.  He just turned 22 less than a month ago and already has 3 albums under his belt.  Music is such a source of joy for Jen and myself.

Jen under the marquee

Jen is also presently an active street team member for the Joshua Tree Music Festival
Jen handing out flyers for the event

And lastly, one of our friends Lisa, who works at Warner Brothers invited us to a sneak preview of Universal Studios Harry Potter Wizarding World.  This is the newest addition to the theme park.  It doesn't open to the general public until April, but we got a sneak peak.  In addition, we got to spend the entire day at Universal and take in all the rides as Lisa's guests.  We planned carefully and Jen did use a wheelchair to conserve her energy and give her something to hang her Novocure backpack on.  Jen was definitely tired at the end of the day, but she really had a great time.  Thank you, Lisa!

The new Wizarding World section of the park.

Jen tries her best to keep the sun from heating up her arrays.
They are very sensitive to the heat.

Lisa, Jen, & Kathy


The Backlot tour

Bates motel and the Psycho House on the hill.

Look, there are vacancies.
Dr. Seus

Flash Flood.
Crashed plane from War of the Worlds.
We had to cover up Jen, so her Novo arrays didn't get wet on the Jurassic Park water ride.
Jen & Lisa

Wow, it sure has been a busy few weeks.  Living life and trying to make the most of each day.  Fortunately, we don't have a lot planned for a few weeks (besides doing #%$@ taxes).

Jen's next scan is in a week and a half on March 30th.  We continue to welcome all of your support, prayers, and well wishes as we again hope for a positive scan.

One final thing.  For those of you who do a lot of online shopping, I am not sure if you are aware of Amazon Smile.  This is the same storefront as Amazon, same prices, except a portion of most purchases can go towards a charity of your choice.  We have selected Musella Foundation, which has been a valuable resource and they do a lot of research funding for brain cancer.  There are several other leading brain cancer organizations to choose from as well.  You can of course also pick from hundreds of additional charity organizations that may be nearer to your heart.  I would encourage anyone shopping there anyway to utilize this resource.  Every little bit helps.  You can google Amazon smile or go to: