Saturday, February 28, 2015

Jen's latest blood draw and a spontaneous afternoon walk

Jen had her latest blood draw on Thursday and all of her numbers are still good.  Her platelets have dropped, but not alarmingly.  We will need to check next week to see if they drop further before she will be able to resume any further treatment.

The big news we are waiting for will be this Monday.  Jen gets her next MRI.

While driving home from UCLA, Jen spontaneously decided she wanted to go for a walk.  We had a very enjoyable visit to the Japanese Garden in Van Nuys.  Jen was able to walk around for over an hour and was especially excited to see the variety of birds they had at the park.

Some of you may recognize this place - it was used as Starfleet Academy in Star Trek.

The waterfall's three levels represent heaven, man, and earth.

Saturday, February 21, 2015

Another Update

Jen had her latest blood draw yesterday and all of her blood levels are good and continue to rise.  She is not yet at the nadir following her last round of chemo - that will be in about another week to week and a half, but during her last round at this point her levels were already falling.  If her blood levels hold and if the next scan reveals no growth, we will start her next cycle in 2 weeks at a higher dose, though lower than the previous cycle that she had difficulty with.

She also received her latest report for compliance with the Novo device and beat her own record which was already a high for any patient at UCLA.  There is a patient from Cedars with a higher score - a 90 year old woman!

Jen continues to fight and is giving it her all.  She works out daily, meditates, continues to work on her speech and cognitive function.  We are making a slight tweak to her diet by increasing the Ketogenic ratio a little bit.  The extra calories from fat will help her to achieve a greater level of Ketosis as well as allow for a day of fasting once every 10 days.

Meanwhile, we are getting ready for our annual Oscar party tomorrow and looking forward to seeing everyone who can make it.

Jen's next blood draw will be at the end of next week and her next MRI the following week.  Please keep us in your thoughts and prayers as we hope for positive results.

Wednesday, February 11, 2015

Chiming In

I know, I know, I’ve been bad; leaving you reading only the updates from Randy, and never once from me!  I’m here!  It is really hard work getting well, and I’ve been busy with that.

I want to echo Randy’s Thank You to all of you who have donated your money, your time, your prayers, and all of your love and and support.  I couldn’t imagine going through this without the power of this village behind me. You all give me such vigor and a positive attitude that I CANNOT possibly lose this fight.

Saturday, February 7, 2015

Jen's Decision

The blood work from Friday was good.  All of her levels are up!  We have thought long and hard about what to do next.  We have had numerous conversations with our doctors and researched on our own as well.  Jen has decided to resume the chemo, a decision that I agree with.  There were several factors which I won't bore you with that helped us reach this decision.

Jen began her 3rd cycle of the chemo last night.  The dosage is lower than the previous one so hopefully her system will tolerate it better.  Will keep you posted.

Wednesday, February 4, 2015


I just wanted to post a general thank you to everyone who has helped us over the last several months. 

Our donation site to help raise funds for Jen's medical bills has now closed and we achieved 94% of our goal.  This was in addition to the one Jen's work colleagues had created which achieved over 100% of it's goal.  Thank you!

We have also had numerous friends who have helped out with transportation, meal prep, cleaning, and just being there to visit and talk with.  Again, Thanks to all of you.  It means a lot.

Jen's latest blood draw

I just realized, I never published the previous update I had written.  My apologies.  I have begun with that posting and then move on to a more current update:

Jen had her latest blood draw on Monday (Jan 26).  Her platelet levels were up, but not enough to resume chemo yet.  Unfortunately, her white counts have now moved lower to the point where these are also preventing her from resuming the chemo.  Her next blood draw will be next Monday and hopefully everything will have improved by then.

Jen's doctor at Cedars is very concerned with the fact that she is not tolerating the chemo.  He supports moving forward with a different drug called Avastin.  This is a drug that UCLA has discussed with us as well, but they don't believe she should begin taking it at this time.  It is a powerful drug that most brain cancer patients eventually end up using, but it also has potential serious side effects, although it doesn't affect platelets and white counts the way chemo does for some patients.  Another major drawback to starting Avastin, is that once a patient begins it's use they are no longer eligible for many of the clinical trials available that they might otherwise be able to participate in.  Jen is not a candidate for any clinical trials presently as she is still non recurrent (the cancer hasn't begun to grow again since beginning radiation/chemo).  We are weighing options, but can't proceed down either path until her blood levels return.  We will know more next Monday after her blood draw.

So, Monday's blood draw showed an increase in platelets and white cell counts.  Her platelets are now high enough to resume chemo, but her white counts are just shy.  We will have another blood draw on Friday when we also see the seizure specialist at UCLA for a follow up.  Jen has been seizure free now for 2 weeks since increasing her medication.

Our biggest issue is wrestling with what to do next.  We are at a crossroads.  We have 2 of the best doctors from 2 of the world's best centers for brain cancer and we have 2 different opinions on how to proceed.  It was great when they were in agreement, but I guess ultimately this is why you seek out a second opinion.  We are just trying to do as much research as possible and hopefully arrive at the best informed decision we can.  Lots to consider.

Today, Feb 4th is also World Cancer Day.  We are at least fortunate enough to live in the US and have access to leading cancer facilities.  Not everyone has these same options.