Walking a tightrope

First, let me get the sodium level out of the way.  Jen's last level that she had to come back to the hospital to have taken was within the range they were looking for.  So that seems to have stabilized and we still have no idea why it got a little out of whack.

Jen began a new chemo this morning.  She is now on carboplatin which is a platinum based chemotherapy.  She is doing this in combination with Avastin, which was given at a lower dose to hopefully reduce the side effects.  This new chemo is done as an infusion.

We are still pursuing the CAR-T trial at City of Hope as well as trying to keep a few other options available.  The reality is we are getting down to the options with smaller success rates.  Trials of course are always a gamble as the effects aren't known yet, but as I have mentioned before, if there is a cure out there presently (or even a treatment option that buys significant time) it is in the trials taking place.  So much of being able to undergo a trial really depends on timing.  Hopefully the timing will work for Jen.  Based on her latest scan she is still eligible for the CAR-T and Neuro Stem Cell trial.  As I mentioned earlier, the Neuro Stem trial has only had a few patients enrolled so far and the results have been less than spectacular.  Even so, individual results can vary widely and they are still in a dose escalating phase and maybe Jen would have better luck with it.  Having said that, our preference has always been for the CAR-T.  Since both would involve surgery, and having surgery twice could do more damage than benefit, we are prioritizing the CAR-T while still keeping the other one as a viable option.

We don't know whether the current chemo/Avastin combo will work at all and we definitely are concerned about Jen's blood counts plummeting.  If this happens, she would also be ineligible for the trial.  Hopefully, even if it doesn't work fully it will at least slow the growth enough so that she can still be a candidate for the trial.  It could also work really well.  This is a small chance, but it is a possibility.

We are also still pursuing the off book use of an immunotherapy drug I mentioned in the last post.

Meanwhile, right now, Jen is resting.  We are preparing for a potentially rough week ahead, but hopefully the side effects will be minimal.

We really are walking a tightrope trying to keep as many options viable as possible.  At some point we may have no choice but to let some of them go, but as long as we can do this dance and preserve some other options we will continue to do so.

Emotionally this has been hard on both Jen and myself.  We understand the odds and they are not great, but Jen is still determined to fight for as long as she can.  Hopefully, we will find something that works and buys Jen some more precious time.

Thanks again to everyone who has offered and given help during this time.  Please keep sending positive thoughts and prayers our way.  We are both so appreciative of all the love Jen has inspired.  I will keep you posted with any new developments.

I would like to end this by posting a few recent pictures of Jen.  I am posting a photo taken yesterday of Jen holding some flowers that were given to her by her old company Deutsch (thank you) as well as 2 photos taken of Jen on a day trip we took about 2 weeks ago that included a visit to Jen's favorite winery.