Jen's status

Jen has now completed the second injection of Car-T cells.

Jen has continued to decline, but it is uncertain at this point whether this is due to disease progression or the immune response from the Car-T therapy, or a little of both.  The Car-T is designed to heighten the body's own immune response in order to attack the cancer cells.  This process creates quite a bit of inflammation in the brain that does indeed worsen symptoms.  Each day following the Car-T injections she is at her worst, but then does improve gradually over the next several days.  But, her overall trajectory has also been downward, though it is hard to tell if she is significantly worse than she was before starting the immune therapy a week and a half ago due to the inflammation - we won't really know until her next scan about 2 weeks from now.

Jen is at her worst on the first day following the Car-T.  She is completely wheelchair bound and has almost no use of her right side.  Each day afterwards she has also had a slight fever of about 100 as well as some headaches (all completely expected).  She bounced back quicker from the first injection than the most recent one, but the second dose was 5 times greater than the first injection (50 million Car-T cells vs 10 million).  Each day following the second dose she has shown improvement and today she was able to use a walker with me beside her using a gait belt to prevent falls.  Her right arm and hand has really declined in strength and function.  She needs assistance using the bathroom and getting dressed.  Whether or not she will show any improvement once all the inflammation has decreased is uncertain.  A lot will depend on whether the therapy is doing anything positive to fight the cancer.  Time will tell.

Jen's speech has also declined.  It often takes me a while to understand what she is asking for and many times she gives up.  As you can imagine this has been extremely frustrating for both of us.  Understandably, Jen has been pretty emotional about her loss of function.  The steroids she is on do create emotional swings, but even without those on board, I know this is all extremely difficult for her (and me as well) and her inability to express herself has been far more of a loss than any physical decline.

She has begun receiving in home speech, physical and occupational therapy which will hopefully help, but currently we are limited in our availability as we are always gone for medical appointments.  So, getting in more than 1 visit from each during the week has been challenging.

Jen does have some issues with short term memory and some cognition, but she mostly seems to know what she wants to say, but just has difficulty expressing herself.  She can still read, and she was even able to read and understand a foreign subtitled film that she watched recently.  But her ability to text, email, or speak is severely limited.  We have been experimenting with some speech board apps, but really need to customize them for her use.  Hopefully this will be a tool that will help her be able to communicate better.

One of the things her neuro-oncologist told us over 4 years ago that has stuck with me is that it is amazing how people's bar for what is an acceptable quality of life will constantly lower as declines occur.  We have both found this to be a true and sobering reality.  If Jen had been told a year ago that her level of function would be where it is today, I'm not sure she would have wished to continue fighting.  But, even with all the challenges, she still wants to fight and hang on to whatever she can.  After all, the alternative is even worse.  Jen is still able to enjoy music and movies and just being able to hang out together.  She hasn't had a lot of social interaction in the past several weeks due to our intense schedule currently, but hopefully she will be able to do more if our schedule ever lightens up.

She is due for her 3rd injection next Monday.  This will be her final injection per the trial.  She will have her next scans the following Monday, but we won't meet with the doctor to discuss until that Wednesday 10/10.  If the therapy shows signs of working, Jen has enough Car-T cells left for another injection which may occur as a single injection or be divided up into 2 or more.  The best use of this final dose will be a discussion with her doctor at that time.

Please continue to keep Jen in your thoughts and prayers.  We are both truly appreciative as well to all of our friends who have stepped up to help during this difficult time.  Thank you.

Prepping for Car-T injection

Cleaning the area for the injections.

Car-T injections directly into the brain.

Jen has two injection sites. One is directly into the area of the tumor and
the second is directly into a ventricle within the brain to help spread
the cells throughout the brain.

1 to 2 days following the injection - Jen has 15 cc of Cerebral fluid removed.