Friday, September 28, 2018

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.

Monday, September 17, 2018

Awaiting first Car-T Infusion

We are at City of Hope awaiting the first infusion of the Car-T cells.

Jen was released from acute rehab on Saturday morning.  We could have kept her there until Wednesday, but with the Car-T schedule, Sunday being a down day and the fact that they don't do rehab on the day of discharge, Jen would have stayed 4 additional nights and received only 1 additional day of therapy.  Due to this, her doctor felt that Jen should be discharged on Saturday.

We are still trying to coordinate outpatient therapy for Jen.  I asked weeks ago (and several times throughout the past several weeks) about setting up outpatient neuro PT, OT, and Speech therapy - but was told we had to wait until she was being discharged from acute rehab.  Now every place we have tried is booked for at least a month.  We are trying to bridge the time with in home therapy - we will have to see how that works out.

Jen's use of her right hand has significantly worsened again, and is now probably as bad as it has been.  Her balance is still good, but her speech and communication ability continue to be a struggle.  Jen is often frustrated and emotional over her limitations, but she is hopeful for the trial.  We just hope it works and that we can at least prevent any further declines in function.  Please continue to keep Jen in your thoughts and prayers.

Wednesday, September 12, 2018

Getting ready to start Car-T

Jen has been doing well with rehab and will most likely remain at Huntington through next Wednesday, although she may come home as early as Saturday - it's still up in the air.  Her mobility and balance have improved.  From my observations, I believe the dexterity in her right hand has improved over where it was at pre-surgery, but Jen disagrees.  Her seizure activity has also lessened significantly.

Jen's communication ability still continues to be her greatest challenge.  She is often frustrated with her difficulty in conveying her thoughts or wishes, but with patience she is usually able to get at what she wants to say.  Sometimes though she will just say nevermind or forget about it.  Her short term memory and cognition are also a frequent issue.  In spite of all of Jen's challenges, she still has a lot of fight in her and is excited and hopeful about beginning the Car-T injections.

This Saturday she will be having a bunch of scans- MRI, CT, & PET.  This is all part of the trial protocol in order to establish a baseline prior to the Car-T.   Jen will receive her first injection on Monday of next week.  She will continue to receive injections every Monday for an additional 3-4 weeks with additional labs and follow ups every Wednesday & Friday.  She will also need to continue with outpatient physical, speech & occupational therapy - so our schedule will be pretty packed for the next month.  We are both hoping that this will be a major success for Jen - we probably won't know for a little while.

If you would like to visit Jen while she is still at Huntington,  she is in room 4114 of the  LaVina Bldg at Huntington Hospital 100 W California Blvd.  Please schedule any visits through me.   As always, please continue to keep Jen in your thoughts and prayers.

Thursday, September 6, 2018

Acute Rehab

Jen was transferred to Acute Rehab yesterday afternoon.   She is at Huntington Hospital in Pasadena.  Here she will be receiving much more intense physical, occupational, & speech therapy.  Her room will be changing so I am not sure of her room # yet.  She can receive visitors in the evenings and over the weekends starting in the afternoon.   If you wish to visit, please contact me to arrange.

Saturday, September 1, 2018

On the road to recovery

What a difference a day makes.  Jen is doing much better.   Yesterday afternoon she gave me cause for concern when she really seemed to take a dip, but by the time the doctor came by 20 minutes later she had already bounced back.  The doctor thought she was doing well.  Apparently the swelling post surgery usually peaks about 3 days afterwards and the doctors expect that she may have peaks and valleys for the next several days.

Jen is also experiencing some side effects from the high doses of steroids she is on.  She has some increased irritability and erratic mood swings - which are common from the steroids, although even that seems to be much better today.   On a positive side, in spite of the steroids which raise glucose levels a lot, due to Jen's diet, her glucose levels have been remarkably good.  Four years ago after Jen's biopsy, the hospital had to constantly chase the steroids with insulin in order to keep her glucose in check.  Now, even on massive doses of steroids her levels are great.  The nurses are all amazed by it and keep inquiring about her Keto diet.

Jen is walking about with a walker and we are getting her up and about for brief walks throughout the day.  Her balance is improving as well as her speech.  Jen finally got the bandages removed from her head and everything looks to be healing well.  With the bandages off Jen was also finally able to put her glasses back on and see!  Last night on Jen's birthday we were able to watch a movie together.

Due to the holiday weekend, she probably won't get transferred to acute rehab until at least Tuesday.  Jen is feeling up to having visitors now.  We welcome anyone on either Sunday or Monday between 2-8 pm.  She is at City of Hope in Duarte.  She is in room 4133 in the west wing of the Helford Bldg.