Wednesday, May 2, 2018

A rough week.

Last Friday Jen had a breakthrough seizure.   She bent down to pick something up and all of a sudden couldn't move her right hand at all.  The use of her hand came back slowly after about 10 minutes, but then she lost the ability to speak.  Normally with Jen's typical mild seizures, she is aware of them coming on and definitely feels that she is having one. This time however, Jen didn't have any warning or even awareness of the presence of a seizure, so we were also concerned about the possibility of a stroke.  We took her to the ER and she was hospitalized overnight.  Her speaking ability returned about 2 hours after the seizure's onset.   A stroke was ruled out,  so the episode was determined to in fact be a seizure.  Her medication was increased which has had a noticeable effect on her fatigue level as well as her anxiety level.  We are looking to lower the dosage slightly over the next several days, but it will still have to remain higher than it was previously.  Hopefully, she will acclimate over time - I have already seen a slight improvement in the med's side effects over the past few days.

Of course we were also concerned that this new seizure (the most serious one Jen has had since her diagnosis) was caused by tumor growth.  This is unfortunately the case.  This marks Jen's second recurrence.  We are exploring various options for our next step, but are still gathering information.  We will have to move quickly since the cancer won't wait.  I will let you know what we are pursuing next once we know.

As I write this,  Jen is at City of Hope undergoing the Leukapheresis.  Fortunately,  this new recurrence does not exclude her from the CAR-T trial, although we are still looking at 30-40 days before her T- cells will be engineered and grown.  So we will have to pursue another treatment option in the meantime.

My knee surgery went well and I am able to drive again.  The timing worked out well as we will be on the road a lot for our numerous medical appointments as we explore and begin Jen's next treatment options.

Please continue to keep us in your thoughts and prayers at this difficult time.   We appreciate all the well wishes as well as all the hands on support we have received from so many of you.  We can't begin to express how truly thankful and grateful we both are.

1 comment:

  1. Kristina BaumlerMay 2, 2018 at 9:54 PM

    Ugh, that sucks. We love you guys and are thinking of you so much, hoping for the CAR-T to help get her into better shape. Glad to hear your are mobile again... Keeping you on our minds constantly.

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