Jen had an unfortunate turn. Saturday night she had another seizure similar to the last one that she was hospitalized for. She again lost some movement in her right hand temporarily followed by the inability to articulate what she wanted to communicate. We took her to UCLA ER and Jen was admitted to the hospital where she still is presently.
She has recovered from the seizure, but unfortunately an MRI was done and there is progression of her cancer. We had hoped for and expected she would get more time from the Avastin since it had initially worked - but such is not the case. I had been in the midst of writing a blog entry discussing the side effects she was having from the Avastin (lots of horrible joint pain), but obviously since she won't be continuing it's use, hopefully that will at least resolve.
Jen's last Avastin infusion was last Monday and unfortunately she now has to wait 30 days from this infusion before she can undertake any additional treatment options. That's 3 1/2 weeks where we can do nothing to arrest the cancer's progression. Our next best option is probably the Car-T trial at City of Hope. We will begin exploring whether that is still available to Jen. It is possible that due to the growth, she may no longer qualify. We are also simultaneously exploring a few other possibilities which I will explain further if we go down one of those routes.
The greatest issue immediately, besides trying to stop the cancer growth is the deterioration of Jen's communication ability. We had already noticed increased difficulty in the last week and with the waiting period and possible surgery, she could be impacted significantly more. There really aren't a lot of great options and we won't know how much she will be impacted until after the surgery. Even if all goes as well as it possibly can, the best options left are experimental and may not work at all - but they might.
Currently, the hospital still has not released Jen due to an issue with her sodium levels. When she arrived they were low (which may have contributed to her seizure). They have since corrected, but they rebounded faster than they would have liked. Apparently too high a sodium level can cause brain damage. Who knew? Jen's levels are not even close to high, and every level since has been okay, but they are monitoring closely. Every 4 hours she is having her blood checked, then based on the reading she will be instructed to drink more water or less water. I am honestly having a hard time understanding what the present issue is. Sodium levels can normally fluctuate by a decent amount and even though multiple readings have been within a few points of each other and on the normal side they may still hold her another night. I think they are probably being overly cautious.
Meanwhile, Jen is having a difficult time getting any desperately needed rest. Even with a private room, the interruptions are constant. Teams of doctors, regular blood draws, social wokers, nurses, housekeeping, and infernal machines that don't stop beeping even though she is okay. I don't believe she has had more than 2 hours of uninterrupted sleep in the last 2 days. She is exhausted. We are fighting to get her released just so she can get a good night's sleep. We will have to see if they feel she can safely go home.
Please keep Jen in your thoughts and prayers at this very difficult time. I will keep you posted as to what happens next.
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