11:46PM Monday - Making the decision to come back to Texas for a few days to be with our kids - switching places with Sonja, Liza's mum - was terribly difficult. Sonja was here by Liza's side for the whole time I was gone, save just two hours. Leaving our kids today was also hard. But returning to my bride, my love, was so good. When I got into her room, we hugged for a long time without words.
Several things happened over the last 48 hours or so. First, Sonja and Liza began to ask about the possibility of a stem cell infusion - which is an option we have been researching and exploring for years. The initial response, from the new attending doc, was positive. They do stem cell infusions and treatments here at Cedars Sinai, but typically for kids with cancer, if I understand it correctly. The attending was going to ask Dr. Schievink and others.
While that lead was being chased, some decisions had to be made for Liza's IV's. She's quite weak physically from no appetite for several weeks now (she's still be drinking protein shakes and eating fruit), and her veins keep failing on her arms. With the heparin blood thinner they are giving her to prevent clots and DVTs, her arms look quite shocking. Green and purple bruises and needle pricks that resemble a not-so-mild case of chicken pox. The team decided to put in an "extended dwell" line, which includes a catheter that is about six inches long. They did so successfully.
This can stay with Liza up to 28 days or so, and she can take it with her if she chooses. This would help with blood draws, any meds needed intravenously and with the possible stem cell infusion - plus any pain infusions needed when we return to Texas.
But the stem cell option did not turn out to be possible here at Cedars. The team and Dr. Schievink decided (and these are my words now, not a quote) the idea was a bit too experimental and untested for Liza's kind of case. This is disappointing because we have seen promise in the idea for a long time and even the slightest hope that it could be possible here was a promising avenue of hope for healing.
Today, they also discontinued the continuous low-dose ketamine drip, I believe at Liza's request. So when she hugged me upon my arrival today, there were no clear tubes connecting her to IV pumps. She is free and clear of tubes for the first time in a long time. Her headache is also less sensitive to light - less photo-phobic. Visually and physically, these are small steps of progress.
Liza's pain, however, is still strong and positional. The pain does not seem to have diminished much at all, if at all. This fact reveals itself when the medication schedule, which is still quite extensive, fails to cover the spread of hours and the pain leaps back through a void in coverage. When it does, it is fierce and fresh. This is obviously a big concern. The only thing Liza's great team is focusing on right now is pain management. And it still feels rather short-term.
Dr. Louy has again been quite present and engaged since the low-volume blood patch on Friday. Today, he engaged Liza physically. When asking about her continuing pain and the positional nature, he asked her to stand up at one point. With permission, he stood behind her and wrapped his arms around her mid-section, below her ribs. He squeezed her abdomen and asked her how she felt. "Like I have to burp," I think was her first response. He squeezed tighter. Now? At this point she felt more painful pressure in her head. Finally, he squeezed her so tightly that his arms quivered. Now? She said, "I feel like my brain is floating and my headache pain is lessened." Then he let go and asked, "What about now?" She winced in pain and said, "It just felt like my brain crashed down into my head," and the pain came rushing back.
He stepped to the side and said, "You have a CSF leak."
Everything we know and everything we have read makes us feel the same way. To us, it is one of the few options that makes sense of Liza's symptoms. Even Dr. Schievink said so when he popped in a couple of weeks ago. He said, "you might have a small leak that we just can't seem to find." We agree. Dr. Louy ordered some sort of orthopedic abdomen corset that is supposed to mimic what he did with his arms. It arrived quickly and Liza tried it several times, but it doesn't have the same effect. We might keep trying or look for other options.
So, now off the ketamine drip and without a stem cell infusion here at Cedars (we will pursue that elsewhere - along with several other options), Liza is talking more about being out of the hospital. The fear, for both of us, but especially her, is failure of the pain management protocol prescribed. We do not want to manage a critical situation without resources. Liza does not expect zero pain. She's said many times, she'd be happy with a 5 or so. She just can't live at an 8 or 9 all the time, nor live under the fear of it.
Angelica was Liza's nurse today, which was a treat. She "arranged" things so that she could be with Liza. She has been a gift to us both, so kind and helpful - the best nurse we've ever had in this 13 year journey. She was replaced by Abigail - Abby - yet again on the night shift. She too is a kind and attentive, familiar face.
Praying that tonight is a good night and gives Liza and I both the confidence in the oral-regimen plus no-ketamine situation for discharge, which will hopefully not be tomorrow but perhaps Wednesday.
Thank you for praying with us.