Update from Keith: June 9th, 2008

Taylor had chemo on Friday night. As usual, they didn't start her on chemo until 11:00. At least it wasn't because the attending could not be found. This week's attending signed off on Taylor's chemo not long after she was assigned a bed.

It was a mini-reunion on 4 West this Friday. Taylor's original roommate from her first hospital stay, Sophia (or maybe it's Sofia?), was there because she had developed a fever. Kris and Sophia's mom, Amy, text each other often and it was nice to see them again. I can remember being jealous of Sophia and Amy back in those dark days because although she has a brain tumor, her prognosis was better than Taylor's. Now I am just happy that both Taylor and Sophia seem to be getting better.

Also on the floor on Friday night was Robert, a 4 year old from Simi Valley. Robert was also frequently on the floor during Taylor's long hospital stays. I remember being so amazed that he was often in a good mood, running up and down the halls, and enjoying the play room. That seemed so far away for Taylor at the time (now, Taylor, too, has her bright moments, usually 10+ days post-chemo). Robert's treatment has already finished so seeing him there brought a momentary worry. It seems that his x-rays had revealed some spots somewhere in his body that concerned his doctors that his cancer had returned. After examining him more closely, though, they concluded his cancer has not come back. It was nice to see his parents again, though.

Finally, Maneh, another frequent 4 West patient was on the floor on Friday night getting her last chemo treatment. Maneh is probably 8 or nine years old and is a sweet, smart little girl. She has the same cancer--Ewing's sarcoma--that Kris had. Kris and Maneh's mother talk frequently when both are on the hall. Although I am glad for her that her treatment has finished, it was a little sad saying good-bye to them on Saturday morning as we may never see them again.

One Friday visitor to 4 West particularly excited Taylor; the actress who played the role of "Lavagirl" in the movie the Adventures of Sharkboy and Lavagirl, Taylor Dooley, came to visit the kids. Taylor is a fan of the movie. She was also excited when we told her that the actress's name is also Taylor. But she was also shy. A combination of not having hair and not feeling her best coupled with some natural shyness made T want to stay in bed. Finally, we convinced her to get up and go see Lavagirl. T came back with an autograph and a big smile. She was so proud of herself for meeting someone so "famous." I was proud, too.

I was able to skip night duty at the hospital this time, but I'm told that the same Ativan-induced cycle repeated itself. First, she was extremely high--unable to sit still, very happy--then she came crashing down to the point where she was crying for long periods of time for no particular reason. It's almost an emotionless cry, though. She doesn't seem particularly sad, she just cries. I hate putting her through the Ativan ups and downs, but it's the one drug that seems to curb her chemo-induced nausea. Thus, we put up with the dancing up and down the hall (yes, she literally does this with her IV pole trailing behind her) and the purposeless tears to avoid her throwing up as much (she still throws up, of course).

Taylor was able to come home on Saturday afternoon. She did not feel great, but it is always nice to have her come home. Kris gave her a little Ativan again on Saturday evening and Taylor finally went to bed after a half-hour or so of crying. We hate what the various drugs due to her emotions, but feel powerless. The beneficial effects seem to outweigh the costs (barely) so we keep administering them to her, although I think we will try and skip Ativan in the future except for the day she actually receives chemo.

Kris and I had completely different opinions of Taylor's Sunday. I thought she was surprisingly smiley and in good spirits for 2 days post-chemo. Kris thought Taylor was feeling awful and felt bad about it. I'm not sure why I don't think that, but I thought she seemed really great.

Overnight, though, was a different story. She felt awful at bed time and complained of nausea. She threw up a few times over night. Throwing up for her can be especially awful because of the sores in her mouth. When the stomach acid hits those sores, her mouth just burns. When she threw up around 2:45 last night she asked for some ice which she puts in her mouth after she finishes throwing up to soothe the acid burn. At various times we have kept little baggies of ice in the freezer so that they would be ready for her when she asks. Kris quickly got some last night and brought it to Taylor. T puts each piece in her mouth for 5-10 seconds before she spits it out again. I hope it helped.

The Neulasta $600 blackmail has been resolved in our favor. My Dad called the company this morning and talked to someone over there who admitted that they made a mistake on Friday. While it is true that each dose costs them $2800 (I used to think it was like $9800) they get reimbursed over $3000 by the insurance company. Thus, they make money on the dose, contrary to their Friday evening claims. They apologized for the mistake and for their poor timing and pledged to continue to supply T's Neulasta. Problem solved.

Interestingly, the Attending from last chemo cycle that I wrote about in my last blog entry does appear on the most recent bill. Apparently three-hundred-something dollars is the going rate for not seeing a patient and delaying chemo. My Dad explained to the insurance company why it was an inappropriate charge and they are investigating. I'm interested to see what happens. BTW, the doctor involved is apparently a world-renowned specialist for the types of cancer he generally treats and he is Sophia's doctor. I would enjoy the opportunity to speak with him regarding his inattentive attending duties and his billing practices.


Anonymous said...

You are all in my thoughts and prayers. I wish I could give Miss Taylor a hug! I wish I could do more.

Priscilla Clements
(Missy Heyert)

aunt nancy said...

Thank you so much for keeping us updated on Taylor's treatments and how she is doing, especially when she has a good day.
I check your web weekly.
Taylor is always in my prayers and I look forward to the day when all of this over for all of you.
Sending love and best wishes.
Aunt Nancy