MOM'S JOURNAL
6/30/08
- Frustrated - Sorry for the delay in posting, but I
kept hoping that something wonderful would happen with
Taylor's headaches or treatment that would send me
scurrying to the computer. Alas, that has not happened.
The good news is that all blood tests show that the
cancer is still gone and that her system is doing a bit
of recovering. The bad news is that her headaches are
still very much a part of our lives and now nausea and
vomiting have raised their ugly heads and are now
constant concerns, especially in this very hot weather.
While Taylor is still on weekly chemotherapy, only once
a month is done in the clinic (for the time being) and
the rest is done orally. In about six weeks, we will go
back into the very aggressive spinal injections and
nasty drugs that dropped her levels down to nothing for
weeks. I'm not looking forward to that. So while I was
hoping that this little "break" would allow
her to feel better, become more active, and live her
life more fully, it hasn't really happened that way. She
does look better physically, though she continues to
slowly drop weight, but she doesn't like to be outside
for long because the sun and the heat cause her head to
pound and she is soon headed for the house. I have had
discussions with the doctors about the continuation and
cause of the headaches, and the sudden onset of the
nausea and vomiting, but they pretty much shrug their
shoulders and say they don't know why she's getting
nauseous or why her headaches continue and they're not
sure what to do about it, thus my frustration. At least
we have a new drug in the arsenal that seems to help
with the vomiting. Now if those darned headaches would
give up the ghost, we would all breathe a huge sigh of
relief. But keeping it positive, here are two pictures
of Taylor with her friends, Julia and Nina, at the
recent Scripps Dance Centre photos for the upcoming
dance fundraiser for Taylor. While Taylor hasn't been
well enough to participate in the dances themselves,
Kelly made sure that she got her costumes and I think
she looks great with her newly styled wig and very happy
to be part of the group. Enjoy your 4th of July!
6/2/08
- Terrified - That pretty much sums up how I felt
tonight. While learning your child has cancer is right
there on the scare scale, this was even more scary
because it was happening right in front of my eyes and
there was nothing I could do to make it go away. Because
of the increased pressure in her spinal fluid level
(probably due to the chemo) and some suspected
inflammation in the tissue surrounding her brain causing
bad headaches, she was given a drug called Reglan which
helps with nausea and helps reduce the inflammation. She
had been given Zofran, but because of its suspected link
to headaches, she was switched to Reglan. Well
that's the last time she'll ever be given that, I can
assure you! At about 3:30 this afternoon, Taylor started
having a severe dystonic reaction. Basically, that means
that she had seizure-like symptoms in which the muscles
in her body would tighten and twitch uncontrollably and
would last between two and six minutes. At one point,
the seizures were occurring so frequently that there
were only a few seconds between them. Her head would get
pulled way back and it was hard for her to even swallow.
Even when she wasn't rigid with tension, her face would
twitch and the muscles would pull her face into
contorted positions. It was the scariest thing I've ever
witnessed. So just when you think you've seen the worst
of something, don't get comfortable. It seems there can
always be something worse. Here's a picture taken
several days ago looking tired but at least like her
self. What a welcome sight after tonight!
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