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!
5/20/08
- Fundraiser - I've been involved in fundraisers before.
Some for churches, some for other organizations. They're
always a nice thing to do and it makes you feel good to
know you're donating to a good cause. When I've worked
behind the scenes, it was always great to see a good
turnout and a satisfying amount of funds raised for a
good cause. After last night, "fundraiser" has
such a different meaning. I knew there would be people
there that have been a huge support to us all along. And
I knew there would be some new people there who were
touched enough by Taylor's story to come out and make a
contribution through their presence. But what we
experienced was truly beyond words. With wait times for
a table reaching 2 hours at one point and several brands
of beer and food dishes selling out by the end of the
night, to say that the fundraiser was a success would be
a huge understatement. But the experience went far
beyond that. To see our daughter flitting around the
restaurant talking to such a wide variety of people as
if she didn't have a care in the world would have been
reward enough, but to see decade old differences melt
away in an instant in the light of something so much
more important, to hear stories - real, heartfelt
stories - of people touched by illness, cancer, or
Taylor's strength and will to survive was sobering and
humbling. And to see total strangers, caught in the
chaos of a restaurant under siege of those driven to
support Taylor and our family, lend their hearts,
prayers, and dollars, had us touched to tears so many
times during the evening. The very friends who have
already lent us tireless support found even more ways to
express their generosity, and people we didn't even know
opened doors that we didn't even know existed. We also
learned that this whole event was born by one little
girl's fervent wish to make a real difference and her
family's desire and ability to make something happen. As
good as I am with the written word, this time my words
fail me and I'm left with just two small words, so
inadequate yet all I have, for those that attended our
fundraiser. THANK YOU.
5/15/08
- Ups and Downs - We've had a lot of these lately. Last
weekend was a undeniable up. Taylor went to school both
Thursday and Friday, and lasted a very long day on
Saturday with her Day Of Champions at Seaport Village, a
visit to our friend Aisling, and a free Padre game (they
finally won!) I snapped the picture below of her with
Ruben Galvan. They had a long talk about American Idol.
There was a carnival and a really neat tribute to all of
the kids who have passed away, those currently in
treatment, and those in remission. She was the only
child with her type of disease out of a very long list
of kids, which made us realize how rare her cancer
really is. We had a great Mother's Day together, and her
chemo went well on Tuesday. Then came today. She was
able to go onto the TV show as planned, and thoroughly
enjoyed that even though she had a bad headache. When we
got home, however, things went downhill. Her headache
worsened, she got nauseous, and she spiked a temp. As I
write this, we are monitoring her closely to see if the
temp hits the magic 101 degrees that will send us to the
hospital. So far we've been lucky, but barely. She's
hovering in the 100.2 - 100.5 range. Please send prayers
that it will go down soon. 
5/1/08
- Medication - Throughout our time in the hospital, I
learned to monitor Taylor's medication carefully. There
were several times where meds were changed on paper but
didn't get changed in practice, and some things that
were ordered that simply weren't wise (such as a
laxative when she was having diarrhea or a sucrose drip
when her glucose levels were too high.) As time went on,
I got to the point where I examined each pill in the
blister wrap (I asked them to bring it to me intact so I
could check) and double checked it against the
information I had written down in her daily log for fear
of her receiving something that was wrong. It happened
enough times to warrant my concern. Recently,
I refilled another medication, brought the prescription
home, and began to dose out medication as I always do.
But a little heavenly voice inside my head told me to
double check the prescription. The name of the drug was
the same, as was the dosing directions, but there was no
dosage amount for the drug. At first I thought I was
being silly, but I called anyway, telling myself that I
checked every single pill in the hospital so why should
this be any different. The pharmacy confirmed that the
drug was the correct drug and the dosing directions were
correct, but when she told me the mg dosage amount, it
was double what Taylor was supposed to be receiving.
Word to the wise - if you have a loved one getting
medication, keep a log of the medications they're on and
any changes made by the doctor, and check and double
check each and every time you fill a prescription
including dosing directions, drug name, and dosage
amounts. I
shudder to think at what could have been....
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