Thank you Blue, but one wonders............

Maybe I can take this time to raise some awareness of this awful and life altering tumor. I'll try to be short, but ya'll know how I am. Firstly, this tumor has been consistent in it's prevalence over the years --- about 97 in all of the US per year. Very low incidence. Because of that, monies are slow to come for research. But much progress has been made in the removal and after effects since Nichole had hers, in 1977. The CAT scan was relatively new then. MRI's didn't come til later. And Nik had a metal staple in her head from the surgery and was never able to take advantage.

Here are just a few of the remaining problems from this surgery that the people face:

1. Many times the tumor causes blindness since it is so near the optic nerve and cuts off blood supply. Nichole was legally blind in one eye, and had no vision in the other.

2. The pituitary (our master gland) is often removed. this leads to:
a. no growth hormone. if this happens while
young, like Niki, they need growth
hormone, given in shots.

b. no antidieuretic hormone. This means they
have diabetus insipidus - a condition
whereby their pituitary does not instruct
their bodies to stop the thirst mechanism
nor the release of urine. Think about that.
We lived in Chicago at the time, and used
say, Nichole would drink Lake Michigan,
and then pee it. She would literally kill
someone for water - if she had been big
enuf. Nowadays, there's some relief for
this, but not a cure...It's still an issue
for many.

c.No female or male hormone. This means
that a child will not develop secondary
sex characteristics. No pubic hair, no
breasts, no period, no underarm hair...
unless provided for by synthetic
hormone. Never a replacement for the
real thing.

d. No thyroxin. Meaning no thyroid
hormone. This has a myriad of meaning.
Thyroid controls much of our emotion,
much of our temperature control, much
of our metabolism. This is a BIG deal.
And believe me, no thyroid pill
replaces the real thing.

e.Many times the hypothalmus which lies
next to the pituitary is compromised
also. This is involved in many
things, but one is the issue of
weight and hunger, and temperature
control. Nichole was always freezing.
and could never be left in the heat.
She had hypothalmic obesity which no
one could understand, notwithstanding
her local doctors, who I now find,
derelict in their understanding of
this disease, but also willing to say
that they did. I find this apalling.
And did so then. They Just couldn't
find a way to say, "I just don't know".
Even tho the research was there, I
KNEW IT, I had done the reading. Why
then, didn't they?

f. And then the really biggy, cortisol.
This hormone is the one we use for
stress. Physical stress and
emotional stress. Our bodies
continually release cortisol to
combat stress. If we are ill, our
bodies release cortisol. If we are
under stress of any kind, our bodies
release cortisol. For Nichole, if
she was ill, a cold or flu, (and
their bodies immune systems are
compromised), we would have to
improvise with an injection
according to the degree of fever or
whatever.... This is most assuredly
a task that is overwhelming. to
medical staff and to MOMs. Certainly
to schools. And most assuredly to
local physicians. Nichole had this
kind of "failure" at least 4 times.

e. These issues are but a minor
explanation of this tumor. It
is considered catastophic, and
in my estimation, is most
assuredly that, and much, much
more. The people who have this
diagnosis face one of the most
difficult in all of humanity,
since they don't necessarily
die from it readily, but have
to live this kind of life for
years to come. And so do their
caretakers and loved ones. I have
often said, there are worse things
than death. Altho, at the present
time, I wonder.....


Now to add to these dilemmas,
Nichole began to have siezures.
Serious siezures. Where she would
quit breathing and turn blue. Me
beating on her chest before i would
call 911. For thousands of these,
she came back on her own. The last
of which, she did not.

I have given you only an inkling of this life with such a tumor removal. Today it is better, but not so much that it's not an issue. These people are still suffering and need our compassion. More than that, they need our help.

Searcher