10/11 - I hear you, but can't see you...

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Tuesday, October 11, 2005
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What a day, what a day... We’ve sent in an appeal form letter to
the insurance company asking them to pay for proton beam
radiation. No answer as of this afternoon. Either radiation way
we go, we need baseline readings to see how he does after
radiation. So, we went to the hospital campus today to have his
eyes and ears checked. We had an appointment at 1:30 at the
University for his eyes, and one at 3:00 at the children’s
hospital for his ears. After waiting at the University for an
hour to get in (we were 15 minutes early) and after they looked
at his eyes for 5 minutes, they said, “Sorry, they sent you to
the wrong doctor. We don’t see kids here. But, (we’re really
nice, aren’t we?) we’ve set up an appointment at the children’s
hospital for you. They’re expecting you now.” I said, “Uh... but
we’ve wasted more than an hour here, and we have an appointment
in 20 minute for his hearing test.” “Sorry” they said. *grrr*.

After we checked into the “correct” eye department, I ran
upstairs to the hearing place. They said there wasn’t a problem
moving the appointment from 3 to 4PM. Nice folks.

Anyway, to make a long story short, his hearing is great. Before
the tumor diagnosis they said he had high frequency hearing
loss. Apparently that was wrong, or he’s learned to overcome it,
because they said he has normal hearing in both ears now. That’s
the best news we’ve had in 2 months. But, we weren’t so lucky in
the eye department. Both optic nerves were pale. (A bad thing)
and his right eye was much worse than his left. He has no sight
in his right eye, but has a little light sensitivity. In his
left eye, he has 20/100 or 20/125 sight. (He can see something
at 20 feet that a normal person can see at 100 or 125 feet). So,
it’s the old joke, ‘he’s blind in one eye and can’t see out of
the other.’ That could be humorous for an 80-year-old man, but
not so with a 4-year-old boy. Doc said that most likely neither
eye would get better, and that his “good” eye may sustain
further problems with the radiation treatments. Son #4 does have
a slight astigmatism in his “good” eye, so the doc did give us a
prescription for glasses with heavy duty lenses (he said they
were made with the same stuff that bullet proof glass was) more
so to protect his “good” eye, but also to help slightly with
vision. So, anyway, it’s been a tough tough day for us.

Now that we’re not sure we can go to Loma Linda for proton
therapy because of insurance problems, we’re going to go ahead
and start IMRT preliminary procedures tomorrow. They’ll do
another CT scan, and do a ‘simulation’ on him. (whatever that
means) I guess in about a week and a half after that they will
start the actual IMRT radiation. So, we’ve got about a week to
argue with the insurance company, and hope for a miracle.

And so, how was your day today?

For those of you who get this as email...
Enjoy today’s Jokes!
Marty

"Yesterday is history. Tomorrow is a mystery. And today? Today
is a gift. That's why we call it the present."
~Babatunde Olatunji

[I’m starting not to like this quote. I’ll be happy when today is over and
I get a ‘present’ tomorrow.]

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