10/17 - Sickness and cures

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Monday, October 17, 2005
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1/33 = 3%

“Mom... I’m sick.”
Whoa, when you’ve been through the stuff that we’ve been through
for the last 2 months, 5 days, and 6 hours, you really take
notice when your little one says he doesn’t feel well. A
thousand things go through your head and you prepare yourself
for the worst possible outcome, and hope for the best. “What’s
up?” My sweet wife asked son #4 when he said he didn’t feel
well. He replied, “I don’t feel good, and I need the water thing
on.” (I had a nasty case of the somethings last weekend, and had
the humidifier on, in hopes of making my life more tolerable.)
My sweet wife asked son #4, “What doesn’t feel good honey? Why
do you want the humidifier on?” He thought for a second and
said, “Because I have the hiccups.”

And you wonder where moms get their training to see through
kids’ fibs...

On Friday the insurance company denied our appeal to have them
pay for proton beam radiation at Loma Linda Medical center. So,
we didn’t have any choice but to start the 3d IMRT radiation
today. (Not only because I didn’t want to spend my $49,000
savings, [HA!] but because time was getting to be a huge factor.
8 weeks is about the max they want you to wait before radiation,
and we were about 10 weeks out already. It would have been
another 2 or 3 weeks for proton radiation. So, we’re going with
photon radiation, and will take our lumps as they fall.

Here’s how a typical day will go; My sweet wife will take son #4
up to the hospital to check in, get weighed, (He was 19.4 Kg
today. He was only 17 Kg the day of diagnosis [42.3 lbs vs 37.5
lbs]) then he’ll go to the radiation therapy waiting room.
(Today we met 2 other families. One 2 1/2 year old girl and one
with a 2 1/2 year old boy, both with total resected brain
tumors. The boy’s family was on their 5th week, but it was the
girl’s first day too. We compared notes with everyone. The boys
dad had to quit his job 2 months ago to take care of his kid.
That would suck. Then they’ll call son #4 in, he’ll sit on the
table, get his “sleeping medicine” (he says he hates it) and
falls asleep. While the anesthesiologist watches, the techs move
him so his head is in the proper position. Then they take a hard
plastic mesh mask that they made last week, and strap his head
down to the exact position each day. They have a huge machine
that moves around and zaps radiation into the tumor bed. After
about 15 minutes of that, the anesthesiologist carries him up to
the recovery room with mom and dad in tow. That’s where he’ll
sleep anywhere from 10 minutes (today) to an hour or longer.
When the nurses think he’s ok, he heads home to be a really
cranky kid. Then we start the whole thing over the next day.
Every day, 5 days a week, for 6 1/2 weeks. One day down, 32 more
to go. I counted 3 nurses today who said he was so cute, and 2
commented on his eyelashes. You’d think they were 3/4 of an inch
long... Wait, they are...

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

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Reader Comment Section:

Hello Marty and family:
Well, after reading your Tuesday issue about your tough day with
the eye appointment and the insurance appeal, all that can
really be said is that you and yours are, as always, in my
prayers. God has watched over Sun #4 so far and will continue to
do so. These kinds of decisions are tough particularly when you
have several options and you want to pick the best one for your
little son. Please know that you and yours are deeply cared
about by all of your readers and we're always here for you.
May God bless and keep you all, and may He keep his hand upon
your sweet son.
~Shannon in Nevada

Sorry.. just reading your posts from around when son #4 was
diagnosed and had surgery. That smile make me smile. What a
wonderful picture.
~Doug S.

>"I wish I could be more like son #4."
I wish I could too. God bless and keep your family through the
trials you are going through.
~Your brother in Christ, Eddie

I love everything about your family and my husband has just gone
through 34 treatments of Radiation. His tumor was on the left
side like a swollen tonsil and wrapped around his juglar, so
could not operate... ...I love to read all your mail too. I wish
the best for all of you and taking time for all your family.
~God Bless, Anne G.