Thu,
29 Apr 2004
MD
Andersen
Hey there. It's Thursday
night and we were orginally supposed to be coming
home from MD Anderson (Houston, TX) tmrw on Fri but
we were done early and changed our flight to come
home yesterday (Weds).
Our appt was for Monday
at noon with our coordinator and 1 pm with our sarcoma
Dr. It was a good appt but nothing earth-shattering.
The Dr. basically gave us the same two chemo options
we were given here at Huntsman Cancer Institute (HCI)
and nothing else. The good part is it's nice to know
we are getting good medical adivce here but the down
side is we were hoping they would have some other
options for us. MD Anderson is a huge medical facility.
We left the sarcoma office and walked (rather quickly)
to the pathology dept to get Jade's slides (and never
left the building) and it took us 25 min. It's just
enormous there.
I think I was a little
bummed out and disappointed after our appt. Jade had
said earlier in the day what a remarkable poker face
I have but I think it finally wore off as the day
went on. That night we met some friends in Houston
for dinner. We were sitting at our table waiting for
them to come and Jade left for a minute. Our waiter
came by and said, "Are you ok? Can I get you
something else to drink?" (I had just ordered
water and a Sprite.) I told him I was fine. Two minutes
later another waitress came by (not our waiter for
the evening) and stopped as she was walking by me,
"You REALLY look like you could use a margarita?
Can I get you a drink?" I said I was fine and
she said, "You sure you're ok?" Obviously
being sleep deprived and at the end of a long day,
I wasn't at the top of my game!
Anyway, Jade and I
have been discussing and researching the original
four options our Dr. at HCI gave us two weeks ago.
Jade's pathology slides are at HCI and they are doing
the molecular analysis to see is he is positive for
the marker to take the oral chemo drug (Gleevac) now
on clinical trial. We think this is our best option
and hope he will test positive. We should know by
the first of next week. If not, the other clinical
trial (exatecan) drug has been pulled by the drug
manufacturer and is no longer available.
That would leave us
with two off-trial chemo drugs combinations: cytoxin/topotecan
or irinotecan/temozolamide. if Jade doesn't test positive
for the marker necessary for the Gleevac trial we
will go ahead and get a central line put in next week
and get ready to start one of these other chemos.
I'm sure they'll want to do another CT scan since
it's been a month since the last one and get an accurate
baseline before starting treatment.
Jade is feeling ok.
Not great but not horrific either. He has an amazing
attitude and thinks this may be the best he feels
for a while so why complain or focus on the discomfort/pain.
It's still hard not
knowing exactly what treatment we'll be doing. I feel
like I'm on a train at night and I can only see the
light ahead of me 100 feet at a time. There is some
hindsight which provides perspective but you can only
see so far ahead. I'm trying hard to have faith and
keep trusting God. Some moments are better than others.
This is quite difficult for an organized, control
freak like myself. But I'm trying.......
I'm attaching a picture
(hope it works!) of Jade and Garrett wearing their
matching Hawaiian shirts my cousin bought while in
Hawaii recently. Jade put his on and Garrett HAD to
wear his too. So, we took their picture before leaving
the house to do errands. Nothing says, "Please
talk to us and make a comment" more than wearing
matching Hawaiian shirts. They looked pretty cute
and Garrett LOVED it.
Garrett is thrilled
the peas are starting to come up in the garden. He
loves checking their progress. Although we are watering
with a hose for the time being since I was an idiot
and walked into the drain box and snapped off the
pipe in the dark a couple weeks ago. Bruised and cut
my leg and immediately started a gyser of water bursting
up at me. I hope since it was dark and 10 pm some
of my neighbors didn't hear me cursing my drip system
as I turned the water off at the connection. *&!#*@!#*!!!!!!!
One of our kind friends is helping me fix it this
week. Never a dull moment around here.
Well............that's
the latest from the home front for the past couple
weeks. Hopefully next week I can let you know the
results of the molecular analysis and see what chemo
regimen we'll be starting. Thanks for your prayers,
faith, encouragement and hope. It really gives us
unseen but tangible, positive momentum. We are so
thankful for your support. We have much to be grateful
for! Thank you. Have a great wknd and we'll keep you
posted....................
Much
love......................Tanya, the expert gardener
who looks like she needs a margarita, & co.
