Tue,
13 Apr 2004
Huntsman
Cancer Institute
Howdy
there. It's Tuesday night and I thought I'd give ya'
a quick update.
Last week on Thursday morning I talked with our BMT
team and asked for a sarcoma specialist and they told
me of a woman at Huntsman Cancer Institute (HCI).
I called that afternoon to get the ball rolling, knowing
they'd probably be three weeks out for an appt, but
they called me back that evening and said if I could
get all of Jade's records and documents faxed to them
by Fri afternoon they would be able to see us on Monday
the 12th. That's no small stack of info but I was
able to get it all done and we went yesterday to meet
with Dr. Albritton at HCI. She was extremely intelligent
and had a very personable demeanor.
Dr. Albritton gave us four options to pursue. None
of these specifically target DSRCT but they are being
used on Ewing's Sarcomas and having some positive
results. DSRCT and Ewing's are like "cousins"
in a cancer family tree so they would hope it would
have positive results for Jade.
The first two are clinical trials going on in Denver
and in Houston (at MD Anderson) and the other two
would be chemos available here in SLC at HCI. The
first clinical trial is a basic chemo done as a one
hour, five day infusion every twenty-one days. The
second clinical trial is actually an oral pill with
minimal side effects but you have to test positive
for a specific marker on a molecular analysis to see
if you would respond. MD Anderson has Jade's pathology
slides and we're contacting them to see if they can
do the molecular test there and if not we'll have
to wait till they're done with the slides and have
HCI conduct the test here.
The second two options are two different regimens
of chemo, one being more intense with greater side
effects and the other less so. We would be able to
decide which to try first and if it didn't help we'd
switch to the other.
Dr. Albritton recommended not doing surgery yet since
Jade isn't experiencing intense symptoms yet. This
way we will be able to watch on CT scans if there's
any tumor shrinkage and always save surgery as a later
option to debulk before it starts to invade organs.
Dr. Albritton was honest with us and said there's
obviously no silver bullet or magic wand for DSRCT
but if we can lengthen out life expectancy with good
quality of life then it's worth a shot.
If Jade can take the oral chemo we wouldn't need a
central line put in but otherwise we'll be looking
at putting a catheter back in his chest in the next
couple weeks. We are still planning on going to MD
Anderson the last of April to see what they recommend.
Jade and I felt good about the consultation on Monday.
One positive sign was when we got to the car, I didn't
immediately start bawling. That's good. At least it's
a start. We're enjoying the rest of this week not
having major medical stuff to do. We planted most
of the garden last night and will celebrate our ten
year anniversary on Thursday. Yes, for those of you
who remember from last year's email, we were crazy
enough to get married on tax day. April Fool's Day
just didn't work out so we went for Tax Day. (Yes,
we always file early in Feb to avoid spending our
anniversary with the IRS.)
With so much unknown I (we) are trying to focus on
enjoying the moment and seeing what's good about today.
When people ask me how things are going I notice myself
saying, "Today's ok/good so far." Nobody
I know has the luxury of honestly saying, "Things
are great!" Short term or long term nobody gets
away from the headaches or heartaches of life. With
so much uncertainty I'm trying to concern myself with
the process rather than the outcome. Some days are
easier with that idea than others though.
Boy Howdy - this is quite the email. Must have needed
some catharsis tonight. At least you can just hit
delete if it's a bit much and I wouldn't blame you!
Thanks for your friendship and kindness. We are so
fortunate. Jade was commenting as breakfast "what
did we ever do to deserve such amazing friends and
family members?" We are very lucky. Thank you!
We'll keep you posted on Jade and how the peas are
doing in the garden! Take care............
Much love.........................Tanya and co.
