Update

You all know about KB, the other Rhabdo Patient that died
in December. What I didn't know is that R also died ( Nov ),
she also had Rhabdo. Rosie shared with me this week that the
progression of the disease at the end is very bad. During the
last months the cancer attacks the skin and the trunk is covered
with open sores not to mention the spread to the internal organs.
If all that isn't bad enough the smell as the skin breaks down
becomes very bad.

Paige has 5 more cycles till completion of this round of Chemo.
Assuming one month for each, she should be completed in July.
Now the ugly part. We have 2 choices. Either choice would begin
with waiting for relapse after July. Rosie thinks relapse will
take 3 months. I think it will be less. If Rosie is right then
that will take us to November. We have decided not to try the
experimental protocols as none proved effective for either KB
or R; and both of them were Stage 3 dianoses and had better
chances than Paige does. From KB and R's experience the
cancer continues to spread even with the experimental protocols
and the quality of life is very bad because the experimental
protocols are not tolerated very well.

Our first choice would be to allow the cancer to spread throughout
the body and radiate the tumor on the brain; Dr. M believes
that the tumor on the brain will come back quickly. This first
choice would mirror the final months for K and R in that
the cancer would continue to spread and the skin on the trunk
would break down while the cancer spreads to other internal
organs which ultimately cause death.

The second choice would be not to radiate the tumor on the brain.
Dr. Marina feels this would be the most humane decision as Paige
would be in less discomfort with this choice. Pain medication
can be taken for headaches and other symptoms. The progression
toward death would be faster and would have fewer difficulties
than the first choice offers.

As sad is this whole situation is we are always faced with less
than desirable decisions. Right now we both feel the second
choice is the best. The best estimate is 1 to 2 months from
relapse to the end. Rosie is looking at January 06, my feeling
is that it will be October or November 05.

It's never too late for a miracle either, let's not forget that.
Although she won't let me make a sign of the cross on her body
with the Lourde's water, Paige regularly drinks the water in
her bedside glass at nighttime; don't give up this little
secret.

Just because I found out about all of this recently it's entirely
possible that you know about it. If this is the case know that
typing this up is therapeutic and helps me to deal with the reality.


c
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