We are not cured

[Guest guest]

Dear Pat,

That fundraiser was wonderful and I think everyone who participates deserves a

round of applause. Even if you can't run or bide a bike, your participation in

groups is also needed. Sue is right, you don't have to be a movie star. Some

people are great at holding your hand and telling you that things get better.

You don't have to be a psychologist to do that. When my brother went to

Vietnam, he left his large French Poodle with my mother. When she was sick, he

didn't eat, he just lay on the rug next to her bed. Something as simple as that

is reward enough for some people. When I visited the sick, they were so happy

to see any face, as it was the only one they saw all week. Whatever you do this

is felt by even one person, then you are a blessing to that person.

My thoughts about your question are where does this person come off saying that

we are " cured " ? Our disease is something that is managed during the chronic

phase. I would hope that this oranization would still contribute to research

for a real cure. It's not over till the fat lady sings. You should get a lot

of feedback on this question. I don't think anyone thinks of themselves as

" cured " , certainly not anyone who has been on all of the trials, or the a person

undergoing a BMT, like Jackie in Houston or Cheryl up in Canada.

$100 million is not exactly chunk change, so I hope LLS is able to use

everything that is not is not needed for their operating costs and not going to

big CEO salaries. Is that more or less than they raised before, I wonder. LLS

used to reimburse us up to $750 a year for our medicine and travel expenses, now

they just give you $150 if the doctor is willing to sign on the dotted line to

say that you are a patient in treatment for leukemia. As patients, we are

having to do more with less. In our case, less is not more.

Happy Monday,

Lottie Duthu