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Do you plan ahead? Especially those of you waiting for a transplant and/or

coping with periods of intense fatigue or pain .. do you still buy advance

tickets? Plan vacations? Do you still think about

college/marriage/retirement?

Just looking at the summer camp form and wondering about putting down a

nonrefundable deposit for 6 months in the future -- then wondering about the

real future.

Pam (mom to Quantell, 10, dx 96, listed 99, beeper since May)

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Pam, it sounds pretty sad when reading your note, but

there was a point in my life when I had a very

difficult time moving ahead with daily activities let

alone anything that related to the future.

While in a seminar the facilitator asked us to write

goals and where we wanted to be 5 year and 10 years

from now.........and all I could write was " alive " .

He questioned me about it and I explained I had some

serious illnesses and a rather poor family history of

illnesses that make me wonder why I plan for the

future when I don't know if the future will come, or

whether I will be alive in the future. (the future

will come whether I am here or not)

But, this facilitator said to me, if you don't plan

for the future, you are esentially giving up on life!

Nobody knows for certain their future. The MACK truck

theory applies to all of us.

Sometimes, planning for the future, gives hope to the

person who is ill, and in a way keeps them pushing

forward.

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That's hard. When Phil was first diagnosed we didn't buy any tickets that

were non-refundable. But now since he's only sick about once a year we take

the risk 2 years ago we wouldn't have risked him going to New Orleans, this

year we did and thank goodness he made it home before having to go to the

hospital, God was smiling down on us for that one. If he was on beeper

status I don't think we'd risk it. The cost would be a big consideration.

I is feasible that if Q were to get a tx soon he would be able to go to

camp. I would think that in these special circumstances they might make an

exception to the deposit rule could you call them and ask?

Peg

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