Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


January 12 or something: The Little Girl in the Hospital

dear sparky,

i read your email to the list (was forwarded to me)--the one in which you mentioned myself, dickie and shaun - and i'm really touched--because i went through almost the same feeling today... about the urgency of life. 

i was at the children's hospital waiting to have my EKG and i saw this little girl--about ten years old and my mom started talking to her mom.  turns out she had just been diagnosed with what i have--and i looked at her, and my heart just ached. 

i kept saying to myself over and over "that was me--seven years ago, that scared, sick little girl was me" and i just wanted to tell her that more than anything in the world--she can't let this disease run her life.

i'm sure you feel that way--that the best advice you can give is to fight--even tho we aren't ever going to win the fight.  there's not a worse feeling in the world than to see a little kid who's given up fighting... and it just made me think of how precious each moment REALLY is.  it's cliched and whatnot--but so many people say it but don't understand it. 

my mom told me today that when i was diagnosed my doctor perceived my case as so bad that she thought my entire colon would have to be removed by the time i was 18 if i ever wanted the chance to live past thirty.  i turn 18 in a month... and my doctor has given me another 10-15 years before i even have to contemplate surgery.  and the funny thing is that no one ever told me this--that i was actually THAT sick... and i kept wondering that maybe if they told me i wouldn't be so healthy now--that i would have given up and thought the fight was hopeless.

except no one told me that i was sick--and i've learned that no matter how hard the fight is... it's never hopeless.

wow--that was long, sorry... i just felt like talking (gee, i've never heard someone *cough*sparky*cough* say THAT before).

love you lots,

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