The following is a taken from another NB parent. Some of you may not want to read it all, it does give an honest look into what all parents feel when faced with neuroblastoma. However, there is a reason for the phrase "the truth hurts"...
If you want to enjoy your weekend, then please do not read any more until Monday. Below is a post I have taken it upon myself to copy and paste without permission. However, I have felt so strongly attached to Penelope and her fight that I feel not sharing this would dishonor the struggle all of these kids are forced to contend with.
Eventually, it ends for all of us.
Sometimes it is more difficult than others, sometimes you are spared the pain and suffering, sometimes you are given a reprieve from a lifetime of horrific memories, and sometimes you are not given that peace.
This is NB. This is what we all live in fear of. This is why we want a cure. This is why funds that are given for kids should be spent on kids. This is why I don't sleep. This is why I have nightmares. This is why I meditate. This is why I'll never be the same. This is why I have to believe there is a cure for Will. This is why I love people that I have never met, have never spoken to, and will never meet. This is why my heart breaks. This is why I created this website to keep from going insane. This is why I can never give up on Will.
JournalFriday, May 18, 2007 1:49 PM CDT
Things We need to remember:
Penelope hasn't opened her eyes more all day
Penelope must be blind in her left eye as it is purple and shut
Penelope hasn't moved an inch on her own in four days
Penelope has not eaten or had anything to drink in five days
Penelope has lost the ability to use her left hand and her right hand is starting to fail too
Penelope has a lesion coming out of her skull and keeps complaining of dizziness
Penelope's legs have been hurting all the time
Penelope's left leg is believed to be fractured and she is believed to have internal bleeding in her leg
Penelope's abdomen is very distended and making her very uncomfortable
Penelope can no longer suck her thumb or hold her "Bear Bear"
Penelope can barely find the strength to utter a word and we desperately try to decipher the sounds coming out of her mouth
Penelope is on more methadone than can be believed
Penelope still nods when asked if she want to be told stories
Penelope has told everyone she wants them to be happy
Penelope told Daddy "I am not crying, so you don't cry" (I am trying but it is so hard)Penelope is told "We love you" by her mommy and daddy about 1,000 times a day
Penelope has not complained ONCE about what is happening to her
Penelope, when told that there is a place called heaven that waits for her, told me "I know. I will go when I am ready"