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Dear friends,

It was Halloween last night.

This was one of our favorite holidays when Jane was alive. She loved handing out candy. And every costume got an, "oh so cute," "very scary" or "you make that look good."

She would carve ornate pumpkin designs, create novel tombstones for the yard, and don the tall black witch hat we found years ago. Some years we would hide a tape player behind the bushes and run tapes of spooky sound effects.

We entertained hundreds of kids and their parents some years.

But last year the swelling in her legs was so bad she could not get up and down the stairs to the door. Instead she sat in the window and watched the ghosts, goblins, witches, pirates and aliens running up and down the street looking for sugar-filled loot. I sat on the stairs and handed out the candy. Earlier in the day I had set up the pumpkin lights and the boneyard and the small headstones filled with their bad puns.

We both knew her health was failing--that this might well be the last time we shared this holiday. I fought back tears between customers. When I came up the stairs at one point it was clear she had been doing the same.

In 12 days, the call would come to go in for heart surgery. They would replace the two valves in the right side of her heart that the excess serotonin had eaten away. The operation would take ten hours

But the next morning she woke up strong and optimistic. Within 48 hours they would be talking about sending her upstairs to the step-down unit.

In less than a month, she would be gone--killed by a disease no one has heard of--except for those who have it, their families, and a handful of medical professionals who have made it their cause.

I dug out the artificial pumpkins we put in the front window each year this weekend. I found the Halloween signs and put them up, too. But the tombstones and the boneyard just didn't feel right this year. And I tried to greet the little trick-or-treaters with the proper spirit and phrase-work when they came to the door. But, honestly, my heart was not in it.

Instead, I fought off the tears. The trick-or-treaters would not understand them. This was their night--and I could not spoil it for them.

Instead, I thought about the patients, doctors, and others I have read about the last two weeks as we prepare to release the package of stories for newspapers and other print media on NETs. I think about their struggles and their desires for another Halloween, another Thanksgiving, another Christmas, another New Year's, another Valentine's Day, another Easter, another summer, another fall for themselves or the patients they serve.

And I think about the patients who don't know what they have yet--who have been misdiagnosed--or not diagnosed at all. And I think about how important it is that we get the word out about the symptoms of this disease so that when a doctor sees IBS he or she knows to keep checking until they find the cause of those symptoms--and knows that one of the first things to check for is NET.

One hundred forty-nine children came to the door last night. I could hear the music wafting over from my neighbor's heavily decorated yard. I heard The Monster Mash, the themes from The Addams Family and Ghostbusters, and all the other semi-spooky tunes in the lexicon. Maybe a year from now I will again be able to get in the real spirit of the thing.

But for now--I am fighting horses disguised as zebras. And those creatures are far more scary than any costume a child can wear to my door.



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Dear Harry,

I think that was a very big and positive step you made to carry out your Halloween tradition. Over at my house, we lived here for 21 years, and you could see the kids and families, on the street in front, but they never would come up the walk or the drive. I can count one hand the number of kids we had gotten in all those years. I took Sugar, ( my little dog ), and went around the village area, we live in. I bet there were 200 kids and parents in this 8 block area. It was fun, and different, something new to do. We were out about an hour, then came home. I lit a candle for Pauline, I do that very often. You take care my friend. I will see you soon.

God Bless


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I agree, I think it's great that you continued on with your celebration of Halloween...I would have but I had such a hard day at work (I try to cram 40 hours of work into one day on Mondays) so that by the time I get off, get groceries, get gas, and drive 50 miles home, put away the groceries, shovel the pen, and walk the dog, it's after 8:00 pm and I'm too exhausted to do anything else! Alas, I never even got out my pumpkins or decorations this year...maybe for Thanksgiving!

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Harry, Halloween was Mike's favorite holiday. It has been the hardest holiday of all for me, for the past two halloweens that he has missed. I admire that you were able to follow through as much as you did. We never had many little "ghosts or goblins" at our house. We are the only house at the end of a dead end, so most people don't know the house is here. However, a dear friend of our always had a huge celebration, and for days before, Mike would help him decorate for it. Hundreds of children would come on Halloween, and then afterward, the adults who helped would have a party. (in costume of course). I am attaching my favorite picture of Mike and I from one of those times. Good memories.

Mary (Queeniemary) in Arkansas


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Mary, that is an incredible picture. :) It is so strange, I believe, how a day like Halloween which most of us just took for granted and others never really bothered much with....becomes so difficult. Every piece of candy I handed out seemed painful. Bill loved to pass out the treats...and he and Bentley, our dog, would sit by the door the entire 3 hour block (the time kids in our town can go out)....I would participate by keeping him company, keeping the coffee going, and talking to the kids. I miss all that silliness.

Harry, I know this day was difficult and admire you for sticking with some of the decorations and tradition. Again...a silly day becomes a painful memory. You handled it so well.

Mary mfh

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Mary, that is a great picture! Thank you for sharing it with us.

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Dear Mary,

That is a great picture, and a wonderful memory, Thank you for sharing that with us.

God Bless


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