Re: Dear Evelyn from Sally
From: Evelyn (watsayyou@xtra.co.nz)
Sun Feb 24 01:18:16 2002
At Sat, 23 Feb 2002, Sally Grigg wrote:
>
>Dear Evelyn, I haven't written to you a lot, because I don't know what to
>say. It's especially hard because it brings back so many memories of my
>stepson and his cancer and childhood filled with things no child should have
>to endure. We on this board can give you all the support we're capable of,
>but it would be great if there would be a site where there were other
>families with children going through what Zach is having to manage.
>
>I don't know a lot about computers, but maybe there is a site we don't know
>about. There is a place somewhere in the south that finds doctors for
>people. PBS did a special on them two(or more) years ago. They may also be
>able to find sites and computer pages devoted to your son's problems. At
>least they might be able to know where to look. Could you email PBS, tell
>them your son's story and ask them to look back in their archives for a
>story, a special on two men who were dying from Aids. These men searched and
>searched for doctors with no success. So eventually they started a web page
>to find doctors for people who could not find doctors themselves for their
>ailments.
>
>I know it is a long shot, but there can't be that many stories on PBS like
>that. If you could convince someone to help you, and put you in touch with
>them, they might be able to find better medical care for Zach plus a better
>site for him.
>
>Please don't misunderstand me. We love having you as part of our group, and
>we don't want you to stop coming here EVER. I just don't think we're doing
>him justice, because we know so little and have not had that much experience
>except, like in my case with my friend's daughter and my son. His problem as
>you know was completely different. He did survive his cancer though, and the
>odds were not in his favor. They removed a malignant brain tumor shaped like
>a large grapefruit with a lemon on the end. When I got him he was still in
>the middle of his battle. He couldn't walk a straight line; he walked, but
>his balance was so bad, he fell over. He also drooled and was bald from the
>cobalt radiation to his head and chemotherapy. The doctor wouldn't give odds
>to his survival, but they were warning us that he probably only had a few
>months, so not to "get our hopes up". Hogwash.
>
>He managed to say two words, "me want". He's always had strong assertive
>skills, from his father, I'm sure. We had a long ways to go, but today he
>lives on his. Growing up in an Inn was good for him, he learned
>socialization skills and picked up how to deal with people even if he did
>look funny. He recently won the gold medal in the Special Olympics Golf
>Tournament. We were so proud.
>
>I know this isn't very helpful for you, except perhaps to give you hope. The
>doctors practically told us he would die, but he didn't. He fought hard.
>Zack needs to fight his battles too. They are different but just as real.
>It's hard on you, I know. And I don't know if I've helped you. But somewhere
>on the computer there must be a site for children like Zach. We can give you
>love and practical advice. But I know there are probably thousands of
>children in this country alone who are suffering in silence. They don't
>anyone to know. My friend's child and my knowledge of her condition only
>happened because she had been crying and she couldn't keep it in anymore.
>The first thing she asked was complete secrecy. The little girl didn't want
>her friends to know and the mother didn't want her friends to know either.An
>awful situation. They moved away when the child was 13. She had not outgrown
>it, and everyone was still hiding it, which didn't help really, although I
>can understand it's not something a child or especially a teenager wants as
>common knowledge. Kids can be so cruel. The kids here locally were so mean
>to my son, so Sunny built him a pool and a hot tub and the local kids
>couldn't come use it unless they were nice and were invited. Worked very
>well. We had the first hot tub/pool in this area. Anyway, I've rambled on
>way too long. Please forgive my wordiness. I know I haven't helped, but I'm
>praying for you and Zach, Love, Sally
--
Hi Sally, Thank you for sharing your support and story.
I agree with you, there must be someone out there who is
going through the same situation as myself. I am going to
continue researching and asking questions. You spoke of
PBS can you tell me what these initials stand for?.
The stage I am at now is wether to put Zac through numerous
tests to to possibly get negitive test results as before
last adhesion repair. I dont want him to have exporitory
surgery as more adhesions can form.
I have been considering other alternative laxatives which
will not damage his bowel as much.
I also want to start up a local constipation support group
so we can get together for support and friendship.
Take care, Lots of love Evelyn.