Dear Evelyn from Sally
From: Sally Grigg (lostcst@mcn.org)
Sat Feb 23 14:08:31 2002
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
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