by dfw-ix9.ix.netcom.com (8.8.4/8.8.4)

Received: from sfe-nm3-05.ix.netcom.com(205.184.198.101) by dfw-ix9.ix.netcom.com via smap (V1.3)
        id rma003889; Wed Feb 11 11:11:57 1998

Date: Wed, 11 Feb 1998 10:16:32 -0700


X-Mailer: Mozilla 4.04 [en] (Win95; I)
MIME-Version: 1.0

Subject: Re: Need info on possible Raptomarcocoma?? cancer

Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

How horrible to have lost your child! It is every mother's fear and I feel for
you. From what you describe, it is hard to say what it could have been.
Blessedly, she did not have very many symptoms at all. From the title of your
posting, however, I am guessing they may have suggested rhadbomyosarcoma--a very
rare tumor of embryonic muscle cells that fail to develop properly. It is rare
in the brain since there is not much muscle tissue there, but possibly could
have started in the little smooth muscle cells of a {*filter*} vessel wall (just a
guess). It may have started somewhere else that they haven't discovered (perhaps
the primary was too tiny to see--these sarcoma-type things start spreading early
sometimes) and spread to the brain. It is all very sad. It is natural to want to
know what happened, even though it doesn't change things, but if indeed it was
that type of tumor, it is not known what causes them but it is not likely to
have been anything preventable. Probably at some early stage some cell had a
mutation in its DNA and became cancerous.  Mutations like that happen all the
time, unfortunately, even without having to invoke pollution or radiation or bad
chemicals in the cooking.net">food or any of the other things that cause mutations. They are
just like typos--literally a one-base change in the DNA code of one gene in one
cell can be enough to make the cell malignant. If it happens in a very early
"stem cell" (one that will be the parent of millions of cells in the {*filter*}) in
an embryo, it is
disastrous in just the way you describe. It can cause a miscarriage or
stillbirth, or it can start a tiny cancer that takes months to be big enough to
cause problems. Your poor child may have had the beginnings of this tumor before
she was even born. If it happens later in life, sometimes the immune system
catches it in time or it happens in a cell that wasn't destined to multiply
anyway, and the person is OK. It is a senseless tragedy and hard to accept, no
matter how it happens. Just don't blame yourself or think if you had caught it
sooner she would have been OK (rhabdomyosarcomas have a poor prognosis no matter
how early they are caught--and a series of brain tumor surgeries that would have
destroyed more and more of your poor child's mind and not saved her in the end
would have been a horrible thing for her).
   There are certainly no words of consolation for what you have been through. I
hope you get results that give you some sense of closure and that eventually you
will find some peace. I hope her passing was gentle--certainly gentler than what
her life would have been had she lived with the ravages of a brain tumor. Right
now our family is going through hell with my husband's sister, who had a brain
tumor that must have started in childhood or infancy but grew so slowly that she
had no symptoms until {*filter*}age (when she became depressed and strange) and even
then for 15 years she was mis-diagnosed as mentally ill and spent her whole
youth in & out of insane asylums or living with us (and making continual suicide
attempts, hallucination, having seizures, etc.). Even though I thought she had a
brain tumor from her symptoms (also a tiny twitch near the mouth and eventually
twitching down the arm on that side) and got them to do an early form of pet
scan when she was about 18--which disclosed a tiny dot in one temp{*filter*}
lobe--they never believed it could be a tumor. When they finally did an MRI in
her 30's, it was the size of an orange. They did surgery and radiotherapy at the
NIH, which left her with terrible personality changes (now vicious and {*filter*}
disposition and paranoid) and an impaired ability to form new memories even for
minutes at a time. She has lost her home and her job recently, and is becoming
progressively demented from late radiation damage to the brain which has also
caused a secondary pituitary tumor for which she has to take constant {*filter*}
since she can't ever have more radiotherapy. She has had to move in with my
crippled daughter who is the unwed mother of a 6-mo-old retarded baby and is on
welfare herself, so she has to hide Carol in the laundry room of the apartment
so the social workers don't catch her supporting another person on their cooking.net">food
stamps. Carol thinks she is talking on the phone to Publisher's Clearing House
who are hiding money from her. She sees peppers in her cooking.net">food that aren't there.
She thinks criminals are breaking in and stealing the TV remote-control and then
breaking in again later to hide it in a new place. She is almost 50 and has had
no normal life at all, no friends, no independence, etc. When I think how hard
we all prayed for her recovery from the brain surgery, it makes me sick.  She is
a thousand times worse off than if she had died on the table, with no hope of
improvement and increasing dementia as her future (though perhaps a normal
life-span since she is otherwise healthy and the tumor has not recurred in over
15 years). You would not have wanted this for your beautiful child. I am sure
you gave her a happy life filled with love and sweetness from beginning to end,
and she was too young to have really understood how serious her illness was and
what its implications were. You bore that worry and pain for her, and she was
able to live out her time in peace and surrounded by tenderness. Not much
comfort right now perhaps, but more than many of us will ever have. Be patient
with your own grief--it will never completely pass, but it will mellow and teach
you a special kind of compassion that those with more fortunate lives seldom
achieve. God be with you--Helen S.

> To whom it may concern,

> My 15 month old daughter just died of a malignant brain tumor.
> She had no "tell tale" symptoms until 3 weeks before she went into the
> hospital. Her only "give away" symptom was a tremor on the right side of her
> body, similar to Parkinsons disease. The pathologists still do not know what
> kind of cancer it was, and the Chief neurosurgon at Children's Hospital in
> Seattle had never seen such a malignant tumor before. If anyone has any
> information that may help, or has known anyone with similar symptoms, a
> response would be greatly appreciated.