Anastasia and Julie,

I remember how you feel. As you look for answers to your questions you are only
left with more questions. My daughter Kate (the one mentioned earlier) was dx
at 4 months of age and she did not recieve any radiation. The location of her
tumor did not give us an opportunity to treat with radiation (her lung). As far
as I know she is the only survivor of a child with a tumor in there lung but
would love to find others. I feel for all of you looking for anwers. Know that I
will be praying and if you have any questions let me know.
Karrie
Julie Cook <just4juls@...> wrote:
Anastasia,
I know I feel the same way also, that is why I joined this group. I could not
get answers that I needed my just reading the upsates of the journals on
websites. I believed most of the kids were on the same protocol, because my Dr.
shared with me tthat this is the one they are having success with. I will post
it on her site later. The bare bones of it is: 51 weeks of chemotherpy,
vincristine every week for 13 weeks, radation for 5 weeks M-F once a day, while
chemo, which we opted againist we resumed chemo after radation was finished,
weeks17-51 a 3 day hospital stay every 3 weeks for maintence chemotherpy.
Evvaluations after wek 6, 18, 30, 42, 51. we are currently on 19th week and she
does also receice chemo thru spinal taps, and her omia.

My daughter is being treated at Omaha's Children's hospital. they have been
very good to us. Emily is only the 2nd case of Rhabdoid case they have treated.
This is one of the reasons I feel disconnected is because most of the parents I
have met whos children have cancer have already finshed their treatment
plan.Rhabdoid is very rare so we are spread all over the world os it is harder
for us to be able to connect.

On the disscusin board at rhabdoid kids dated Sept 26th, kate dx at 4mos was
treated without radation and she is now 3 years old, and anyomus dated Oct. 11
is the name of a boy who at 18mons is cancer free without radation. That is
promising information for you I am sure there are more It is just hard sometimes
to get the information, or the word out.

My daughter has a G tube also and I think that was the best thing we did for her
to help her with her treatment.

I will be praying for your family.

Your son may not be on same protocol as Emily because he is so young

My continuing support,
jUlie

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