Hello Rob

I'm sorry It has taken me a while to write back. Being a single mom
and taking care of two kids, ( One who is sick ) And working I don't
have much time.

I have to say it really sounds like you are doing everything right.
If they had gave me the choice of Radiation on not I would have. He
did get it when he came out of remisson the first time, but that was
only becuase that was part of getting him ready for a bone marrow
transplant. Boy is that a long story!

My son goes to Childrens Hosptial in Michigan. It's a teaching
hosptial and they have been very kind to us, even when I thought at
times I was being to much of a pain in the ass with them. Who
couldn't be when your baby is so sick. The mother bear comes out of
me. Giggles.


All's I can say is no matter what try to find some fun things to do.
I know you are limited like myself. But we have a lot of fun playing
board games and such. With my son being sick it has only brought us
closer. Thank goodness for that. I know it sounds crazy, but to keep
me from going crazy I joke around a lot and laugh. So don't forget
to laugh besides it makes for a better world right? Also don't for
get Make A Wish as well. My son deiced to go on a shopping spree...
Boy he had fun! He still has money left over that he uses from time
to time. ( They give you everything in gift cards from the stores
you ask to go to.)

Well I have to be going. I'm not a very good typer and I'm tying to
type as fast as I can, because I need to go to work.. So sorry if
things are missed spelling and such.... Psst Lack of sleep too if
you know what I mean!

My thoughts and prayers are with you and your family. God Bless You..

Shell


--- In survivingleukemiatogether@yahoogroups.com, our fun
<ourfunstl@y...> wrote:
> Hi,
> we spent the weekend at the hospital and finally got her fever
down, Jenny is in good spirits, the plan is for cranial radiation,
when we met with the radiologist he felt very confident that the
treatment would be well tolerated but they have to list all the
possible side effects, so we feel ok about it, and also look at it
as another level of leukemia removal/curing so that's how we are
taking it, when Jenny was diagnosed her wbc was not high but a very
normal level so I think that helps too, don't know, and yes with her
interthecal I believe it was methotrexate, I don't have her book
here at work. Please don't withhold because of the relapses, it's
good for you to have an outlet too. Dr. Shenoy at St. Louis
Children's has done some great work on gvhd and recovery time
improvements, it is truly amazing what they can do compared with a
few years ago. thank you for chatting with me, it really helps to
bring things in focus and helps me feel more normal too.
>
> you are in our prayers
> Rob
>
> subl34 <subl34@y...> wrote:
>
> Well from what I read it really sounds like she is doing a
wonderful
> job. That the chemo is working and doing what it should, and I
can't
> tell you how happy I am for you.
>
> Most of the kids that got sick the same time my son ( 1999 ) did
> with ALL are doing fine and have no signs of being sick again. It
> really does sound like she is doing really well with the treatment
> from everything said. When they do a spinal tap do they put
> Vincristin ( spelling ) Or methotrexates in her spin even though
she
> doesn't have the leukemia in her nervuse ststem?
>
> As far as it taking longer then you wanted to get the Methotrexate
> out of her system is okay. It all comes down to how well she is
> drinking or how much fluid she is getting, so it flushes out her
> system. Some times my son would have it hanging around for longer
> then I thought it should be, other times he was right on target.
The
> doctors told me it has to do with how hydrated ( spelling again )
he
> was before it started chemo during the chemo.
>
> As far as the Radtiation some hosptials believe that chemo and
> radaition are the best way to go. Some think just chemo is the way
> to go. Radiation is very hard on the body with a lot of side
afects.
> Some say it gives kids learning problems and so forth. I can give
> you more info on that if that is a road you might be taking.
>
> As far as her cold. I was one of the lucky ones. My son never
really
> seem to have a problem when he got one. Sure I freaked out, but he
> always did fine. I think it depends on how weak the body is before
> you get one that matters.
>
> I wouldn't worry about her eatting some times and other times not.
> The chemo will make all the foods she loved teast funny. Do you
have
> to watch what she eats? Such as not eatting fruits that can't be
> peeled and such?
>
> I'm not going to tell you to much about my son, because I don't
want
> you to become scared or lose hope. Hope is everything and it gets
> you through the hardest times. I'll only say that His is bad and
he
> has relapesed two times, and just had his second bone marrow
> transplant. The first one didn't work. There where not enought
donor
> cells so it didn't take. That is a very long story in it's self.
The
> second one so far is good, and as every mother hopes all will be
> well. It just takes time and that is the hardest part isn't!
>
> Well I should be going. God Bless you and your family. I'll be
> thinking of you and saying a pray..
>
> Shell
>
> --- In survivingleukemiatogether@yahoogroups.com, our fun
> <ourfunstl@y...> wrote:
> > Hi,
> > Very nice to hear from you, as far as her risks I wish I could
sya
> more however the Doctors told us that they consider her standard
> risk, it was never found in cns her blood stream at the start of
> treatment showed 5 % blasts and her bone marrow showed 95 %
leukemic
> cells, after one day the blast went to zero and at 7 days her
marrow
> went to 5 % and then to zero 14 -18 days later I think, just so
much
> to remember. she hasn't received cranial radiation yet, whe has
> been slow in clearing the high dose methotrexates and kind of
three
> to five weeks delayed on the roadmap. I don't know if that's bad
or
> good but I kind of believe it's good that her cells respond so
much
> to this giving her a mnore suppression rather than less or even
> none, which I hear could be tougher to keep things in check etc...
> but I don't know, I guess I am looking for silver linings
> everywhere, we just returned home from the hospital because of her
> first fever/cold symptoms since she started treatment, we have been
> > lucky thus far, heard stories about kids who routinely have
> fevers get sick and are in and out every couple of weeks so August
> until now seems like a good run without having this happen. how
> long ago was your son diagnosed? how's his appetite, Jenny's runs
> hot and cold sometimes she wil eat great and then go cold, nothing
> sounds good, the clinic nurse says that's typical chem kids, and
the
> hospital nurse said when ever the kids on our wing want to eat
> anything they make the caffeteria fix it any time of day. hope
this
> is the info you are looking for, it seems like all I read about on
> the net is when kids have tougher times, I would like to hear
about
> the ones that get through it and are doing great too. Hope your
son
> is doing good, I look and read anything I can on the web and it
> sounds like there is always alternatives and options, but it's
> difficult not to worry, it is so scary for us some days are harder
> than others but you do what you have to do.
> >
> >
> > Thanks and I can't wait to hear back form you,
> > Rob
> >
> > subl34 <subl34@y...> wrote:
> >
> > Hello Rob. I'm new here. My son is now 9 years old and also has
T-
> > cell ALL... Can you tell me if your daughter is low risk All or
> > what? Has she ever had white blood cells show up in her spinal
> taps
> > or is that all clear? In other words can you give me some back
> > ground information.
> >
> > Thanks Shell
> >
> > --- In survivingleukemiatogether@yahoogroups.com, our fun
> > <ourfunstl@y...> wrote:
> > > Hi,
> > > My Daughter is nine years old and last August she was
diagnosed
> > with T-cell ALL and I too wish to be in contact with survivors
for
> > same reasons, peace of mind that there is hope and a future. so
> if
> > you do not mind adding us to your list when you hear from
> > survivors. My daughter is doing good and we are done with
> hospital
> > chemo treatments and now just at clinic fro treatments.
> > > Thanks Gail
> > >
> > > Rob Stock
> > >
> > > GAIL HACHEY <ghachey456@r...> wrote:
> > > Hello, my name is Gail, My eight yr old grandaughter was
> diagnosed
> > with ALL when she was about 18 mnths old, When first discovered
> the
> > doctors told us, if we didn't discover it when we did we would
> have
> > lost her with in two wks, She was rushed directly from the
credit
> > valley hospital in mississauga, ontario, to the toronto hospital
> for
> > sick children where she had an immediate blood transfusioin, she
> > remained in the hospital for six wks where they put her on the
> most
> > aggressive chemo (the highest protocol) they could put a child
at
> > her age on, she never required a bone marrow transplant or
> > radiation, but had to return to the hospital for continuing
> > treatment of chemo and blood work including lombard puntures.
She
> > has been in remission for three yrs now, and the doctors tell us
> if
> > she remains in remission for a total of seven yrs she will be
> > considered cured. I guess what I'm looking for is confirmation
of
> an
> > adult survivor who has had A.L.L as a child, survived and grew
up
> to
> > marry
> > > and have children, and lived happily ever after. Cancer is a
> well
> > known desease in my family, it seems to run through my family
like
> > water, My mother died of breast cancer, My father then died nine
> > months later of cancer of the pancreas. My sister Mary had a
> > hystorectomy due to cancer when she was 30yrs old then a partial
> > masectomy at around 45yrs of age, (she is now 51) and still is
in
> > alot of pain being tested to see if there is any cancer in her
> bones
> > two of my other sister an myself had a D & C and caughtery cause
> we
> > had the cells that turn into cancer but what caught on time. and
> so
> > far are cancer free, I also had an uncle (my mothers brother)
who
> > had got A.L. L. and had passed away, at the age of 51. But I
> guess
> > the real reason I'm here is or confirmation, that my
grandaughter
> > will grow up to live a happy normal life, and maybe have
children
> of
> > her own if she wishes to do so. So if there are any adults out
> there
> > that have survived A.L.L as a child I would love to hear from
> > > you. And if there is any one in need of a little hope cause
they
> > just found out that their child has A.L.L. I have a beautiful
blue
> > eyed blonde eight yr old grandaughter as living proof, that
things
> > do get better.
> > > thanks for being there
> > > love hugs kisses and hope
> > > gail
> > >
> > >
> > >
> > >
> > >
> > > GAIL
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> > >
> > >
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