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Thanks

Hi Steve, Natasha and Maya. Just letting you know that your friends at
Edwin Lambert School are working on ways to help you raise some money
for your treatment. Will keep you informed. Best wishes, Kim X

--- In MAYA-BRAINTUMOUR-HOPE@yahoogroups.com, "Steven Skippen"
<steventashap@...> wrote:
>
> Thankyou so much for all you are doing for Maya.
> Romford Raiders are fundraising for Maya on Saturday 22nd March
> including a raffle top prize being BMI plane tickets,bucket
collection
> selling merchandise,and then presenting Maya with a shirt.
> I cannot thank them enough.
>
> Steven
>

I hope that Carol was able to publicise you plight Steven. Keep in
touch mate.

Fred Curtis

Thankyou so much for all you are doing for Maya.
Romford Raiders are fundraising for Maya on Saturday 22nd March
including a raffle top prize being BMI plane tickets,bucket collection
selling merchandise,and then presenting Maya with a shirt.
I cannot thank them enough.

Steven

----- Original Message -----

From: Steven Skippen

To: MAYA-BRAINTUMOUR-HOPE@yahoogroups.com

Sent: Friday, February 15, 2008 10:19 PM

Subject: [MAYA-BRAINTUMOUR-HOPE] LIED TO US

I WILL POST ON HERE WITHIN NEXT FEW DAYS WHAT WE HAVE BEEN TOLD BY
GREAT ORMAND STREET HOSPITAL ONLY ONE MONTH AFTER THEY MORE OR LESS
SAID MAYA WAS CURED AND I THINK YOU WILL FIND IT ALL QUITE OBSURD AND
STRANGE.
IAM NOT IN THE RIGHT FRAME OF MIND AT THE MOMENT AND FEEL I WILL SAY
THINGS THAT I WILL REGRET BUT LET ME SAY ONE THING I DONT THINK I WILL
EVER TRUST A DOCTOR AGAIN.

STEVEN

I WILL POST ON HERE WITHIN NEXT FEW DAYS WHAT WE HAVE BEEN TOLD BY
GREAT ORMAND STREET HOSPITAL ONLY ONE MONTH AFTER THEY MORE OR LESS
SAID MAYA WAS CURED AND I THINK YOU WILL FIND IT ALL QUITE OBSURD AND
STRANGE.
IAM NOT IN THE RIGHT FRAME OF MIND AT THE MOMENT AND FEEL I WILL SAY
THINGS THAT I WILL REGRET BUT LET ME SAY ONE THING I DONT THINK I WILL
EVER TRUST A DOCTOR AGAIN.

STEVEN

MAYA HAD HER RESULTS TODAY AND THEY HAVE COME BACK AS A LOW GRADE SLOW
GROWING TUMOUR WHICH IS EXCACTLY THE RESULT WE WANTED.HER TUMOUR
THEREFORE HAS GONE FROM BEING A GRADE 4 PINEOBLASTOMA TO A GRADE 1
EPENDYOMA.IF ANYONE HAS ANY INFORMATION ON THIS TYPE OF TUMOUR IT WILL
BE GREATLEY APPRECIATED.
AS THERE IS ONLY THE A MINUTE PIECE OF TUMOUR LEFT WE ARE SURE THAT WE
CAN ACHIEVE A CURE AND WILL NOT STOP UNTIL WE DO.WE ARE STILL FOCUSED
AND WILL NOT STOP BEING FOCUSED UNTIL THE DAY WE DIE.
WE HAVE A MEETING ON MONDAY TO DISCUSS THE NEXT STEP AND FINGERS
CROSSED SHE WILL BE GIVEN A BREAK FROM TREATMENT AND WE WILL ADOPT A
WAIT AND SEE POLICY.
HER SCAN IS ON 19 FEBUARY WHICH WILL SHOW US IF ANY GROWTH HAS HAPPEND.

STEVEN

Hi Steve.

Our thoughts and prayers are with all your family. We do hope that the
results are given soon and that they are positive. I can't imagine the
stress and anguish that you must all be going through at this time.
Stick in there and be stong and brave.

Fred Curtis (ETV)

STILL NO RESULTS WE WERE TOLD TODAY THAT THEY WERE SORRY AND THAT WE
HAD A WASTED JOURNEY.WE REALLY DONT NEED THIS AND I MISSED A DAYS WORK
ASWELL.
WE WERE REASURED THAT THE RESULTS SHOULDNT BE ANY DIFFERENT AND THAT
THE TUMOUR SHOULD STILL BE BENIGN AND THEY WILL PHONE US AS SOON AS
POSSIBLE TO GIVE RESULTS.
ITS A TRICKY TIME AT THE MOMENT OBVIOUSLY BETTER THAN THIS TIME LAST
YEAR BUT CONFUSING AS A BENIGN TUMOUR IS USUALLY REMOVED BY SURGERY AND
MAYA HAS HAD SURGERY WHEN WE THOUGHT IT WAS MALIGNANT AND THERE IS
STILL A LITTLE LEFT.LETS JUST HOPE IT NEVER GROWS AGAIN AND WE CAN ALL
RELAX A LITTLE BIT

THANKS FOR LISTENING

STEVEN

WE ARE SCARED AS WE ALWAYS ARE BUT HAVE MORE HOPE NOW CONSIDERING THAT
WE WERE TOLD THAT TUMOUR SHOULD NOW BE BENIGN.aLWAYS WHEN WE GO TO
THESE APPOINTMENTS WE HAVE A FEELING OF NUMBNESS AND WE NEVER KNOW
WHATS COMING CONSIDERING WHAT WE HAVE BEEN THROUGH OVER THESE LAST TWO
YEARS.

DONT KNOW HOW WE DIDNT GIVE PERMISSION BUT ITS IN THERE PAGE 12

MAYA IS ON THE FRONT COVER OF THE ROMFORD RECORDER AND IS SO SHY ABOUT
ALL THIS.SHE SAID TO ME THAT IT IS FUNNY AND SHE IS EMBARRASED.

I AM MEETING ZARA PHILLIPS AT THE BRAIN AND SPINE FOUNDATIONS RECEPTION
FOR THE LONDON MARATHON WHICH I AM RUNNING ON 13TH APRIL 2008.I WILL
SPEAK TO HER FOR FIVE MINUTES AND HOPE TO SHOW HER HOW BRAVE KIDS ARE
WHEN THEY GO THROUGH CANCER AND ALSO TO PROMOTE BRAIN TUMOUR TREATMENT.

MAYA WILL APPEAR ON RADIO FIVE LIVES SIMON MAYO SHOW BETWEEN 2-2-30PM
ON WEDNESDAY THE 16TH OF JANUARY AND HOPEFULLY THIS WILL RAISE AWARNESS
MORE THAN THE TV APPEARANCES.NOT ONE PERSON HAS SIGNED UP TO WEBSITE
EVEN THOUGH IT WAS BROADCAST TWICE TODAY.

MAYA IS DOING WELL STILL ONLY ONE MONTH AFTER SURGERY.WE WERE TOLD SHE
WOULD LOSE HER UPWARD GAZE BUT ANOTHER MIRACLE HAPPEND AND IT HAS
RETURNED.SHE REALLY SUFFERED AFTER THE AGGRESSIVE SURGERY AND WILL
NEVER BE THE SAME AGAIN BUT SHE IS DOING WELL CONSIDERING.
AS A FAMILY WE A STRUGGLING AND DONT KNOW HOW WE CAN CONTINUE.WE ARE SO
HAPPY THAT MAYA IS HOPEFULLY CURED BUT ALWAYS HAVE THE THREAT OF THE
TUMOURS RETURN OVER OUR HEADS.IF IT EVER RETURNS WE WILL HAVE NO OPTION
OTHER THAN TO GO TO AMERICA AND DO BLOOD BRAIN BARRIER CHEMO OR
ANTINEOPLASTON THERAPHY.I DONT KNOW HOW WE WILL EVEN GET FLIGHTS LET
ALONE TREATMENT.
IF ANYONE KNOWS OF A NICE PERSON WHO CAN HELP US PICK UP THE PIECES
AFTER THIS PLEASE LET ME KNOW.TIMES ARE TUFF IN THE UK AND HAVING TO
PAY THE MORTGAGE ETC WHILST ALSO HARDLY EVER BEING IN WORK IS DIFFICULT.
ANY DONATIONS WILL BE SPLIT BETWEEN MY MARATHON SPONSORSHIP WHICH I
WILL DO FOR THE BRAIN AND SPINE FOUNDATION IN APRIL AND ALSO TO HELP
SUPPORT OUR FAMILY.A DONATION BUTTON IS IN MIDDLE OF WEBSITE.

MAYA WILL APPEAR ON CHANNEL 5 NEWS AT 11-30AM AND 5-30PM.THIS WE HOPE
WILL NOT ONLY HELP OUR FAMILY GET ADVICE AND HOPEFULLY A LITTLE
FINANCIAL SUPPORT BUT WILL ALSO RAISE AWARENESS AGIN AND GET PEOPLE TO
REALISE THAT THIS CAN HAPPEN TO ANYONE AND TO HELP PEOPLE LIKE THE
BRAIN AND SPINE FOUNDATION AND FAMILIES WHO HAVE BEEN EFFECTED BY THIS
DEVASTATING ILLNESS.

MAYA APPEARED IN THE DAILY MIRROR TO RAISE AWARNESS OF HER CONDITION
AND HELP OTHERS LIKE HER WHO ARE RARE TO GET HELP AND SHOW THEM THAT
ANYTHING IS POSSIBLE AND NEVER TO GIVE UP.

Enter your vote today!  A new poll has been created for the
MAYA-BRAINTUMOUR-HOPE group:

IS THERE ENOUGH RESEARCH GOING INTO BRAIN TUMOURS

   o YES
   o NO
   o DONT KNOW


To vote, please visit the following web page:
http://groups.yahoo.com/group/MAYA-BRAINTUMOUR-HOPE/surveys?id=2319910

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups
web site listed above.

Thanks!