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Emily's Plight
Emily was getting high temperatures like any other child,
when these continued and she was complaining of aching legs
we took her to our GP who told us that it was probably growing
pains and not to worry. A couple of weeks went by, her condition
did not change, so much so that we ended up in Accident and
Emergency late one night. It was at this stage that we demanded
blood tests should be taken.
To our horror, after being discharged we received a phone
call in the early hours on the following morning requesting
we return, as abnormal cells were found in her blood. To our
astonishment we were taken to one side and given the news
that every parent dreads............your child has leukaemia.
We were then blue lighted to The Royal Marsden Sutton where
our new life was to begin........
No words could prepare us for the road we had ahead. Our
whole life was turned upside down, never knowing what the
next day would bring.
Emily was diagnosed with ALL (Acute Lymphoblastik Leukaemia).
This is a cancer which affects the white blood cells. The
first 6 months of this treatment is fairly intensive followed
by 2 years in outpatients department.
Emily's treatment was going well and life appeared to fall
back into place, although it would be up and down to the hospital
continuously. Emily had returned to school and was enjoying
being back with her friends. Unfortunately, Emily suffered
a setback; she had an infection in her portacath which resulted
in her getting septicaemia and being admitted to St Georges
Hospital Intensive Care Unit. Her little body had gone into
complete shutdown for a week. Our lives were once again put
on hold...
Thanks to the speed in which we acted Emily was able to receive
the treatment needed from the team at St Georges to bring
her through, and begin the next stage of her treatment.
After many admittances into hospital with minor infections
we eventually finished our 2 years. Emily was well, returned
back to school and we began planning for the future.
Seven months later we were to hear the news again; Emily
had relapsed and was in need of a bone marrow transplant.
After testing her only sibling Oliver no match was found.
Our plight began with The Anthony Nolan Trust to search for
a match. This is why we held our first clinic as it was proving
difficult to find a match world wide for Emily.
Family and friends helped to focus us on the clinic, not
only trying to help Emily but many others like her. Over 100
new donors were recruited for our first clinic, with over
100 more since. In November 2002 a mismatch was found and
a date of New Years' Eve was given to be admitted. Christmas
was a very special one!
Without such people as our donors, our story may be very
different. It takes a lot of commitment and courage to become
a donor and we would like to send our thanks to everyone on
the donor registration, whether you have been someone special
to save someone's life or are still waiting for that special
call.
Emily went into transplant in January 2003, the doors were
shut and isolation began. The days were long and nights were
lonely - the nurses, doctors and play specialists played a
very special part in her recovery. After only a short period
of time we were allowed onto the ward to mix with others.....
We finally returned home, but had to stay in isolation from
many visitors as infection, even the slightest clod could
return us back to hospital. It seemed a lifetime before Emily
returned to school and began to live her life again.
Many people around us suffered with us because of the devastation
such an illness causes. Oliver, Emily's brother who is now
12 couldn't understand why this was happening to his lovable
sister and family. It was so difficult for us all as a family
unit, as many nights were spent apart while we were undergoing
treatment.
Emily is now 11 and on 9th January 2006 was 3 years post
transplant; although still constantly under the supervision
of the hospital is doing very well and is looking forward
to moving to Senior School!
To us Emily is one of the bravest little girls, she never
complained when being pushed and pulled around, and injections
and foul medicines were being poured down her. Many peoples'
lives were touched by her fight to survive that they became
involved with The Emily Ash Trust and supported us and helped
us focus on others too.
We have been very lucky that we have had a huge amount of
help and support from family and friends...no one should have
to go through this alone.
Leukaemia
What is leukaemia?
Leukaemia is often referred to as blood cancer. It occurs
when massive numbers of rogue white blood cells take over
the bone marrow - which is the principal site of blood cell
production - and spill out into the bloodstream. If left untreated,
leukaemia is almost always fatal.
Each year in the UK 24,500 people are diagnosed with leukaemia
or one of the other blood cancers. Leukaemia and lymphoma
together account for half of all childhood cancers.
Treatments vary from child to child, unfortunately tend to
be unpleasant and put a child's body under enormous strain.
Treatments that depress the immune system leave the body unguarded
against illness, and even common infections can be extremely
dangerous.
Happily, most children respond well to drug treatments which
"kick-start" the body into producing new, healthy white blood
cells. However, a minority of children will require further
help in the form of a Stem Cell Transplant, usually from the
bone marrow of a healthy person. This is a difficult procedure
and requires the best possible cell match between the leukaemic
child and a donor. For more information see www.royalmarsden.gov.uk
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