Emily's Story
Emily was only 5, a little girl, a princess just like any other child until that desperate day in August 1999 when she was diagnosed with Leukaemia.
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 match 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 cold 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 16 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 15 and on 9th January 2009 was 6 years post transplant; although still constantly under the supervision of the hospital is doing very well.
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.
A Message From Emily Ash:
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.nhs.uk/rmh.