Ed’s dad John and friends Martin Bastow and Nick Evans, supported by Ed's uncle Barry Cummins, are cycling from Glasgow to John o’Groats in Ed’s memory. This is to raise money for Ward 34 and Oncology Day Beds at Bristol Children’s Hospital,  both of which gave Ed considerable support over the course of his illness and particularly during the last few weeks of his life.

The route is 378 miles and we’ve set ourselves 7 days in which to do it. It demands a total of 39,121 feet of climbing, which is why we’ve called it Everest for Ed.  Everest is only 29,035 feet – but given that Ed was a larger than life character who never did things by halves, it seems appropriate to do the extra climbing in his name! 

Every day in the UK ten families are told that their child has cancer, and embark on the kind of treatment journey that Ed and his family undertook.  Any money raised will provide additional resources to assist children with cancer and their families as they follow this path.  £6,000 had already been raised in Ed's memory by donation and fund raising, prior to setting ourselves this challenge.

 

A bit about Ed

Ed was born on 26^th October 2000.

His passions in life were his family, particularly spending time with his brothers Jack and Louis, animals, particularly reptiles, of which he had an incredible encyclopaedic knowledge, eating out, mainly meat dishes as Ed described himself very much as a meat eater and shopping, particularly for rubber lizards. His rubber lizards were his constant companions from a very early age.

Ed became unwell in August 2003 and was diagnosed with Acute Lymphoblastic Leukaemia (ALL) at Bristol Children’s Hospital.

This is the most common of childhood cancers and requires over three years of treatment for a boy, slightly less for girls. ALL is a disease of the bone marrow which affects the production of blood and which without prompt treatment is fatal. Ed underwent a 10 month intensive treatment regime involving chemotherapy, steroids, regular blood and platelet transfusions and lumbar punctures (chemotherapy injected into the spine). This was followed up by two and a half years of maintenance treatment with daily chemotherapy tablets and brief intensive treatment periods.

Over the course of his treatment Ed had extremely low immunity and was accordingly required to live a very sheltered life, avoiding places where he might pick up infections and being unable to participate in activities such as swimming as he had a permanent Hickman line inserted in his chest to assist with his treatment and weekly blood tests. The risk of infection meant that holidays, attendance at school, and activities that children take for granted were generally only possible when Ed was feeling well. Ed completed his treatment in November 2006 and began to resume a normal life. 

In January 2008, Ed began to feel unwell again and following tests at the Children’s Hospital it was confirmed that he had relapsed. As the previous treatment regime had not cured Ed, and the disease had returned in a more aggressive form, he now required a bone marrow transplant to save his life.

Between January and June 2008 Ed underwent conditioning for his transplant while a donor was found. This entailed intensive chemotherapy and radiation therapy to kill the disease and Ed’s own bone marrow prior to transplant. This made Ed extremely ill and required him to spend considerable periods in hospital. He received his transplant in June 2008, spending four weeks in isolation. Although he was discharged from hospital briefly, he had to return for almost two months with serious complications, after the transplant. He managed to pull through and, after a long period of convalescence, Ed began to resume a normal life in April 2009.

Ed relapsed for a second and final time in October 2009 and died on 22^nd October, four days before his 9^th birthday.

Why we are doing it

We are doing it in memory of Ed and also to raise money for Ward 34 (Paediatric oncology ward) and Oncology Day Beds at Bristol Children’s Hospital (care of the Charitable Trust for the United Bristol Hospitals - Registered Charity No. 229945).

These two units gave Ed considerable support over the course of his illness and particularly during the last few weeks of his life. The constant risk of infection meant frequent trips to the hospital, often in the middle of the night, whenever Ed developed a temperature. A bed was always found on the ward to enable prompt infection control treatment to get underway.

Similarly, ODB was a regular destination for blood tests and treatment. The ODB staff were always happy to examine and check Ed in the event of any concern on our part and get any necessary treatment underway promptly. It is a very welcoming and reassuring place for families dealing with extremely difficult circumstances.

We were extremely fortunate to have had such a supportive environment on our doorstep.

 

SEE WHAT THE BRISTOL EVENING POST SAID AT http://www.thisisbristol.co.uk/news/Family-s-fundraising-tribute-brave-Ed/article-2102345-detail/article.html

 

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