Brave Ben's Superstars Fund helps to raise money for the Superstars who save lives daily!

Ben was diagnosed in April 2006 with a Tumour called a “Desmoplastic small round cell tumour” which is a very rare and aggressive soft tissue sarcoma.  It was a 12cm tumour in his pelvic area, which was pressing on his sciatic nerve.  Ben was rushed to Birmingham Children’s Hospital, where we were told treatment protocols, and also told that its position made it inoperable.

Back to North Staffs, into Ward 110 – the Gordon Banks Oncology centre (named the Heroes room by patients), where treatment started.

In all Ben underwent:

Operation to fit a Hickman line, 7 doses of high intensity Chemotherapy, 6 months of twice daily injections of anti-coagulant, 5 MRI scans, 3 CT scans, 6 chest X-rays, 3 heart echo scans, 3 kidney function tests, 2 bone scans, innumerable Ng feeding tubes fitted, physiotherapy to get him walking again, an operation to fit a saline spacer bag into his abdomen, 6 weeks of intense radiotherapy (which burned the skin off his body), an operation to remove the spacer, 9 doses of maintenance chemo, 23 blood transfusions, 8 platelet transfusions, and eventually an operation to remove the Hickman line – and not a single complaint!! 

Ben started Treatment on April the 1^st 2005, and finished on March 31^st 2006, 1 year to the day!

Since February 06, the consensus was that against all the odds – the tumour was DEAD!

We kept a rough tally of the people involved in bringing about this miracle, as the weeks went by.  We tried to add up everyone from the GP who referred him, the consultants, surgeon, nurses, Macmillan Nurse, radiographers, ambulance drivers, porters, cleaners, theatre staff, anaesthetists, dieticians, support workers, play therapists, physiotherapists, psychologists, blood donors, platelet donors, Edwards house staff, Howeward who shipped in Ben’s feed, home tutors, teachers, Lab staff, chemo manufacturers, stores workers, pharmacy, accommodation officers, district nurses, community nurses, Ultrasound specialist, radiotherapists, radiotherapy planning staff, Heart echo testers, Kidney testers, bone scanners, Treetops hospice staff, Make a Wish staff, CLIC Sargent staff, Holistic healers, faith healer.

By the End of May 2005, the tally had already reached 302 people. By the end of his treatment, a conservative estimate was 482 people – a staggering number, and if you add in most of North Staffordshire Church community who were praying (thanks to friends of ours), all of ABB and the Drives Alliance, for their unswerving support, and of course the support of super Amy (our Daughter) and our families and friends, without whom we would definitely not have made it, then the number grows immeasurably.

Ben relapsed on 28th December 2006, after 9 months free of the disease and underwent another 3 doses of Chemo, 8 platelet transfusions and 6 blood transfusions. The tumour continued to grow inexorably, until the doctors withdrew treatment and gave him 3 weeks to live. On 30th March 2007, Ben died. He had managed to remain well and happy, active and positive right up until the last 3 days. He showed incredible courage carrying around a lump, which made him look pregnant, and again, never a single complaint!! He showed courage beyond his 8 years and the 300 people at his funeral obviously agreed. We miss him immeasurably but know we must show equal courage and live on, making a difference to other cancer sufferers in his name.

We can NEVER repay these people for the dedication and support they have given to us, but we can try and give some small token of appreciation back, and with your help, we can help to reward and fund these Superstars in their unselfish, dedicated, unsung and crucial work.

Please take a look at the organisations we have chosen to be the Beneficiaries for Money Raised by the Fund

Thanks for your support

Andy, Alison, Amy (and Ben)