NOVEMBER 2012 UPDATE

Bailey is fighting neuroblastoma, an aggressive childhood cancer. His family started fundraising for life-saving treatment abroad, but at the last minute Bailey was able to join a new immunotherapy trial which has started at Great Ormond Street Hospital in London. He began treatment there on 12 November 2012.

This means that Bailey will get the treatment he needs and the family will not have to travel and live abroad for months and months. While the treatment that Bailey is about to receive is part of an immunotherapy trial, it is not exactly the same as the treatment children receive in America, where three drugs are used instead of the two that Bailey will receive.

Bailey's appeal with the Neuroblastoma Alliance UK for treatment costs abroad has been put on hold and all funds raised for Bailey so far will be ring-fenced and will remain available for Bailey should he need clinical treatment abroad in the future.  We urge anyone who has an event planned for Bailey to go ahead with their fundraising as planned. Any funds raised for Bailey will be kept for him in his special fund. Should Bailey not require treatment abroad in the next 5 years, then the funds raised will be used to help other children with neuroblastoma.

13 year old Bailey Sarwa has beaten neuroblastoma, an aggressive childhood cancer, once before. However, in 2011, the cancer came back. Bailey’s parent Chris and Becki have been told that there are no relapse protocols to treat Bailey in the UK. Bailey now needs to receive relapse therapy in America, to give him a chance of life. The treatment Bailey needs is likely to cost in excess of £500,000 - it will not be funded by the NHS which is why Bailey needs your help. 

Becki said, “I did my best to try and reassure Bailey that we would get through it again. The doctor...asked Bailey if he had any questions. Bailey asked her, “Does it hurt to die?" I felt as if my heart was being torn out. My wonderful, brave son reached for my hand and said, “Don’t cry mum – I’m going to win”.

Bailey was diagnosed with stage 4 neuroblastoma in the summer of 2003, aged 4. He immediately started frontline neuroblastoma treatment at Great Ormond Street Hospital. In 2011, aged 12, Bailey’s neuroblastoma came back.

Bailey had rapid COJEC chemotherapy followed by surgery to remove the tumour that was adhered to his adrenal gland and left kidney. As part of a randomised clinical trial, Bailey received GCSF (G-CSF (granulocyte-colony stimulating factor), a growth factor that stimulates the bone marrow to make more white blood cells.

After 2 years of extensive chemotherapy, radiotherapy and successful stem cell harvesting, in 2005, Bailey was pronounced free or neuroblastoma and in remission. Bailey grabbed life with both hands and his proud parents watched him thrive.                         

In September 2011, almost 7 years later, 12 year old Bailey was admitted to his local hospital complaining of extreme pain in his neck and lower body.

Some weeks later in October 2011, following a referral to GOSH, Bailey’s parents Becki and Chris were devastated by the news that Bailey had relapsed with stage 4 neuroblastoma. Although no tumours have been found and Bailey’s bone marrow is not showing any disease, another kind of bone marrow test, a trephine biopsy, does indicate the presence of neuroblastoma.

Becki said, “Following the relapse diagnosis I did my best to try and reassure Bailey that we would get through it again. The doctor did her best to explain and asked Bailey if he had any questions. Bailey asked her, “Does it hurt to die?”

I felt as if my heart was being torn out. My wonderful, brave son reached for my hand and said, “Don’t cry mum – I’m going to win”.

Bailey, now aged 13, is currently undergoing chemotherapy in the UK but has not improved since December 2011. Chris and Becki have been told that there are no relapse protocols for Bailey in the UK. Chris and Becki want Bailey to receive relapse therapy in America, to give him a chance of life.

This proposed treatment will not be funded by the NHS which is why Bailey needs your help. The therapy Bailey requires is likely to cost in excess of £500,000. If you can help, please make a donation to the Neuroblastoma Alliance UK, or organise a fundraising event to raise money for Bailey's Appeal. Please give as much as you can afford to help save Bailey and other children like him.

Chris said, “We will not give up on our son. He is such a kind, strong boy and we are determined to offer him a second chance to beat neuroblastoma…but we can’t do it without your help. Every donation, no matter how small, will make a difference.”

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate for Bailey now.