22nd November 2013 Update:
If you would like to make a donation in Adam's name for research please visit http://www.justgiving.com/adamb-ncca
TO SEE ADAM'S MOST UP-TO-DATE APPEAL GRAND TOTAL PLEASE CLICK ON ADAM'S NCCA UK TEAM HALF WAY DOWN THE PAGE - THANK YOU.
11th July 2013 Update:
It is with extreme sadness that the NCCA UK received the news that Adam has lost his courageous battle against neuroblastoma on Thursday 12 July 2013.
Everyone at the charity sends their sympathy to his parents, Alison and Nick and to his sister Jessica and brother Jake. Our utmost thoughts and heartfelt prayers are with them all at this very painful time.
A statement from Adam’s dad Nick reads:
"Just after 9 this morning lying in our bed at home as we held his hand, stroked his hair, and told him we loved him, our beautiful son Adam took his last breath and left this world. He will live on forever in our hearts. x"
Our son Adam is suffering from a rare and aggressive children's cancer called Neuroblastoma. We desperately need your help to raise money to allow us to take Adam to America for treatment that could save his life. Having a child in this situation is every parent's worst nightmare. Since he was diagnosed last year our world has been turned completely upside down. Adam is frequently hospitalised and our life is consumed by medication and treatment and stress. We cling to the hope that Adam will stay strong long enough to get the treatments he needs and that they will make our family whole again.
In July 2009 our son Adam was diagnosed with High-Risk Neuroblastoma (Stage Four MYCN amplified), a rare and aggressive cancer that affects about 100 children in the UK each year. In addition to the primary tumour in his abdomen, the disease had spread to his bone marrow, his lymphatic system, and other distant areas of his body. Like the vast majority of Neuroblastoma patients Adam had an advanced form of the disease before it was discovered. Early symptoms are vague and unremarkable - reduced appetite and increased tiredness.
Since his diagnosis Adam has been cared for by one of the country's leading paediatric cancer care units. He has so far had surgery to remove a gland in his neck, had an intravenous line fitted directly into his heart for drug administration, undergone 8 months of intensive chemotherapy, endured dozens of invasive testing procedures and needed numerous blood and platelet transfusions. He also has to take a daily cocktail of other drugs to counter the side-effects of the chemotherapy and to try and keep his body functioning normally.
The treatment of High-Risk Neuroblastoma is harsh and unrelenting but it needs to be to combat this aggressive cancer. Children who achieve clean bone marrow and mIBG tests results after the initial rounds of chemotherapy must undergo a stem cell harvest, surgery to remove any solid tumours, high-dose chemotherapy to wipe out their bone marrow and stem cell rescue to transplant the previously harvested stem cells back into the body to allow new bone marrow to be grown. Finally they will have radiotherapy and then 6 months of oral chemotherapy and antibody therapy to mop up any undetectable residual disease. Even after all this the chance of relapse is high.
In Adam’s case the cancer has not responded well enough to treatment. His bone marrow remains infected and scans still show disease spread throughout his body. Without being clear of detectable disease Adam cannot move forward to the other stages of treatment. He is to undergo another two additional 7-day cycles of a harsh chemotherapy regimen to try and get him to the next stage. Adam is currently undergoing a 6-month course of immunotherapy in Greifswald, Germany.
Despite all this treatment mIBG scans, the most reliable test for neuroblastoma, show widespread bone and bone marrow disease.
There are no further options for Adam in the UK. After treatment in Germany ends we do not know precisely what the future holds, however, our most likely destination will be America - to enroll Adam on early phase clinical trials in the hope of keeping his disease at bay.
It is for these treatments, treatments that are not available in the UK, that we urgently need to raise funds to enable us to take Adam to America. We are not 100% sure at this time what these will be, or when. It is an incredibly costly endeavour and we need to raise hundreds of thousands of pounds. Unless we raise the funds now our options for Adam's treatment will be limited precisely when we need to get him the best available treatment regardless of cost or geography.
Please help Adam in any way you can, however big or small. Together you could make the ultimate difference to this lovely little boy's future.