11th July 2013 Update:
It is with sadness that the NCCA UK announce that Adam lost his courageous battle against neuroblastoma on Thursday 11th July 2013.
A statement from Adam’s dad Nick reads:
“Just after 9am 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”
Here is Adam’s story:
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.
Since his diagnosis Adam was cared for by one of the country’s leading paediatric cancer care units. He had surgery to remove a gland in his neck, an intravenous line fitted directly into his heart for drug administration, underwent 8 months of intensive chemotherapy, endured dozens of invasive testing procedures and needed numerous blood and platelet transfusions. He also had 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 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 he had radiotherapy and then 6 months of oral chemotherapy and antibody therapy to mop up any undetectable residual disease.
In Adam’s case the cancer did not respond well enough to treatment. His bone marrow remains infected and scans still showed disease spread throughout his body. Without being clear of detectable disease Adam cannot move forward to the other stages of treatment.
Sadly Adam passed away on 11th July 2013.