Adam's Appeal

In July 2009 Adam Lucas Bird was diagnosed with High-Risk Neuroblastoma (Stage 4 MYC-N amplified), a rare and aggressive cancer that affects about 100 children in the UK each year. As well as a 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 12 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 attempt to keep his body functioning normally. For the past year he hasn't been well enough to attend school other than for an occassional visit. Whilst his friends are thinking of their move into year two, Adam's memories of school remain rooted in reception class.

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 minimal residual disease. Even after all this the chance of relapse is high.

Although Neuroblastoma has a single name it’s manifestations are many and varied. Sadly Adam has fallen into the extremely rare group of children whose cancer does not respond well to treatment.

Having undergone an initial 3 months of intensive induction chemotherapy, a further 6 months of a harsher mix called TVD, and 3 months of yet another drug combination, Adam’s bone marrow tests have recently come back clear for the first time. Whilst this has been a positive development other scans still show widespread bone disease throughout his body.

Adam will soon undergo a second stem-cell harvest, the first attempt having gathered insufficient cells. Once stem cells are successfully collected and stored Adam will begin another period of intensive treatment which will see him hospitalized for most of the next 4 to 5 months. At the beginning of August Adam will undergo surgery to remove the primary tumour from alongside his adrenal gland and kidney. Once he recovers from surgery, most probably towards the end of August, he will the undergo internal MIBG (radiation) therapy in the hope that this will kill all the bone lesions that are spread throughout his body.

If Adam fails to respond to MIBG therapy it is likely to be the end of the road for treatments the UK has to offer. Our only options will be to seek to enroll Adam on clinical trials abroad, most probably in Germany or America. In such an eventuality all treatment from that day forth will have to be paid for using the appeal funds.

If MIBG therapy is successful Adam will progress to high-dose chemotherapy and bone marrow rescue using the stem cells that are currently being harvested. Once his recovery from this highly dangerous procedure is complete we would then seek to take him for the immunotherapy that will give him the best chance of a permanent cure. Due to Adam’s slow response to initial therapy he no longer qualifies for the main immunotherapy trials in either the UK or America. This exclusion of children like Adam from the trials is based on statistical considerations and supply of the antibody drug, not on an expected lack of effectiveness because of the extended amount of time taken to reach this stage.

The cost of treatment will run into hundreds of thousands of pounds. In America it is not unrealistic to expect to have to pay a $350,000 upfront deposit and fees of $100,000 per month. Once we leave the UK and NHS care everything will have to be paid for. Every hospital stay, every drug, every scan, every blood test.

Please help Adam in any way you can. Help to give our lovely little boy the future he deserves.