Welcome to the Ashley Hyde Appeal Website
Ashley, our son, is a very happy and cheeky little boy. On the 9th June 2008 at the age of just 5 years he was diagnosed with stage 4 mycn amplified neuroblastoma.
Neuroblastoma is an aggressive childhood cancer. The disease is caused by abnormal neuroblasts or nerve cells which are special cells present in babies and children that help create the adult nervous system.
Tumours originate from the sympathetic nervous system, which runs from the neck to the tailbone and can spread to other organs, bones and bone maorrow. If the cancer is diagnosed early, surgery and chemotherapy can be curative, but in 70% of cases the disease is not diagnosed until it has already widely spread, unfortunately this was the situation with Ashley.
Upon diagnosis Ashley had a 12- 10 - 8 cm tumour above his left kidney and wide spread disease to the bone marrow in both legs, hips, shoulders and 1 arm.
Ashley’s little body started an incredibly hard battle to rid the neuroblastoma in it, Ashley under went 70 days of chemotherapy called RAPID COJEC a mixture of Vincristine, Carboplatin, Etoposide, Cisplatin and Cyclophosphamide. The neuroblastoma did respond, halving the size of the mass and clearing 95% of the bone marrow, but unfortunately there were still 4 small ‘hot spots’ that were visible on scans.
Ashley then went on the have 4 rounds of a harsher mix of chemotherapy called TVD (Topotecane, Vincristine and Doxorubicin). This helped clear some of thesecondary cancers which were widespread. Ashley then underwent a complex operation to remove the remaining tumor, a stem cell harvest, high dose chemotherapy Busulfan and melphalan at dangerously high levels which in itself is life threatening. This made Ashley very ill and wiped out any immunity that was still clinging on. His immunity and could now take years to recover to the same as that of the average child.
After high dose Ashley had 14 rounds of radiation to the abdomen area, he then went on to start a six month course of differentiation therapy this is used to turn immature neuroblastoma cells, into mature cells that die. There is evidence that this is But is more effective when given in conjunction with immunotherapy, but unfortunately was NOT available in the UK at the time Ashley needed it.
The Ashley Hyde appeal was started originally to raise funds to take Ashley to the Memorial Sloan-Kettering Cancer Center in New York who specialize in treating neuroblastoma.
We were fundraising for Ashley to have a treatment called 3f8 antibodies (Immunotherapy) .
Immunotherapy is used after tumors have been surgically removed, when the patient has only minimal disease left (in the bone marrow, for example). This treatment is designed to train the body's own immune system to detect and destroy neuroblastoma cells that have survived chemotherapy or radiation therapy, with this treatment survival rates are greatly improved and the relapse rate is much less.
The problem is that there is a cut off date with antibody treatment (usually about 100 days) because after that period the child’s own immune system has recovered to the extent that when the antibody treatment is infused, the immune system mops up the treatment before it gets near any cancer cells.
Sadly we simply ran out of time and had insufficient funds so couldn’t take Ashley to America for the much needed antibodies that could have increased his survival rate.
Devastatingly on the 22nd December 2009 just before Christmas and Ashley’s 7th birthday we were told that a routine 6 month check up has revealed that Ashley has relapsed dispite all the treatment he has already gone through.
The routine scan showed Ashley has a 1 - 2 cm lesion to the brain and neuroblastoma has re-established in the bone marrow.
There are no words to describe how sad and worrying this is. Currently there is NO proven treatment or protocol in the UK for a relapse. The doctors in the UK can only do their best with the treatments and facilities that they have. Our best hope for Ashley now is to seek alternative treatment protocols in America.
Please, please help support Ashley in what will be the hardest battle of his life.
