The story so far..
In May of this year our beautiful 7yr old daughter Robyn was diagnosed with Stage 4 Neuroblastoma, a rare and aggressive form of childhood cancer. The tumour was growing from her pelvis and had spread to her bone marrow.So far her treatment has consisted of 8 doses of chemotherapy, given every ten days (Robyn has had 9). She has spent the majority of this time in hospital for chemotherapy, infections requiring intravenous antibiotics, or for blood / platelet transfusions, stem cell harvests, scans and bone marrow aspirates. When not in hospital the community nurses must visit on an almost daily basis to administer Robyn’s medication for her.At the beginning of September Robyn underwent a 9 hr operation, during which her tumour was removed. It had wrapped it its self around various nerves within her pelvis and spine. Unfortunately the surgery has caused nerve problems - she has repetitive neuropathic pain in her right leg and is currently unable to walk. We have been told that this should improve in time with further physiotherapy.On the 4th of October Robyn was admitted to the Royal Marsden Hospital where received a high dose chemotherapy over 5 days to ‘wipe out’ her bone marrow. She then had own previously harvested Stem cells given back to her to assist her bone marrow to recover. This resulted in her being her very ill and in hospital for at least 6 weeks.
She will then have a further 3 weeks of radiotherapy and then 140 days of oral medication.Her condition will be reassessed at the end of her treatment. We have been told that if the cancer returns, it will not be treated in a curative way. Unfortunately the chance of relapse with Neuroblastoma is high leading to such low rates of survival.So, with a prognosis of 40% survival, our biggest fear is a relapse after the intense, aggressive treatment that she has endured so far. Preventative, antibody treatment is currently not available in the uk. To increase her chances of survival it is crucial that she benefits from such treatment that is only available in the Memorial Sloan-Kettering hospital in New York. This treatment has to be given at the same time as the final phase of the treatment – the 140 days of Retinoic Acid and the cost is in excess of £300,000 We think this treatment will start in January so we haven’t got long to raise the amount of money so needed to give this very brave little girl the extra chance of survival that she so desperately deserves.Please help us.The 2Simple Trust (Reg. Charity No.1113954) raises money to benefit children suffering from neuroblastoma, to fund research into neuroblastoma, and to achieve other charitable purposes which seek to assist those children suffering from neuroblastoma. The Trust welcomes general donations and donations to designated appeals (these can be found a twww.2simpletrust.org)
