Hello all. We are now updating regularly with the latest developments. We really appreciate all your fantastic support, so please do leave a comment, join the Facebook group (top right) or get in touch!
In May of 2009 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 and she underwent multiple doses of chemotherapy. Robyn spent the majority of this time in hospital for her chemo, infections, transfusions and harvests. The tumour was growing from her pelvis and had spread. At the beginning of Sept 09 Robyn underwent a 9 hr operation and her tumour was removed.
It had wrapped it its self around various nerves within her pelvis and spine.Click here for full info More
Unfortunately the surgery caused nerve problems - she had repetitive neuropathic pain in her right leg and was unable to walk. We were told that this could improve in time with further physiotherapy. On the 4th of October Robyn was admitted to the Royal Marsden Hospital for her Stem Cell Transplant. She received a high dose chemotherapy over 5 days to ‘wipe out’ her bone marrow.
MIBG, CT and Bone marrow aspirates were done at the end of November 09 in the UK and these came back clear. We were told at that time, by the doctor who gave us the full diagnosis in the UK, that if the cancer returns, it will not be treated in a curative way.Click here for full info More
She then had 3 weeks of radiotherapy. This was to be followed by 6 months of a drug called Accutane which has been proven not to kill Neuroblastoma cancer cells but to mature them - which is what we want!!
Unfortunately the chance of relapse with Neuroblastoma is very high leading to such low rates of survival.So, with a prognosis of between 20 - 40% survival (depending on which UK hospital is treating your child), our biggest fear was that Robyn would relapse after the intense, aggressive treatment that she has endured so far.Click here for full info More
Preventative antibody treatment currently available to ALL children in North America is PROVEN to increase 5 year, event free survival to 66%. This is HUGE in cancer! So, to improve our precious baby’s chances of survival Greg and I felt it was crucial that she benefited from Immunotherapy available at The Children’s Hospital of Philadelphia - CHOP. This has to be given at the same time as the final phase of the treatment – the 6 cycles of Accutane - and the cost is in excess of £300,000. (We were initially planning to take Robyn to Memorial Sloan-Kettering Hospital in New York but the induction protocol followed by the children in the UK could have made these antibodies ineffective).
Click here for full info More
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The Robyn Higgins Appeal is now registered as a 2Simple Charity
