Our daughter Alice was diagnosed High Risk Neuroblastoma, at just 15 months old in December 2013. This page is about her journey as she battles this cancer. Alice’s Story
In December 2013 Alice was admitted to our local hospital for some tests after a routine check-up raised some concerns. An ultrasound showed she had a tumour on her kidney. We went from having a perfectly healthy and active chil
d to now being faced with a potential diagnosis of cancer. Nothing can prepare you for this and no words can describe how you feel but denial and shock, are probably the closest. We were transferred to Our Lady’s Hospital for Sick Children in Crumlin and a CT scan confirmed there was a tumour the size of a grapefruit on Alice’s left adrenal gland above her kidney. She had surgery two days later to remove the tumour. The surgeon was confident that he removed the entire tumour, but until we got the biopsy results we didn’t know what we were facing so we waited. Amazingly after 3 nights in intensive care Alice was back to the curious and happy girl we know and love. After an anxious few days Alice’s diagnosis was confirmed. Alice has high risk Neuroblastoma and started 18 months of intensive treatment in early January 2014. The treatment includes 8 rounds of rapid induction chemotherapy every ten days, followed by high dose chemotherapy and a stem cell transplant, radiotherapy, differentiation treatment and immunotherapy. This treatment will likely make her very ill and with potential serious long term side effects. Although the cancer had not spread past the tumour site the tumour cells show a genetic abnormality called N-MYC Amplification which means her disease is very aggressive and very likely to spread and be terminal if left untreated and the chance of relapse is also high. Neuroblastoma is a rare cancer that affects the sympathetic nervous system. Children diagnosed with neuroblastoma are usually younger than 5 years old and only about 10 cases are diagnosed in Ireland every year. High-risk neuroblastoma is harder to cure and is more likely to become resistant to standard therapies or come back after initially successful treatment. Although Alice may be declared in remission after this aggressive treatment the likelihood of the cancer returning is extreme high and relapsed neuroblastoma has very few treatment options in Ireland. Thankfully there are new clinical trials in America and Europe to both try and prevent a relapse and to potentially treat relapsed neuroblastoma. These treatments cost hundreds of thousands but they could be Alice’s best chance for a future. Alice is a very social and active toddler and loves life. She loves going to the playground, looking after her dolly and playing peekaboo. She loves the characters Peppa Pig, Doc McStuffins, Mickey Mouse and absolutely anything to do with horses. She is horsey mad! Just like every little girl her age Alice just wants to play, laugh and have fun as she discovers the world around her.
