In the UK, around 100 children are diagnosed with neuroblastoma each year. It is a tumour arising from particular nerve cells, which run in a chain-like fashion up the back of the abdomen and chest into the skull. Usually neuroblastoma is discovered in the first few years after birth, but because Lulu’s wasn’t, it had a chance to spread and do more damage. She had surgery to remove the main tumour but the cancer had already spread to her lymphatic system, her legs and bone marrow.
Since January, Lulu has had at least 28 doses of chemotherapy, countless nights in hospital including 33 days in isolation, multiple blood transfusions and stem cell transplants. Next on her schedule is radiotherapy and immunotherapy which will continue until at least summer 2019. The treatment schedule is very aggressive to treat this horrible disease.
Lulu’s parents are so proud of the way she has handled everything she has been through.
There are many painful side effects of Lulu’s treatment, but one of the hardest things for her to deal with is being separated from her 11 year old brother, Archie, and being away from home. She has also missed a lot of school, as she is either at hospital or has a high risk of infection due to her treatment, so she has missed her school friends a lot too.
The cost of supporting Lulu’s treatment schedule is one of the many hidden impacts of cancer.
Lulu’s mum used to work at her school as a Teaching Assistant but has had to give up her job to care for Lulu.
The long commute to and from the hospital has taken it’s toll on Lulu’s family financially. However, her local hospital does not offer the specialised treatment she needs, so they have no choice. With her mum unable to work, these costs have had even more of an impact.
"After high dose chemotherapy, Lulu had three weeks of radiotherapy and has now started immunotherapy which will last until May 2019. This involves tablets at home for three weeks followed by a ten day stay in hospital having an infusion to treat the cancer which needs to be combined with morphine as it can be quite painful.
"Lulu has developed some complications. Her lungs have been damaged by the high doses of chemotherapy so her lung capacity has been reduced by 30%. At this stage we do not know if the damage will be permanent. She also has an issue with her kidneys which is causing high blood pressure which will need a further operation to resolve.
"Neuroblastoma is one of the most aggressive childhood cancers with a 50% relapse rate. If you relapse, your chances of survival are just 10%. We have discovered that there is further treatment available which trains your immune system to identify cancer and eliminate it. This treatment is only available in one of the leading cancer centres in the world, the Memorial Sloan Kettering Centre in New York. We now need to raise £162,000 to fund this treatment to give Lulu the very best chance of survival."