Happy, full of life, a whirlwind of loveliness, five-year-old Lulu just has a great big smile that lights up the world. But in January 2018, just months after starting school, she was diagnosed with high-risk neuroblastoma and it had spread to her bones, bone marrow and lymphatic system.
Lulu immediately started chemotherapy and surgery more chemotherapy, stem cell harvest, high dose chemotherapy, radiotherapy and immunotherapy (which she is currently having) followed.
Thanks to your donations Lulu is accessing treatment in New York – a clinical trial her family hope will reduce the chances of her cancer coming back. If that happened to Lulu, her chances of survival would drop to less than one in ten.
“We received the amazing news that our little girl is in remission, now we just hope we can keep her cancer from returning,” says Rob, Lulu’s dad.
When Lulu started school in 2017 she absolutely loved it, making friends straight away and being the first person to help other children struggling to settle in.
But by the middle of November, she just wasn’t herself. She was tired and had a loss of appetite.
“We wondered if it was starting school full time. But by the beginning of December she had lost weight too so we took her to the doctors,” says Rob.
The blood test showed she was very anaemic so she was given iron to supplement her diet. But with no improvement and now a pain in her groin, Rob was insistent the doctor referred Lulu to the hospital.
“After a week of tests the hospital did an MRI scan and found a mass in her little tummy and we were told she had some form of cancer. That evening Lulu was transferred to Addenbrookes hospital for a biopsy and the next day we were told she had neuroblastoma. Further tests showed that the cancer had spread to her bones, bone marrow and lymphatic system.”
Starting treatment the very next day
Lulu initially had nine rounds of chemotherapy which was followed by a seven and a half hour operation to remove her main tumour.
Then there were two more doses of chemotherapy, a stem cell harvest and then high dose chemotherapy which involved 17 doses in one week.
“The impact of this high dose chemotherapy was that it completely wiped out her immune system so she had to be kept in isolation for 33 days to ensure she was not impacted by any bugs or viruses,” says Rob.
“Lulu lost her beautiful blond hair quite quickly during the first rounds of chemo, which we found very difficult. There were other side effects too, like sore throats, nose bleeds, and pain throughout her whole digestive system.”
Lulu then had three weeks of radiotherapy and six months of immunotherapy which lasted until May 2019. Her family then got the fantastic news that Lulu showed no evidence of disease.
Taking its toll
“Lulu and her mum Clare have spent so many nights in hospital this year and many more as an outpatient, while I’ve continued working full-time to pay the bills and keep a stable home for our 11-year-old son, Archie,” says Rob.
“Clare had to give up her dream job working with children and when all this is happening you struggle with the cost of cancer, being one income down. The hospital is 40 miles away from home and this year we have done an additional 20,000 miles.”
Lulu’s future remains uncertain. There’s a chance she could relapse and if Lulu does, her long-term survival rate would drop to less than one in ten.
So her family fundraised for £162,000 to access the Bivalent Vaccine clinical trial at the Memorial Sloan Kettering Cancer Center in New York, which is showing promising signs in reducing the likelihood of relapse. The treatment is not available on the NHS or privately in the UK.
Lulu will travel for seven vaccinations, finishing in summer 2020.