Lottie looking into the camera with facepaint onLottie was diagnosed with Stage 4 MYCN amplified neuroblastoma on October 4 2010, at the age of 3. Doctors found a tumour in her abdomen and next to her adrenal gland and told mum and dad Suzanne and Mark that the cancer had spread to Lottie’s lungs, pelvis and bone marrow.

She immediately started treatment at the Oxford Children’s Hospital where she underwent a two-month course of rapid COJEC chemotherapy - so called after the names of the chemotherapy drugs used. Lottie was placed on a UK immunotherapy trial.

At the end of the chemotherapy in December 2010, doctors found that the tumours in her abdomen, which was wrapped around her aorta and lower vena carvea, had decreased in size. The cancer had stopped spreading to other parts of her body. Lottie’s bone marrow tests also came back clear.

Surgery

On 2nd February 2011, the day before her birthday, Lottie underwent surgery to remove the abdominal tumours, an operation that took over 8 hours. After her surgery, the doctors were still confident the cancer had not spread any further. She had a stem cell harvest which unfortunately failed, so Lottie then had surgery to remove her bone marrow. In March 2011, Lottie started her second round of high dose BUMEL chemotherapy – a very intensive and gruelling chemotherapy treatment. It was so tough on Lottie that she spent nearly seven weeks in hospital, including a spell in intensive care where she was thoroughly poorly.

She underwent her stem cell rescue procedure as part of this process. Lottie came home on the 8th May but had to return to hospital for yet more surgery. Lottie had vomited so much when she was having the high dose chemotherapy that she had to have ten acid-damaged teeth removed. Suzanne and Mark asked which ‘arm’ of the SIOPEN trial their daughter had been randomised to, and 60 days after Lottie’s stem cell rescue they found out. They then were faced with a difficult choice as to stay in the UK and start Lottie’s treatment 120 days after her initial diagnosis, or to decide to go to America for help by day 100.

Travelling to America

Lottie then received 14 days of radiotherapy treatment as required by both the European and American protocols. Her treatment funded by Solving Kids' Cancer, Lottie and her family travelled to the United States in July 2011 so that Lottie could receive the Children’s Oncology Group neuroblastoma treatment, which uses the antibody ch14-18, and cytokines IL-2 and GM-CSF.

This treatment helped stimulate her immune system so that Lottie’s own body is able to recognise and attack the neuroblastoma if it was to return. This is always a worry with this deadly disease, where the relapse rates are high. The treatment Lottie is receiving in the United States was not available in the same format in the UK, where anti-GD2 and IL2 or just anti-GD2 alone are available as part of a trial. This is why she went to America to get the treatment she needed to potentially give her the best chance to beat the disease.

Lottie’s mother Suzanne said, “I would ask anyone who wants to help children with neuroblastoma to make a donation to the Neuroblastoma Alliance UK (now Solving Kids' Cancer). Mark and I want the charity to be able to help other children who have yet to come forward so that they too can get the help they need. There is no way, with the stress of having a child with such a vile cancer, that we could have raised the money in time for Lottie to receive this life-saving treatment. We will be forever indebted to the charity and the wonderful people that make this happen for families like ours. Every penny really does make a difference to the children that need help.”

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