Lottie

Lottie’s story

Lottie was diagnosed with stage 4 MYCN amplified neuroblastoma on October 4 2010, at the age of three. Doctors found a tumour in her abdomen next to her adrenal gland, which had spread to her 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. Lottie was then placed on a UK immunotherapy trial. 

At the end of the chemotherapy in December 2010, doctors found that the tumour 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. 

Treatment

On 2nd February 2011, the day before her birthday, Lottie underwent surgery to remove the abdominal tumours, an operation that took over eight 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. 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 were then faced with a difficult choice as to whether 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. With her treatment funded by Solving Kids' Cancer UK, Lottie and her family travelled to the United States in July 2011 so that Lottie could receive the Children’s Oncology Group neuroblastoma treatment - using the antibody ch14-18, and cytokines IL-2 and GM-CSF. 

This treatment helped stimulate her immune system in the hope that 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 received in the United States was not available in the same format in the UK, where anti-GD2 and IL2 or just anti-GD2 alone were available as part of a trial. This treatment was successful for Lottie and she and her family returned to the UK in December 2011.

Life post-treatment

Lottie is now 16 but since returning to the UK has faced many challenges, including having focal nodular hyperplasia in her liver, fatty liver disease and both type one and type two diabetes. She also has total pre ovarian failure and is deaf to high frequencies. She has struggled with school and being able to face normal life, which has resulted in her having anxiety and depression alongside autism. Her mum says that post-treatment has been very hard for Lottie in the UK as her consultants struggle through lack of knowledge on the conditions she has and how they interlink. However, she also tells us that Lottie is always positive and wants to be a vet in the future as she loves animals.

<sub>Solving Kids' Cancer UK's children's fundraising campaigns 

Funds raised through a child's fundraising campaign for access to treatment are spent on their treatment and pastoral needs. Any remaining funds, and all funds raised after five years post the end of the child's treatment, are used to support other children and families through Solving Kids' Cancer UK's activities.</sub>