Charlotte, or Lottie, as mum and dad Suzanne and Mark call her, was diagnosed with Stage 4 MYCN amplified Neuroblastoma on 28 September 2010, at the age of 3. Doctors found one very large tumour in her abdomen and another in her adrenal gland. They told Suzanne and Mark that the cancer had spread to Lottie’s lungs, pelvis and bone marrow, with other smaller tumours in her abdomen. She started treatment at the Oxford Children’s Hospital on 4October 2010. Lottie experienced complications following a biopsy and spent 5 weeks in hospital. Read her story below...

 

During this time Lottie began a 70 day course of rapid COJEC chemotherapy (so called after the names of the chemotherapy drugs used). Lottie was placed on a UK immunotherapy trial. (This is a trial where UK researchers are testing the antibody anti-GD2 and one of the cytokines that the American Children’s Oncology Group uses in the US trials, IL-2. Children are randomised, by computer, to receive either anti-GD2 and IL-2, or just anti-GD-2 alone.)

 

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

 

On 2 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 7 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 8 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 10 acid-damaged teeth removed, and now only has 10 teeth.

 

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.

 

Lottie then received 14 days of radiotherapy treatment as required by both the European and American protocols. Lottie and her family traveled 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 will help stimulate her immune system so that Lottie's own body should be 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 is not available in the same format in the UK, where anti-GD2 and IL2 or just anti-GD2 alone are available on trial. This is why she has travelled around the world to get the treatment she needs to give her the best chance to beat this disease.

 

Lottie’s mother Suzanne said, “I would ask anyone who wants to help Lottie to make a donation to the Neuroblastoma Alliance UK. 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!” 

All donations are paid into NCCA UK’s general funds to further its general charitable purposes.  The funds raised by this Journey are not restricted for Lottie’s use.  However, the trustees of NCCA UK have agreed to designate funds raised by this Journey to help Lottie and her family pay for potential future treatment costs and all other associated costs including travel and accommodation.  If Lottie no longer needs the funds, or if the trustees decide, at their absolute discretion, that the funds should be used for a different purpose, they may redesignate all or part of the funds for NCCA UK’s general charitable purposes.  We are very grateful for your charitable donation.  For further information about NCCA UK and how we spend donations, please see our FAQs http://www.ncca-uk.org/faqs

 

All donations are made to the Neuroblastoma children’s Cancer Alliance UK’s general fund, from which the trustees allocate funds for: treatment for the child concerned, as well as research, education, awareness and administration costs.