Lottie has been fighting high-risk neuroblastoma since she was 2 ½. A happy little girl with a sweet wilful nature, she loves to create and adores anything pink and sparkly.
Now 4 years old, Lottie has been responding well to frontline standard treatment and is due to finish immunotherapy mid-September 2017. This will mark the end of her treatment in the UK, at which point it is hoped that her end-of-treatment scans will show no evidence of disease.
Then, to keep Lottie in remission and help prevent relapse, which she is more susceptible to because her primary tumour had MYCN markers, her next step will be to access the Bivalent Vaccine clinical trial at Memorial Sloan Kettering Cancer Center, New York. Her family and treating team have identified this as the best option to help keep Lottie neuroblastoma free.
Lottie and her family remain ever positive and prepared to fight and have been appealing for your help to raise £155k to access the trial; cover the associated costs (e.g. travel and accommodation); and to ensure a contingency for any unforeseen complications.
Thanks to the incredible support they’ve received, the family met their fundraising target on 15th September. They now have enough funds in place for Lottie to access the treatment, which pending confirmation of her eligibility, they hope she can do very soon.
“We will never leave her side. We’ll never give up, we’ll fight with her, for her, and next to her.” Lottie’s parents, Charlotte and Dave.
Enjoying a holiday in Cornwall, Lottie had fun exploring the beach and surroundings. She’d play on the beach, and on the rainy days, she’d jump in the puddles! Whilst Lottie was away on holiday her older brother and sister, who had stayed at home due to their examination timetable, both become unwell. Kids being kids, her parents knew Lottie would be next.
Lottie began vomiting on Sunday and was up most of the night. The next day she slept on and off but by Tuesday, although Lottie had stopped being sick, she still seemed under the weather. On Wednesday, Lottie seemed much better and went off to her childminder’s while her Mum went to work. At 10.30am, Charlotte received a call from the childminder because Lottie was very unwell. “I went to collect her and took her straight to the GP. I thought I was being over protective but I just couldn’t help it.”
A paramedic, who happened to be at the surgery, saw Lottie and agreed that something wasn’t right. He wanted Lottie to be checked over at the local hospital and wrote a letter for Charlotte to take to the Accident and Emergency department. “I remember the drive. Lottie asked where we were going; I said Mummy was being a silly sausage but wanted to ask the doctor to check that her tummy was ok. She told me I was indeed a ‘silly sausage’.”
At the hospital, a nurse, then a doctor, took Lottie’s temperature and blood pressure. The doctor felt Lottie’s tummy following which, wanted to send Lottie for an x-ray. When Charlotte and Dave asked why she needed an x- ray, they recall, “He avoided making eye contact and said he wanted the x-ray to see ‘why’. He avoided answering the question.”
Following the x-ray Dave and Charlotte were told a blockage was visible in Lottie’s bowel, which the medical team believed was caused by poor nutrition. In the knowledge that Lottie had a healthy and varied diet, her parents refuted the diagnosis and asked for an ultrasound, which was arranged immediately.
Charlotte lay on the couch with Lottie and put the jelly on her tummy because she didn’t want the sonographer to do it. When the ultrasound examination began, Charlotte looked at the screen and could immediately see a huge black shadow. Dave had seen it too and squeezed Charlotte’s hand and mouthed, “What’s that?”.
As the sonographer continued, Charlotte looked at the nurse, hoping that she’d smile and tell her that everything was okay. But she didn’t.
“We knew this was bad, really bad.”
The sonographer confirmed that Lottie’s bowel was healthy but that they could see a mass near her liver, kidney and adrenal gland which, they were told, was likely to be cancer. On hearing those words, Charlotte remembers screaming the words, “No, no, no, you are wrong.” Lottie’s Dad, Dave says, “I told Charley to stop screaming and that we would fix it.”
Lottie and her family were moved to protective isolation for further tests. Charlotte recalls how, “words like Wilms, Neuroblastoma and Lymphoma were being floated around”, and how the hospital was consulting with The Royal Marsden Hospital and the Evalina London Children’s Hospital.
Charlotte says, “I held Lottie as tests continued, telling her it was ok, when it was actually far from okay. It was so scary to hear our daughter being spoken of alongside these world renowned hospitals. I didn’t sleep; I paced the hall at night but gave smiles of reassurance during the day.”
The next day the family was transferred to St George’s Hospital in Tooting, where a medical team was waiting to prepare Lottie for a biopsy of the tumour and bone marrow aspirates. This was the only way to confirm the diagnosis.
Charlotte recalls her thoughts at the time, “How far has this thing spread? What did I do? What didn’t I do? Why?”, and how physically sick she felt leaving Lottie to go under general anaesthetic for the procedures. By this point Lottie’s family had all been told what was happening, apart from her brother and sister for fear of frightening them. Everyone was still hoping the doctors could be wrong.
Lottie’s grandmother, Phyll, joined Lottie and Charlotte at St. George’s and stayed for a week on a camp bed to support her daughter through the uncertainty. Charlotte recalls, “The pain in my own mother’s eyes is something that will always stay with me. Imagine watching your baby trying to help her baby.”
When Lottie came round, she went downhill very quickly. Her bloods weren’t right and she slept constantly. She was moved to intensive care and her tummy grew rapidly. “I begged them to do something, make it stop growing and taking over. I needed to start fighting back, I wanted to start fighting back”, says Charlotte. Lottie had become unrecognisable and continued to sleep all day and night with her mum by her side.
It was on day 3 at St. George’s that the family were called into a room and given the devastating news. Lottie had Stage 4 High Risk Neuroblastoma.
Neuroblastoma is a particularly aggressive form of childhood cancer, and the most common cancer outside the brain in children under 5 years of age. In most cases, it is only diagnosed once it has already progressed to a late ‘high risk’ stage, like in Lottie’s case.
“It was painful to be told that our daughter would lose her hair and most likely not be able to have her own children”, says Charlotte.
Just 3 hours following the diagnosis, chemotherapy began.
“It was scary to look at the chemotherapy but Lottie immediately started improving, searching for me with her eyes, holding my hand and playing with my fingers,” recalls Charlotte. The next task was for Charlotte to tell Lottie’s brother and sister.
Lottie’s fundraising campaign
Relapse rates for neuroblastoma are high, and the survival rate for relapsed neuroblastoma is less than 10%. This statistic worsens with every relapse. Relapsed neuroblastoma is particularly challenging to treat and there are limited options to treat it; all of which exist in the form of clinical trials, some in the UK and some abroad. Many families, just like Lottie’s, will choose for their child to access these experimental therapies in an attempt to help prevent cancer returning or to get their child back in to remission.
Lottie’s family and treatment team have identified the Bivalent Vaccine clinical trial in New York to try to help keep Lottie’s cancer away. They have raised enough funds to secure Lottie’s access to this treatment and therefore, any additional funds raised will be held for Lottie for a period of 5 years post the end of her treatment in case she needs them.
How you can help
There are many ways you can help Lottie; by making a personal donation; holding a fundraiser; getting sponsored to take on a challenge; or simply following and sharing Lottie’s story through her Facebook and Twitter page.
Download our free Lottie resources (below) to support your fundraising, and click here for even more resources, including fundraising ideas, templates and guidance.
You can make a donation via this page, or if you’d prefer to text donate, text LWJJ86 and your amount £1 – £10 to 70070. If you’d like help supporting Lottie’s campaign, please get in touch with the fundraising team on 0207 284 0800 | firstname.lastname@example.org.
“Lottie is our baby and we won’t lose her. Thank you so much for all of your support for Lottie.” Lottie’s parents, Charlotte and Dave