Maya's campaign

Maya's story

“There were virtually no signs at all, just unexplained lethargy and a persistent fever, which was always seen as a ‘viral infection’,” says Maya’s mum, Dellanie. 

After ten weeks of uncertainty surrounding Maya’s health, Dellanie and Maya’s dad, Terry heard the words that would change their lives – your child has cancer. Maya was diagnosed with stage 4 high-risk neuroblastoma in her left adrenal gland – she was three years old. 

Over a 20-month period, Maya endured ten cycles of chemotherapy, stem cell harvest, surgery, stem cell transplant, high-dose chemotherapy, radiotherapy, differentiation therapy and immunotherapy. She also had countless injections, blood and platelet transfusions and general anaesthesia. She really went through the mill, and her beautiful brown hair fell out. Dellanie describes the time as ‘harrowing’. As well as mucositis, Maya suffered from haemorrhaging, horrendous nosebleeds, and VOD (veno-occlusive disease) of the liver.  

Dellanie and Terry suffered as parents too, exhausted from the pain of watching their child go through everything and putting on a brave face when they didn’t always feel that strong. Fortunately, the family had great support – they feel forever indebted to all the wonderful people, and the excellent NHS team who looked after their precious girl.  

Maya came to the end of her frontline treatment, and despite ‘hot spots’ evident on her October 2018 scans, doctors didn’t think it was active disease, so no further treatment was planned for Maya in the UK. Knowing how aggressive Maya’s cancer was and the high relapse rates, her mum and dad were not comfortable accepting a wait-and-see approach.  

Next steps 

The family had started fundraising with Solving Kids’ Cancer UK in case Maya needed any treatment not available on the NHS, and following frontline treatment, hoped Maya could access the bivalent vaccine clinical trial at the Memorial Sloan Kettering Cancer Center in New York, to try to increase the chance of the cancer staying away.  

Treatment was required to begin within six months of finishing immunotherapy and within 45 days of end of treatment scans, so 25th February 2019. But the family were short of the full funds needed. Knowing that a child’s best chance of beating neuroblastoma is when they are fighting it for the first time, Solving Kids’ Cancer UK took the decision to set aside reserve funds to cover the shortfall so Maya could begin the treatment. Maya started treatment in February 2019.  

Fundraising continued and in June 2020, Solving Kids’ Cancer UK was able to revise down the campaign’s fundraising target for a second time to £85,000. This was made possible by the personal sacrifices the family made to ensure the least expensive options at every stage. Fundraising continued with urgency, and in September 2020 the fundraising target was reached. This enabled Solving Kids’ Cancer UK to replenish its reserves to allow for the next child who needed help.  

Maya finished treatment in 2020 and had six-monthly ultrasound scans of the abdomen. The family experienced some specific challenges as Maya was diagnosed with ASD (autism spectrum disorder) in June 2022. She is also being investigated for ADHD (attention deficit hyperactivity disorder). 

Relapse and further treatment

After ongoing knee and groin pain, leaving her almost immobile, in July 2023 Maya’s parent took her to A&E where she had an MRI scan. Results from her MRI came back inconclusive, so she had further scans which devastatingly confirmed Maya had relapsed with widespread skeletal disease, just days after her 10th birthday. The family's world was once again turned upside down and they were thrown back into a world of hospital stays and treatments.

In August, Maya started her first cycle of BIT chemotherapy. She struggled with the effects this had on her body and experienced side effects such as loss of appetite, lack of energy and strength, persistent diarrhoea, mouth sores and ulcers. Maya went on to complete two more cycles of BIT with reassessment scans in October showing Maya’s disease had a partial response to treatment and there was still no disease in the soft tissue.

Maya had a further four cycles of BIT with reassessment scans taking place just before Christmas. The scans showed Maya’s disease was continuing to respond well to treatment. Maya will start cycle 12 of treatment in April with re-assessment scans taking place in mid-April.

_{Solving Kids' Cancer UK's children's fundraising campaigns} 

_{Funds raised will go towards helping Maya should she need further treatment not available through the NHS. Maya's cancer, high-risk neuroblastoma is aggressive with high rates of relapse. At relapse, the chance of survival is extremely low. If Maya no longer needs the funds or is in remission five years post the end of treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities.}