Dulcie's campaign

Dulcie's story

Dulcie loves listening to songs by Taylor Swift, Ed Sheeran and Justin Bieber and these will often be played on repeat during the day, especially when in hospital.  

Prior to her diagnosis, Dulcie had a swollen tummy and had been treated for impacted faecal matter however the swelling didn’t go away. Dulcie’s parents pushed for further answers, initially believing the swelling may be due to intolerances like coeliac or lactose.  

On Thursday 9th December 2021, Dulcie’s parents were given the devastating news that she had high-risk neuroblastoma, a rare and aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis.   

Dulcie’s family are fundraising for potentially lifesaving treatment, either to get their daughter into remission or to try and keep the cancer away if her frontline treatment goes to plan. This could cost hundreds of thousands of pounds. Follow Dulcie's story on social media. 

Treatment so far 

Dulcie started chemotherapy treatment in December 2021 as the first stage of frontline treatment and had nine rounds in total. In March 2022, Dulcie underwent an 11-hour surgery to remove her tumour, which weighed 1.2kgs. She spent time in intensive care and high dependency post-surgery.

After recovering from surgery, Dulcie received further chemotherapy. Her next set of scans showed the chemotherapy hadn't worked as hoped, and her cancer had not only increased in intensity but had also spread.

In April 2022 she received two cycles of cyclophosphamide & topotecan and in July 2022, Dulcie started BIT chemotherapy, which is a combination of drugs used for patients classed as relapsed/refractory. The aim was for the new combination of chemotherapy to stabilise the disease. Dulcie’s reassessment scans showed that the disease had stabilised, and no new spots were showing. Dulcie continued to receive further cycles of BIT chemotherapy.

In October, Dulcie’s scans continued to show stable disease, which meant she was eligible to enrol on the hu3F8 trial at Leeds Children’s Hospital. After completing two cycles of hu3F8, Dulcie was admitted to hospital as she developed Ileus, and was fitted with an NG tube and went on gut rest. She was unable to eat and go to the toilet for eight days and lost nearly 10lbs in weight. This was an unexpected side effect of Dulcie’s treatment.

Reassessment scans in December, prior to Dulcie starting cycle three of hu3F8, showed that her bone marrow had a complete response to treatment and her soft tissue remained clear of disease. Dulcie went on to receive a further two cycles of hu3F8.

After four cycles, January reassessment scans showed the great news that Dulcie’s bone marrow and soft tissue remained completely clear of disease. However, her SIOPEN score (which represents the extent of disease present in the body) was 16 at the start of her hu3F8 treatment and after two cycles came down to 12, which was not as much progress as hoped. Dulcie received a further two cycles of treatment, bringing her SIOPEN score down to 11 and then a further three cycles and her SIOPEN score is now 10.

In May 2023, after meeting with Dulcie’s doctor, the family were disappointed to hear that her SIOPEN score had only reduced to 10. The family were also told that Dulcie has germline mutation classed as SMARCA4, associated with Rhabdoid Tumour Predisposition Syndrome, which means she has a higher risk of developing further tumours as she grows up. She will be closely monitored with twice yearly check ups and scans.

Dulcie will have reassessment scans towards the end of June which will hopefully show that she is eligible to enrol on the MiNivAn trial at the University Hospital in Southampton at the end of July.

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

_{Funds raised will go towards helping Dulcie and her family. If Dulcie no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Dulcie, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.}