Dulcie’s Neuroblastoma Story

Dulcie was diagnosed with stage 4, high-risk neuroblastoma on 9 December 2021, when she was just five years old. Her mum, Debra tells their story so far: Support children like Dulcie so that they have a future they deserve.

Dulcie in hospital bed with tube up her nose.

Initial misdiagnosis

Dulcie was just 5 years old when she was diagnosed with cancer. It came as such a shock because cancer was not even on our radar. No one ever expects to hear the words, “Your child has cancer,” but there we were, and in the space of 24 hours, life as we knew it was forever changed. For most of 2021, we were told Dulcie had a condition called ‘impacted faecal matter.’ She was on various medications, including senna, laxido, and movicol. At one point, she was taking eight sachets of movicol a day. It was already so difficult getting her to manage one sachet, let alone eight.

Discovering the mass

After spending 24 hours on the toilet non-stop, I insisted she stop this treatment and requested a blood test. At the time, I was convinced she had coeliac disease. Thankfully, the doctor agreed, and she was scheduled. On 24 November 2021 at her follow-up appointment is when this doctor suspected something other than IFM and after his examination and that of his senior colleague is when they suspected something else. They concluded that what they were feeling wasn’t ‘poop’ but something that was smooth and solid, as IFM would have a more mouldable consistency. They referred us to the local children’s assessment unit (CAU) for further evaluation.

My world came crashing down

We were called to the CAU that afternoon. We were there for several hours, and I lost count of how many doctors came to see Dulcie, pressed on her abdomen, and asked questions. It was all such a blur. Finally, around 8pm, we were pulled into a room and told that Dulcie was being admitted to the ward as they suspected cancer. We were advised to go home, rest, and return the next day for two long days of testing. At the end of day one, it was confirmed that Dulcie had a mass in her abdomen and that it more than likely was cancerous, however we still had another day of tests ahead of us. It was finally confirmed after those two long days that ‘Dulcie has CANCER’ – nothing prepares you for those words and our entire world came crashing down around us.

Starting treatment

Dulcie was fitted with a Hickman line and had biopsies done. On 9 December 2021, it was confirmed: Dulcie had Stage 4, high-risk neuroblastoma. She was immediately put on a standard protocol of RAPID COJEC, surgery, stem cell harvest, radiotherapy, and immunotherapy. The journey was expected to take around 18 months. The initial treatment worked to slow the disease’s progress, but she was still considered advanced, needing additional treatment with CycloTopo.

The longest day of our entire lives

After two rounds of CycloTopo, we discovered the cancer had spread, and Dulcie was now classified as relapsed. Dulcie was really suffering at this point, with countless blood and platelet transfusions, and so it was agreed that they would take out her tumour. On 16 March 2022, Dulcie underwent a high-risk surgery to remove the tumour. She was admitted the night before to get her prepped for the surgery, and we were told it could take up to 12 hours and was very high risk. This was probably one of the longest days of our entire lives. It took 10 hours, and they successfully removed the entire tumour and some lymph nodes. The tumour weighed 1.2kg and measured over 30cm in length – how this was mistaken for ‘poop’ I’ll never know.

We needed a new plan

Once she recovered, Dulcie started her third frontline treatment, a trial drug called BIT. It was at this point that we were told every time Dulcie starts another frontline treatment, her odds of beating the disease reduce. After 3 rounds of the new drug, we headed back for reassessment scans to see how well she was doing and hopefully beating the cancer. This was not the case; the cancer was not getting worse, but it wasn’t getting better either, so we needed a new plan.

A choice of clinical trials

We were presented with two clinical trial options that Dulcie was eligible for: one in Leeds and one between UCLH & Southampton. We did lots of research of our own and listed the pros and cons for each trial. The Leeds trial had been open in the UK for four years, but until Dulcie, no child had been eligible for it. After this, we chose the Leeds trial (Naxitamab immunotherapy) and started round one of this during October 2022.

My heart broke into a million pieces

Nothing could have prepared me for what Dulcie would have to go through. The pain she endured was beyond anything we could have imagined. I just remember her screaming and writhing in pain. She would scream, “Just let me die, Mommy, let the nurses kill me.” My heart broke into a million pieces that day. Dulcie has no recollection of anything she said, but I do. Even today, I can recall every single hour, minute, and second of that treatment and feeling absolutely useless that there was nothing I could do but pin her down, so she didn’t hurt herself too much.

“Mommy, what will happen if I don’t beat cancer?”

Each round got easier to deal with but was still horrendous. In total, she completed 9 rounds of the treatment: 7 mandatory rounds and 2 as maintenance. Her results after this trial again were good but not enough in reduction of the disease to qualify her for high dose, so Dulcie was referred to the second clinical trial. The MiniVan trial required a five-week stay in London and bi-weekly visits to Southampton. The travel was exhausting, but we were determined to do whatever it took to kick cancer’s butt. During this time, Dulcie asked a heartbreaking question: “Mommy, what will happen if I don’t beat cancer?” How I didn’t completely fall apart, I’ll never know. But I managed to tell her that that was not an option, and we will do everything we can to make sure she does beat it.

Hopeful results

After completing the MiniVan trial, Dulcie’s reassessment scans brought amazing news. She had almost beaten cancer, with only one small spot left in her femur. She was finally eligible for high-dose chemotherapy and a stem cell transplant, which began on April 15th, 2024. At the end of 7 days of high-dose chemotherapy, Dulcie had a seizure and was very unwell for a short while. This delayed her having her stem cells back, but remarkably she bounced back rather quickly and received her stem cells back on 25 April 2024. During this treatment, Dulcie suffered almost every side effect and lost her hair again. This has affected her so much more this time round than when she was younger.

Hope for the future

As of today, Dulcie is home and recovering. We don’t know what our next steps will be, so we take each day as it comes, hoping for the day when Dulcie can ring the ‘end of treatment’ bell.

Debra, Dulcie’s mum, May 2024

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