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Alice's story

Alice was diagnosed with high-risk neuroblastoma, with MYCN amplification in 2019, a week before her second birthday. Her dad Jamie shares their story.

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little girl wearing pink beret

Alice’s diagnosis was a complete bombshell

In January 2019, a week before my daughter’s second birthday, we received the news no parent ever wants to hear – our beautiful little girl had cancer. Over the previous month, Alice had had a chest infection and chicken pox and we had noticed that her stomach had become swollen and she was losing weight on her arms, legs and bottom. An ultrasound scan revealed a large mass in her abdomen and we were told she either had a Wilms’ tumour or neuroblastoma. It was a complete bombshell.

After a few weeks of tests and scans to ascertain the exact nature of the tumour, we were devastated to find out that Alice had a particularly aggressive form of neuroblastoma; high-risk neuroblastoma, with MYCN amplification, which basically meant that it was the hardest to treat and most prevalent form of the disease. It completely changed our lives. Everything we assumed would follow a normal course in life suddenly didn’t exist anymore. Our little girl was seriously ill.

Alice before treatment

A daunting treatment plan

The tumour was growing rapidly and had almost trebled in size within the three weeks of exploration before the start of treatment. This aggressive form of neuroblastoma requires a prolonged, hard-hitting programme of treatment starting with an 80 day rapid course of chemotherapy to attempt to reduce it in size ready for a major operation to remove it (if possible, as it isn’t always).
One positive element was that Alice’s cancer didn’t show any signs of having migrated to her bone marrow and as such she could have her own stems cells ‘harvested’ for use later after ‘high-dose’ chemotherapy. The programme would then continue with radiotherapy and immunotherapy alongside differentiating therapy, all of which would take around 18 months to complete (on paper).
Following treatment the statistical prognosis for this type of cancer is around a 40-50% chance of survival. It seemed such a mountain to climb and we felt daunted and overwhelmed at what was in front of us all, wondering how Alice’s little body would be able cope with such an onslaught and how on earth were we going to keep things ‘normal’ for our other daughter, Heidi, aged 7.

 

Bald girl with NG tube with girl in glasses

The difficult road to surgery

After her first session of chemotherapy, Alice’s tumour haemorrhaged and despite the attempts to stem the bleed in the hospital in Sheffield, she was rushed to Leeds General Infirmary for emergency interventional radiology. The surgeons accessed the tumour through an artery in her groin and after six hours of painstaking work, managed to embolise the bleed. It undoubtedly saved her life.

As we carried on through the next few months of treatment, we spent many weeks in Leeds and Sheffield children’s hospitals and Alice was very poorly after respiratory failure, catching infections and the chemotherapy throwing her electrolytes totally out of kilter.

Following this Alice had her nine hour surgery which managed to remove the entirety of the tumour. It has to be said that we consider ourselves extremely lucky as this is often not the case for many children with neuroblastoma. Five days later, to our amazement, Alice was home and dancing around the living room, which was incredible given the major surgery she had just come through.

5 days after surgery

Continuing treatment

A few weeks later, Alice had high dose chemotherapy and a stem cell transplant. It was so hard to watch but again she defied the odds, recovering quickly and thankfully avoided some of the potentially serious side effects such toxic drugs can throw up. Of course she has experienced the roller-coaster of all the ‘usual’ and unpleasant side effects of treatment such as hair and weight loss, lack of appetite, skin irritation, allergic reactions and sickness which all present daily challenges for parents and children alike.

But she is progressing well through the rest of her treatment. There will always be the need for the odd unplanned stay in hospital and like all the other parents of children we have met, it is just part and parcel of having a child with cancer.

Alice has made our hearts burst with pride at the near miraculous resilience she has shown so far. It is hard to imagine many things tougher than witnessing your child having to endure the cocktail of toxic drugs to give her the chance at the life you before, simply took for granted.

Girl in polka dot dress on sofa

Research into kinder treatments is urgently needed

Neuroblastoma affects around 100 children each year in the UK and in the region of 4-10 of those have the high-risk MYCN amplified variation. More research into the disease and its treatment with kinder therapies to improve the prognosis for these children is urgently needed.

We have come to understand through our journey that the NHS does so much but simply cannot do everything and it’s crucial that this type of research is supported and funded through charities such as Children with Cancer UK. We were really encouraged to hear about the research Dr Helen Bryant and Dr David King have conducted, looking at whether drugs already being used in other cancer treatment could somehow benefit neuroblastoma patients.

We hope beyond hope that little Alice will never need second line treatment but we understand that there are no guarantees where this disease is concerned and we are sure that parents in our situation also understand this all too well. The sooner we can accelerate our understanding and treatment of MYCN amplified neuroblastoma the better.

For now we can see the light of the end of treatment in the distance and we look at our daughter with pure admiration. She is spirited and a total inspiration and what is more she doesn’t even know it!

Girl with no hair and feeding tube wearing a blue denim jacket

How you can help

If you’ve been touched by Alice’s journey, help us invest in the high quality research that really matters which would otherwise go unfunded.

This helps to support children with cancer so they can be with their families for longer.

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Many of our supporters have been affected by childhood cancer – either through family, friends or their own personal experience. These patient stories can help inspire others to get involved with us, or can support our media work.

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Alice's story and the neuroblastoma research that could help

Alice was diagnosed with high-risk neuroblastoma a week before her second birthday. Watch the video to find out more about her story, as well as the exciting research we’re funding at Sheffield Children’s Hospital that could help.