How my child was diagnosed with neuroblastoma

Watch Alice's Neuroblastoma story video

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

Alice’s neuroblastoma diagnosis story

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 her neuroblastoma 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.


Alice with NG tube, having lost her hair

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.

Alice 5 days after her neuroblastoma 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

Alice’s neuroblastoma story update – November 2021

Alice made our hearts burst with pride at her resilience which got her through both treatment and her surgery for neuroblastoma, and today I am so proud to tell you she is in remission. After everything she’s gone through, watching her dance around the living room as we put up our Christmas decorations last year really felt like a miracle. I can’t wait to see it again this time.
Jamie, Alice’s dad, November 2021

Jamie and Alice Latham

How you can help

If you’ve been touched by Alice’s neuroblastoma story, 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.

Donate Now       Fundraise Here

Have you or a family member been affected by childhood cancer?

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.

If you have a story that you would like to tell, please contact us by email.


Alice and Heidi wish you all a Merry Christmas

Alice, Heidi and everyone at Children with Cancer UK, hope you have a happy festive season, and we wish you all the best for the New Year. It’s thanks to your continued support that Children with Cancer UK, can help fund life-saving childhood cancer research.

YouTube needs cookies in order to display videos.
Please Accept Marketing Cookies to watch this video.
Newsletter icon
Newsletter icon

Sign up to our e-newsletter today

Sign up to our e-newsletter and receive exclusive stories straight to your inbox. You will also find out about our latest childhood cancer research news along with updates on our fundraising events, charity news and opportunities to support us. Don’t miss out!

By signing up to this newsletter I agree to receive general and financial appeal emails from Children with Cancer UK