George's Story

A 2-year old’s struggle with rare liver cancer and the innovative treatments that played a crucial role in the child’s recovery.

3rd August 2023 was a date we will never forget. It was the day we were given the life-changing and devastating news that our gorgeous baby boy had been diagnosed with a rare cancer, rhabdomyosarcoma (RMS). It was also the day we began a long journey to fix him!

Our son, had just turned 2 when he became unwell – this was 2 months prior to the diagnosis. It became apparent he had an obstruction in his liver/bile duct as he became increasingly jaundiced. In and out of hospitals and finally we ended up at Kings College Hospital in South London. Within 48 hours a biopsy was undertaken, and we heard the unthinkable news – “your son has cancer”. I remember the moment with extreme clarity – it felt like my entire world had collapsed.

However, as is often found in life, the right people often ‘appear’ in your life and come to your rescue. This was no exception. Within hours we were whisked off to Great Ormond Street Hospital (GOSH) to begin the chemo. 3 rounds of 3 courses with a review after each 3 courses.

When we arrived at GOSH, we were offered whole genome sequencing under the R14 (NHS) program. The aim of this being to understand if there were any underlying genetic reasons for this cancer. When we had the results back it showed he had 2 very rare genetic conditions, Silver Russell Syndrome and Mosaic Variegated Aneuploidy (MVA) Syndrome which has a high predisposition to cancer– which seemed to be the underlying reason for the rhabdomyosarcoma. We will come back to MVA shortly.

After the first 3 rounds of chemo, we duly went for our planned review scan. The feedback was limited but worrying – apparently no shrinkage of the tumour. This was our first wake-up call! Shrinking the tumour was key in getting a plan in place to carry out a resection – removal of the tumour. So, we went for a second (private) opinion. Within a few days had a complete and very detailed review of the imaging, which showed that the tumour was in fact shrinking, and this was of course what we wanted to hear!

Two things now started to happen. Firstly, we continued forward with GOSH on the chemo. Another 3 rounds. Another scan. Verdict – no shrinkage still - although our second opinion team again suggested the opposite.  This prompted GOSH to look for a second opinion for us, which unearthed a White Paper from the Bicêtre Hospital in Paris. They had reviewed 30 children over about 10 years with RMS of the liver/bile duct.  No two cases were the same and with a data set of only 30 it was difficult to draw many trends. However, it did give us a huge lift that 70-80%of children with a similar tumour similar (stage 1, <5cm, embryonal, favourable location) survived beyond the 5-year point and many went on to live long and healthy lives (although none had MVA Syndrome).

Secondly, and in parallel, we began our own project of obtaining second opinions from world-leading experts in paediatric liver/bile duct RMS patients. Professor Anil Dhawan (who heads up the amazing paediatric liver team at Kings College Hospital and the Rays of Sunshine ward) was instrumental in helping us with this. Along with Prof Anil’s help, we lined up consultations with Taiwan, USA, India, Russia (proton beam therapy), Germany (radio-pharma), France and London.  His energy, positivity and network helped us pick our way through this maze to have meaningful conversations with the right people in a timely manner and begin to formulate a plan. It culminated in a visit to Paris and an international MDT meeting between Kings College Hospital and the Bicêtre Hospital teams.

The result was this. Finish the last 3 rounds of chemo. Then to undertake a groundbreaking procedure. It was a 2-stage operation. Firstly, to use Nano Knife Technology (IRE) on the tumour and surrounding area of the liver.  This would give the surgeons the ability to get a better margin of clearance around the tumour when they did the resection, which would enable the right side of the liver to be left with clear margins.

So, in early March, our son had his operation at Kings College Hospital. We waited for the results and were quickly told that everything went totally to plan. The 2-stage procedure had been a success – initially at least. The surgeons had managed to remove all the tumour and had clear margins all the way round the removed section of his liver (an R0 resection that we had all been hoping and praying for).

To date, he is the youngest patient in the world to have received Nano Knife Technology and is the first paediatric patient to have received a treatment like this on his liver in the UK.

There are too many people to thank individually but two people have stood out for us. Consultant Sharon Jheeta at St Mary’s Hospital has remained by our side throughout this journey. Secondly, Prof Anil Dhawan at Kings College Hospital has been the best advocate we could have asked for in pulling together the best team and innovative treatment plan to be able to get George successfully through this operation.  We cannot thank you both enough.

As I write this article (March 2025) George remains fit and healthy.