Little George Baker had never blown the candles out on his birthday cake before – he had always been too poorly.
But when he turned seven, after a rollercoaster journey which saw him fly to the States and even receive part of his mum’s liver to help fight a rare cancer, he managed celebrate for the very first time. Cara Simmonds reports…
It was at the age of two when Catherine Baker, from Sevenoaks, learned her son needed chemotherapy.
Her son, George, had developed eczema on his scalp when he was born and it had gradually become worse.
She added: “At the same time he started to become a lot more tired, he was very pale and he would wake in the night with severe tummy pain.
“He was no longer his usual happy self.”
After being admitted to Tunbridge Wells Hospital in Pembury and taking a number of blood tests, George was sent to the specialist paediatric liver unit at King’s College.
The tot was diagnosed with Langerhans Cell Histiocytosis (LCH) – a rare cancer that usually presents itself as a skin rash, but can damage tissue or cause lesions to form in one or more places in the body.
It affects one in 200,000 children and there are around 50 new cases every year in the UK.
Catherine and her husband Sam were told that George’s LCH was in his bone, liver and spleen.
The family were referred to the Royal Marsden Hospital and, at just two years old, he began 12 months of chemotherapy and steroids.
“It was quite a surreal experience,” the 42-year-old said. “It was almost unbelievable and utterly terrifying.
“Because it was a cancer and needed to be treated with chemotherapy, there was very little time to process any of it.
“We were told his liver had been destroyed and there was nothing we could do to remedy that.
“It was like our lives had been blown up, but there was no time to reflect on it.
“It wasn’t as though you could crawl into bed and not get up – life kept going. It was heartbreaking.”
“When we first went into the Marsden, we were surrounded by children who had lost their hair and had feeding tubes – it was almost an out-of-body experience.
“As the weeks went on, my perspective changed. Even when George lost his hair, I still saw my child. I didn’t see his illness.”
George responded well to treatment and on May 21, 2020 was given the all-clear.
However, six days after receiving the good news, the mum-of-three noticed a piece of dry skin on his scalp and realised the LCH had returned.
She said: “We found ourselves in an appalling situation.
“Doctors explained that George would require up to five further rounds of more aggressive chemotherapy before anything else could be done.
“But his liver, already damaged by the cancer, was unlikely to withstand further treatment.”
She added: “We did everything we possibly could. They said there was no other options available for him and he might not survive.
“It was almost too much for me as a mother to comprehend.
“We were effectively handed a death sentence for our child. In my heart I knew there was another way.”
Catherine, who grew up in the US, was told about an alternative method by a family friend.
Dr Ashish Kumar, an oncologist at Cincinnati Children's Hospital in Ohio, treated LCH differently.
Five days after contacting him, the family flew out to America.
“He immediately took George off the chemotherapy and put him on an inhibitor which stops the mutation that causes George’s LCH,” Catherine explained.
“It is a daily medication that he continues to take today; it is unclear how long he will need it, but it has none of the side effects of chemotherapy.
“Within two days of starting the inhibitor, George’s skin rash started to disappear.”
The family returned to the UK two weeks later in positive spirits, but during a routine blood test it showed George’s liver was starting to deteriorate.
Over the next 18 months he developed portal hypertension, became severely jaundiced and had an abnormally swollen abdomen.
In December 2021 they were told he would need a transplant.
“Sam and I both knew that time was of the essence and also that there is a shortage of donor organs suitable for children,” Catherine explained.
“We were therefore keen to investigate living related donation and, as I have the same blood type as George, and Sam is not a match, we knew that I was the only option.
“As a parent you will do anything you can for your child.
“But there was a moment or two when I thought ‘I would give my life for George in a heartbeat, but we have two other children’.
“We went to King's College Hospital and met the transplant team.
“I knew we were in the best possible hands – it then became a total no-brainer.”
His surgery, last April, took 13 hours.
At the same time, 25% of Catherine’s liver was removed to give to her son.
She said: “Sam told me you could see the jaundice leaving George’s body.
“He spent less than 24 hours in intensive care; within one week of the transplant he was walking up and down the stairs and after four weeks he was running up and down the ward kicking a football.
“We have both been incredibly fortunate in our recoveries.
“George was like a completely different child, with more energy than he’d had in years.
“Twelve weeks post-transplant he competed in his school sport’s day and he hasn’t really stopped moving since!”
The family were helped by the Children’s Liver Disease Foundation (CLDF) after the transplant.
Formed in 1980, the UK charity provides information, emotional support and research on all childhood liver diseases.
If you would like to find out more, click here.
George celebrated turning seven last month, on October 17, with his parents as well as sisters Alice and Beatrice – an opportunity he has never previously been able to have.
“There’s no doubt that after the rollercoaster few years we have had, this has been a very special birthday,” his mum added.