Family of Charlie Shilleto are ‘fighting the unimaginable’
Charlie Shilleto, two, who has been diagnosed with a rare and very aggressive soft tissue cancer called rhabdomyosarcoma(Image: Shilleto family)
A “kind, funny and gorgeous” two-year-old from Hull has been diagnosed with a rare and aggressive form of cancer. Charlie Shilleto had shown no apparent symptoms before his mum, Louisa, found a large lump under his arm when she went to bath him one evening in early December.
What followed was a rush to Hull Royal Infirmary children’s A&E; a blue-lighted journey to Leeds General Infirmary (LGI); a biopsy under general anaesthetic and many tests and scans, plus an agonising ten-day wait for news about Charlie. A week before Christmas, the Shilletos received the devastating diagnosis of stage four metastatic embryonal rhabdomyosarcoma, a rare and very aggressive soft tissue cancer.
“We’d been having a busy and stressful day untangling and hanging Christmas lights when I put Charlie in the bath and I noticed the veins in his chest looked extraordinarily blue,” said Louisa. “I shouted my husband up and he said, that doesn’t look right.
“We lifted his arm up and we could see a lump the size of a golf ball. I bath him every night and dress him every morning and there had been nothing up to then.
“We’d had my dad, Charlie’s grandad, round the day before and he’d said how bubbly Charlie was. You’d never have known there was something so sinister under the surface.”
The Shilleto family – parents Lee and Louisa with Charlie, two, and Oliver, seven(Image: Shilleto family)
It was discovered that Charlie had a large tumour taking up most of the left side of his chest and that it had spread to the lymph nodes under his armpit and in his neck. The cancer caused a hole in the little boy’s left lung, which subsequently collapsed, and the medical team in Leeds decided to start treatment – even before Charlie’s official diagnosis – in order to save his life.
Charlie has completed his first round of chemotherapy but faces another two years of gruelling treatment. His parents, Louisa and Lee, who previously both worked time and have an older son, Oliver, aged seven, are juggling life around his treatment and care.
Louisa said she does not know what the future holds for Charlie, as rhabdomyosarcoma has a high rate of relapse – and the treatment on relapse is extremely limited. “What we have seen from the first round of chemo is Charlie gets really ill.
“In the first week after he was very sick and got ulcers in his stomach and oesophagus. He didn’t want to eat or get out of bed.”
Charlie Shilleto, left, with his brother Oliver(Image: Shilleto family)
The family were home for Christmas Eve “in time for the big guy to arrive”, said Louisa. “The day after Boxing Day we ended up back in Hull Royal when Charlie spiked a temperature, and we came out again on New Year’s Eve.
“You look at what he is going through with his treatment and you think, why I am doing this to my little boy? It really is brutal.”
Louisa said: “You hope that after six months they say, ‘we’ve treated it, there are no signs of the disease’, but the problem with rhabdomyosarcoma is that it’s got a really high relapse rate.” She said: “Charlie’s age is on his side; we’ll see how he is responding as the treatment progresses.”
The mum added: “His brother Oliver isn’t doing great with it. We’re working with his school to try to put support in place and we’re lucky we have great support from our family network.”
Louisa’s sister-in law, Alysha Curtis, has launched a GoFundMe appeal titled “Support the Shilleto family through the unimaginable”. On the appeal page she calls Charlie her “kind, funny, gorgeous two-year-old nephew” who is under the care of the “brilliant paediatric oncology team” at LGI.
Family members “braved the shave” when Charlie Shilleto, two, lost his hair through cancer treatment(Image: Shilleto family)
She said: “Surgery is currently not an option for Charlie. It is all the more heartbreaking that Charlie doesn’t understand what is happening to him, and we can’t explain to him why we are putting him through painful procedures, making him stay away from his home and his big brother, or why strangers are prodding and poking him all the time.
“In between treatments, Charlie is very unwell due to the side effects of the chemo and is unable to live a normal life due to the fact his immune system is almost completely suppressed. He is susceptible to infections and therefore will need to be isolated for the most part of his treatment.
“He can no longer attend his childminder’s, play with other children his own age, or live a normal life. He requires full time care, which his parents, who previously worked full-time, are working their own lives around to be able to give him.”
Alysha said: “No family is ever prepared for this, emotionally or financially, and the strain a diagnosis like this brings is enormous. I’m setting up this page to try to help reduce the financial burden they are currently facing, while they fight the unimaginable, and to allow them to put all their energy into Charlie so that he has the best chance of beating this.”
Charlie Shilleto’s parents, Lee and Louisa (Image: Shilleto family)
She said every donation “no matter how small” would help towards things such as travel costs to and from Leeds; living expenses while away from the family home and “maintaining a small semblance of normality for Charlie’s seven-year-old brother, Oliver”, as well as making memories with Charlie on the days he is well enough to leave the hospital/house.
“I’m asking you for help, because my brother and his wife never would,” she said.