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TRUST YOUR GUT

I was told my son’s sore eye was just hay fever – but my worst nightmare came true

A MUM was told that her son’s sore eye was just hay fever, only to find out the nightmare-ish truth.

Kerry O'Kelly is now urging other parents to trust their instincts and get anything suspicious in their children checked out as it is “better to be safe than sorry”.

River Rhodes before he became unwell
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River Rhodes before he became unwellCredit: Kennedy News
River's eye drooped and bulged before his diagnosis. He's pictured in hospital
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River's eye drooped and bulged before his diagnosis. He's pictured in hospitalCredit: Kennedy News

The 42-year-old noticed her seven-year-old son River Rhodes' right eye beginning to “droop” when they took selfies together.

When River's teacher also pointed out that his eye seemed to be changing, Kerry decided to send photos to their GP in September 2021.

The GP prescribed antibiotics to treat conjunctivitis.

Kerry, from Wolverhampton, said: "He wasn't in any pain and he could see fine. It just looked like it was drooping and it wasn't irritating him.”

When the swelling worsened, River was taken to New Cross Hospital and didn't question a diagnosis of hay fever.

Kerry, who organises arts and crafts workshops, said: “They flipped his eyelid and said it was probably hay fever which made sense because his dad suffers with hay fever and River had a runny nose not long before.

"We were given hay fever medication and said they wanted to see him again but about a week later it had got a lot worse.

"He was getting upset about it and calling himself ugly so I told him not to worry about it but eventually it was bulging like a frog's eye.

"Eventually, I thought his eyeball was going to get pushed out. His eyes weren't level because one was drooping."

In November, River had more investigations at the hospital - as Kerry's fear kicked in.

Kerry said: "I could tell there was something wrong.

"They found a lump underneath and I got teary. I was thinking he's going to have an operation to remove this lump. I didn't think of anything else.

"Then they said he'd need an MRI and a biopsy.

"The doctor checked the lump again the next day and it'd already got bigger.

"I was hoping they'd say it was probably nothing and they were just checking but their faces said it all and as a mum you have an instinct.

"I knew it was something bad. I just didn't want it to be anything to do with his brain.”

He was such a happy, caring kid. Kids don't deserve it. Why not me or his dad?

KerryRiver's mum

Kerry and River’s dad, Ryan, 37, received the devastating news that their son had cancer.

River’s bulging eye was a key feature of rhabdomyosarcoma (RMS), a rare type of cancer that typically affects children.

Kerry said: "It broke my heart when he was diagnosed. I thought he was probably going to die because that's what you think when you hear 'cancer'.

"You don't think it will happen to your child. I had two healthy children, now I have one.

"I don't understand how it's happened to him. Why him? He was a healthy kid, he doesn't even get coughs or a cold.

"When I tell people, they can't believe what they're hearing because the last time they saw him, he was fine.

"He was such a happy, caring kid. Kids don't deserve it. Why not me or his dad?”

'He could lose his eyesight'

Rhabdomyosarcoma is cancer of soft tissue, connective tissue or bone. It can arise anywhere in the body.

Symptoms when rhabdomyosarcoma is located in the head may include a headache, bulging or swelling of the eyes, and bleeding in the nose, throat or ears. 

Kerry said her little boy “hates his life” due to the impact the cancer has had. 

However, she said: "River doesn't know he has cancer. 

“We've told him it's a rhabdomyosarcoma and he's been given medicine to shrink it. He's too young to hear that word.

"He could lose his eyesight or part of it. He's only seven, he won't understand that.

"How will he understand how he used to be ok and now he's not? He hates his life. I want him back to normal."

Kerry, who is also mum to Tatum, 14, believes their fast-acting meant the cancer was caught early.

His gruelling chemotherapy treatment is already having a big impact on the tumour, which is dramatically shrinking.

Kerry said: "If I'd left it a few weeks, it could have been a lot worse but the chemo seems to be working and the doctor says he can't believe the progress.

"The lump is shrinking already. We're hoping it'll shrink until it's either minute or until it's gone completely."

River is set to have chemotherapy through a Hickman line for seven months followed by oral chemo and radiotherapy.

The family are waiting to hear whether the tumour will damage his eyesight.

Kerry said: "It's hard to watch him now, he's got no hair and he says he wishes he was normal. I just want him better.

"The cancer can come back, what if it comes back when I'm dead?”

Kerry encouraged other parents to get unusual symptoms checked out, saying: "It's better to be safe than sorry. You should always go and check.

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"People call me a hypochondriac and tell me to stop moaning but if you stop, it could be more serious.”

You can donate to a , raising money for the financial strain of hospital trips as well as to buy gifts for River.

Kerry said River's hair has fallen out due to chemo. But she said: "The lump is shrinking already. We're hoping it'll shrink until it's either minute or until it's gone completely"
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Kerry said River's hair has fallen out due to chemo. But she said: "The lump is shrinking already. We're hoping it'll shrink until it's either minute or until it's gone completely"Credit: Kennedy News
Doctors thought River's eye soreness was caused by either conjunctivitis or hay fever. He is pictured during treatment
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Doctors thought River's eye soreness was caused by either conjunctivitis or hay fever. He is pictured during treatmentCredit: Kennedy News
River had tests done on his eye including a biopsy
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River had tests done on his eye including a biopsyCredit: Kennedy News

What is rhabdomyosarcoma

Rhabdomyosarcoma (RMS) is a type of soft tissue sarcoma that grows in active muscles of the body.

They are extremely rare - about 3,300 new cases are diagnosed each year in the UK.

The most common places for rhabdomyosarcoma are the head, neck, bladder, vagina, arms, legs and trunk of the body.

Very rarely, rhabdomyosarcoma can also be found in other places, such as in the prostate gland, middle ear and bile duct system.

The outlook (prognosis) and treatment decisions depend on the type of rhabdomyosarcoma, where it starts, tumor size and whether the cancer has spread, according to the Mayo Clinic.

Treatment is usually with a combination of surgery, chemotherapy and radiation therapy.

The symptoms of rhabdomyosarcoma depends on where it is located.

But, based on the common places it occurs, symptoms may include:

  • Headache
  • Bulging or swelling of the eyes
  • Bleeding in the nose, throat or ears
  • Trouble urinating and blood in the urine
  • Difficulty with bowel movements
  • A mass or bleeding in the vagina or rectum
  • Swelling or a lump in the arm or leg
  • Pain in the affected area
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