Youngster Khaya Panchal who lost an eye after being diagnosed with a rare form of cancer has been named a Childhood Eye Cancer Trust Champion for her bravery.
Aasma Day talks to Khaya’s family about their pride at how well Khaya is coping with her “special” artificial eye and why they want to warn other parents to look out for signs of the disease.
Tired out after the fun of fairground rides, two-year-old Khaya Panchal slumped exhausted on the sofa for a nap as mum Nisha looked at her with fondness.
As Khaya’s eyes flickered in that moment between wakefulness and slumber, Nisha suddenly spotted an unusual glint in her daughter’s eye.
Nisha, 32, who is married to Ritesh and lives in Ashton, Preston, says: “The sun was on Khaya’s face as she was falling asleep and I saw this strange glint in her eye.
“One of her eyes was normal but the other had a glass marble effect and it looked like a big ring in her eye.
“At first, I was telling Khaya to rub her eye as I thought she had something stuck in it and I tried doing the same, but it wouldn’t go and Khaya then fell asleep.”
Ritesh, 33, who is an IT manager for the Football League, was working in London that day so Nisha waited for him to return home and purposely put Khaya to sleep on the sofa.
Nisha explained to Ritesh what she had seen when he got home and when Khaya opened her eyes, Ritesh quickly took a photograph as she was looking at the flash.
The resulting photograph showed the shining halo in Khaya’s eyes in detail and her perplexed parents immediately googled it and the main thing that came up was cataracts.
The following day, Ritesh took Khaya to the doctors and the GP thought it looked like a cataract and referred Khaya for a hospital appointment.
The doctor told Ritesh that if Khaya’s eye got any worse or turned before the referral came through, to take her to A&E.
Just days later, Nisha noticed Khaya’s eye had moved upwards and she was squinting. She took her to A&E on the Saturday morning and after examining her, the doctor arranged an emergency appointment with the eye specialist for the Tuesday.
Nisha recalls: “I think the doctor must have realised straight away what she was seeing.
“But because they did not admit Khaya, we didn’t realise at this stage that it was something serious.”
Ritesh was working in Portugal at the time so Nisha attended Khaya’s appointment with her mother-in-law oblivious to the bombshell that lay ahead.
Nisha, a hairdresser, says: “The doctors did an eye test on Khaya first and I immediately became concerned as her vision in that eye was not good at all.
“They then put some drops in her eyes to dilate her pupils so they could look at them in detail.
“The eye specialist then came through and told me it wasn’t cataracts and took me into a room.
“My legs turned to jelly, but I never imagined it would be cancer.
“The room I was taken into was full of doctors and I was told that Khaya had a tumour growing in her eye which was cancerous, but they did not know how bad it was.
“I burst into tears and I remember feeling totally numb and holding Khaya really tight.
“I just couldn’t take in what they were saying and could not handle this happening to my child.”
Medics told Nisha Khaya needed an emergency referral to a specialist hospital and gave a choice of London or Birmingham. As Nisha is originally from Birmingham and has family there, she opted for Birmingham Children’s Hospital.
She then faced the ordeal of telling Ritesh the awful news - but found herself unable to tell him over the telephone while he was in Portugal.
Nisha explains: “I told Ritesh it was cataracts and to fly back home as soon as he could.
“When Ritesh came home and asked me how the appointment had gone, I just burst out crying and told him Khaya had a tumour.”
Ritesh remembers: “I felt like I was in the middle of a nightmare.
“There was a huge lump in my throat that I just couldn’t swallow.
“I went straight into Khaya’s room and slept on the floor next to her waiting for her to wake up.”
The family went to Birmingham Children’s Hospital where Khaya had to go under anaesthetic so specialists could see how far the cancer had advanced.
Nisha says: “Khaya was not allowed to eat or drink before the procedure and could not understand why she was not allowed her breakfast or her milk. It was really upsetting to see her like that.
“We had been told that if they found the cancer had not spread too far, they would be able to laser it and treat it there and then.
“However, the specialist was in and out straightaway and asked us to go into a room with him.
“At that point, I thought it must be really bad news and feared we were going to be told we were going to lose our child.”
Doctors told the couple that Khaya had retinoblastoma, a cancer which affects the retina of children predominantly under six years old.
Ritesh says: “They told us Khaya had a growing tumour in her right eye and they only way they could save her life was to remove her eye.
“It had already spread into the nerves and had been caught just in time.
“It was something she was born with and her eyesight gradually went.”
Nisha adds: “We didn’t really have a choice. You either lose your child or they lose their eye.”
A couple of days later, Khaya underwent the surgery which was a success and she was fitted with a prosthetic eye which was later replaced by one to specifically match her original eye.
As the cancer had been caught in time, Khaya did not need chemotherapy or radiotherapy.
Smiling, Ritesh says: “Khaya came out of the hospital that evening with a patch on and was running around as usual and her normal happy self.
“As her parents, we were more distraught than she was.”
Nisha and Ritesh had their second daughter Maya in July this year and say Khaya is absolutely besotted with her baby sister.
Ritesh says: “Khaya loves Maya and keeps giving her kisses and won’t leave her alone.
“She keeps saying she can’t wait for Maya to grow up so she can play with her.”
Nisha says: “Having Maya has really helped Khaya’s confidence and it is nice to know she’ll have her sister to confide in.
“At first we were worried Maya might be affected by retinoblastoma too but doctors have checked her out and she is fine.”
Nisha and Ritesh say they are immensely proud of the way Khaya, who goes to Busy Bees Nursery in Ashton, has coped admirably with her ordeal.
Ritesh says: “Right from day one of her treatment, Khaya has been so brave.
“She has adapted very well to her artificial eye. In fact, she calls it her ‘special’ eye.
“She’s a tough cookie and if you didn’t know what she’s been through then you would be hard pushed to tell there’s been anything wrong with her.”
Khaya, now three, wears her artificial eye and has hospital check-ups every three months to make sure the cancer hasn’t returned.
Nisha says: “We tell Khaya she has a ‘special eye’ because she is a princess.
“Khaya is already starting to ask questions and when Maya was born, she asked why Maya doesn’t have a special eye too or why myself and Ritesh don’t have one.
“We have to take Khaya’s eye out every week to clean it and that is quite difficult.
“That’s when you realise it really did happen and that it is all real.”
Nisha is urging other parents to look out for the signs of retinoblastoma. A classic sign of retinoblastoma is when a child’s pupil reflects white, sometimes seen in photos taken using the flash.
Nisha says: “I only spotted the gleam in Khaya’s eye because the sun was shining right on it as she lay on the sofa.
“When Ritesh took a photo of it, we could clearly see it.
“I want other parents to be aware of it and if they see anything unusual, they should get it checked out.
“If you see any friends’ photos of their children on Facebook and you think their eye looks strange, encourage them to see a doctor.
“Even though you don’t want people to worry needlessly, you could save a child’s life.
“If the cancer is caught early enough, doctors are even able to save the child’s eye as they can treat it by lasering it.”
In recognition of her bravery and selfless behaviour, Khaya has been named a CHECT Champion by the Childhood Eye Cancer Trust (CHECT).
The CHECT Champion Awards aim to recognise the courage, resilience and patience shown by all children affected by retinoblastoma throughout treatment and beyond.
CHECT has three vital missions - to offer one-to-one support for families and individuals affected by retinoblastoma, to raise awareness of the signs and symptoms to prompt earlier diagnosis and to help fund research into the disease.
The CHECT Champion Awards are sponsored by Credit Suisse with each child receiving a medal together with a framed certificate and goody bag.
Joy Felgate, chief executive of CHECT, says: “Every child affected by retinoblastoma faces huge disruption, upset and distressing treatment not to mention follow-on check ups.
“We are delighted to recognise the courage, resilience and resourcefulness shown by Khaya throughout her treatment and beyond.
“She really is a thoroughly deserving champion.”
Ritesh says: “We are so proud of Khaya. Having something like this happen to your child is every parent’s worst nightmare but Khaya has made it easier on us because of her courage and bravery.
“There will be more challenges along the way - we know that - as she grows up and wants to know more about exactly what happened to her.
“It’s one step at a time, but at the moment she is doing better than we could ever have expected.”