“I expected the doctor to say that I was another worried over-bearing mother, panicking over nothing” – the words of a mother who found out the devastating news that her baby boy had cancer.
Eight-month-old Husayn was standing and leaping over the sofa arm in the living room one afternoon when his mother Parveen noticed a strange glow in one of his eyes.
Parveen Rizwan from Birmingham said: “At first I thought nothing of it. I thought it was a combination of the sun shining in through the window and the glow from the TV. It was only when my husband also mentioned seeing something in his eye a couple of days later that we knew something could be wrong.”
Her husband Rizwan Googled the symptoms and retinoblastoma, a rare childhood eye cancer which affects just one child in the UK per week, came up as a possibility.
Parveen said: “To be honest, even at that point, we really thought it wouldn’t turn out to be anything serious. However, for peace of mind, we thought we would mention it at the GP appointment we had coming up in a couple of weeks.”
Husayn’s eyes were examined by their GP, who stated that she needed to make an urgent referral, knowing that the symptoms could indicate retinoblastoma.
The following day at the Birmingham Midland Eye Centre, a specialist confirmed that Husayn had very little, if any, vision in his right eye.
Parveen said: “We were obviously shocked – we had no reason to suspect that he had any problems with his vision – he seemed like a normal baby, playing and doing normal baby things. He never missed a thing, picked everything he wanted and held anything given to him. Even his pincer grips were spot on. Little did we know that he’d already adapted to life with vision in just one eye.”
Husayn was seen at Birmingham Children’s Hospital two days later for further intensive tests under general anaesthetic. It was there that they confirmed Husayn’s devastating cancer diagnosis in both of his eyes, leaving him with just 10% vision in his most affected eye.
Parveen said: “I just broke down. Holding on to my husband so tightly, who was trying so hard to be strong for both of us, we listened as the diagnosis of retinoblastoma was relayed to us.
“Tears rolled down my cheeks. It seemed so surreal. How could this be true? When you can’t see something physically wrong, and they seem fine in themselves, you can’t accept that your little baby is sick. ‘When?’, ‘How?’, ‘Why?’ were just some of the questions which flooded my mind at the time, but ‘Will my child be ok?’ was the only question which needed to be answered.
“Although Rizwan had been so strong up until now, he broke down when he saw Husayn in the recovery room, still groggy from the anaesthetic. I never have seen my husband cry since his mother died three years ago. This broke our hearts immensely. I still can’t come to terms with it. Even now, it doesn’t feel real.”
Thankfully, there was a chance that both of Husayn’s eyes could still be saved. His left eye had laser treatment straight away. However, an intensive course of chemo of was required to shrink the tumours in his right eye.
Thanks to a combination of patching to improve the sight in his weaker eye and a good response to chemo, Parveen says that Husayn’s sight in his poorly eye has vastly improved – amazingly by 70% a few months ago and he now has equal vision in both eyes.
Having finished his chemo, now 20 month old Husayn has ongoing laser treatment every three-four weeks.
“He’s on the edge of the cancer now. Throughout everything he’s been our strong little fighter – he still comes up fighting and definitely shows us he is boss. I’m absolutely over the moon. For the success of treatment and the care provided by all the staff involved in Husyan’s treatment and aftercare at Birmingham Children’s Hospital. They are tremendous. We can’t thank them enough. Absolutely wonderful team – thank you so much.”
Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust, said: “Retinoblastoma is rare, with around 50 cases diagnosed in the UK each year. In addition to this, the symptoms are very subtle and children often seem well in themselves which makes it hard to diagnose.
“Currently half of babies and children diagnosed lose an eye to save their life. Urgent referral and early diagnosis can help save a child’s sight, eyes and life.
“12-18 May is World Retinoblastoma Awareness Week and we are urging all parents to be aware of the symptoms and to have their child checked out if they have any concerns at all – the most common signs are a white glow in the eye which visible in certain lighting or a flash photo, or a squint (lazy eye).”
NOTES TO EDITORS
1. The Childhood Eye Cancer Trust (CHECT) is a UK charity dedicated to helping people affected by retinoblastoma. It:
• Provides ongoing support and information to families and individuals.
• Funds research into the prevention and treatment of retinoblastoma.
• Raises awareness among health professionals and the public.
• Influences policy to improve services for patients.
2. Retinoblastoma is a rare and aggressive form of eye cancer that affects babies and young children, mainly under the age of six. On average, around round 40-50 cases are diagnosed a year in the UK – or one child a week. It represents 3% of all childhood cancers and 10% of cancers in babies under the age of one in the UK.
3. Around 98% of children survive retinoblastoma in the UK but early diagnosis is crucial in order to save a child’s eyes, sight and life. The most common symptoms are a white glow in a child’s eye or pupil in dim lighting or when a photo is taken using a flash, and a squint.
4. CHECT has been a registered charity since 1987 and was formerly known as the Retinoblastoma Society.
5. For more information on CHECT or retinoblastoma (also known as Rb), including signs and symptoms, diagnosis, the red reflex test and treatment options, visit www.chect.org.uk.