Daughter lost eye to cancer five months after Doncaster mum had breast cancer all clear

Parents Lisa Shaw and Daryl Robson first spotted an unusual white glow in the pupil of Bonnie’s eye on Boxing Day last year.

Lisa said, “We had just had a lovely Christmas day with our family and it was Boxing Day.

"It was around teatime so it was dark outside and the lights were dim in the house so the Christmas lights were twinkling while Bonnie danced about the room.

"As she was dancing and spinning around, I noticed an odd reflection in her eye which looked like a cat’s eye that you would see in the road. I didn’t think much of it but I turned the main light on and asked her to come closer.

"When she came close, I noticed a cloudy film on her eye.”

Typical signs of retinoblastoma include a white glow which may only appear in certain lights or a squint, as well as a change in the appearance of the eye or a swollen eye, although often only one sign or symptom is present.

Lisa added, “As it was Christmas, I thought I would go straight to the opticians on the 28 December.

"When I saw the cloudiness in her eye I was not overly concerned. Bonnie is allergic to animal fur so she has always itched her eyes, so I thought Bonnie had hurt her eye from itching. Regardless of this I thought it was best I get this checked out”.

Lisa explained, “Bonnie was excited to show off her letter skills at the opticians. The optometrist covered her right eye and she read some letters.

“He then covered her left eye. From there I knew something was very wrong.

"Bonnie seemed to panic and she couldn’t focus.

"Her eye was moving up and down, side to side and it was like she could not see anything with her right eye.

"The worry in the optician’s face said it all. He explained we needed an emergency appointment.

"He explained he had not seen this before but he knews what he had seen was very rare. I knew I had to quickly pull myself together and try not to worry Bonnie.”

Bonnie attended Doncaster Royal Infirmary on December 29 for an ultrasound.

Lisa added, “During the appointments at Doncaster, Daryl and I were nervous.

"We try not to use ‘Doctor Google’ but part of me could not help but research into the white glow.

"All the signs pointed to retinoblastoma. I didn’t want to believe it and I didn’t let anyone know what I was reading because part of me was hoping for a different outcome.

"We were asked to come back on the 30th and then on New Year’s Eve. When we were told we need to get an emergency appointment with Sheffield, we knew this was becoming serious”.

Lisa noticed a rapid change in the appearance of Bonnie’s eyes over this period.

Lisa explained “Her eye colour become dull and there was a little puddle of what I could only describe as a milky build up.

"I knew whatever this was it was getting worse and no matter what we found out we needed help. We were devastated and both in shock as the doctor at Sheffield explained it could be retinoblastoma, but we had to fight back tears as Bonnie was in the room with us.”

The family travelled to Birmingham Children’s Hospital on the 12 January.

Lisa said, “Bonnie was excited to go to a big City and stay in a hotel. We made the most of it, but we were hurting inside. Bonnie went to sleep at the hospital and while she was coming round Daryl and I were invited into a room where retinoblastoma was confirmed.”

Lisa said, “Because the cancer was grade E, a unanimous decision had been made by the doctors for her eye to be removed on the 20 January.

"I could not believe that my baby was going to lose her eye. Her eyes are beautiful, how would she manage without her eye?”

Lisa said, “I asked what a prosthetic eye would feel like in Bonnie’s eye; they explained it would just feel like a normal eye and in fact it would feel better than what she is experiencing now.

"Asking questions calmed us down and we came to the conclusion that getting this nasty tumour out of her eye was the most important thing.”

Lisa bought a doctor set to help Bonnie prepare for her operation.

Lisa explained, “I went online and bought a doctor kit which was on a trolley.

"I borrowed a mask that they use to put children to sleep with in the hospital. We got eye patches and everything hospital-themed you could imagine for us to play with. We would explain to Bonnie how we were going to the doctors and then we would play, re-enacting what will happen at the hospital, so she understood.”

Lisa said, “The day of the enucleation is by far the worst day of our lives.

"We were in Birmingham for five nights.

"Due to Covid regulations, I stayed in the hospital through the night and Daryl stayed at the hotel. I don’t know what is worse, being with Bonnie at the appointments or being Daryl and waiting wondering what is going on.

"On the day they took off the eye patch we were so happy to go home.”

After Bonnie’s eye had some time to heal, she started chemotherapy as a precaution. Lisa had experienced chemotherapy herself just a matter of months before.

Lisa explained, “I was diagnosed with breast cancer in October 2020. I was told it would probably be nothing to worry about.

"When I went back from my results, I knew something was wrong.

"When they broke the news to me, I can only describe this as someone knocking the wind out of me. I had a material face mask on, and I nearly breathed it in.”

Lisa said, “After 7 rounds of chemotherapy, I was told I would need a mastectomy.

"I had the operation and recovered well.

"I then had eight lots of radiotherapy. Although this is not nice, I have been very lucky and went through this positively.

"If my daughter was happy, I was happy and as long as I was there to watch her grow up is all that mattered to me.

"I went through this so strongly because of her.

"When my hair fell out, I promised Bonnie this is something to do with mummy’s strong medicine and it is not something that would happen to her. I never thought in a few months’ time my daughter would be facing the same experience at age 5.”

“Bonnie rang the bell as a sign of finishing her treatment on the 23 April 2022 and I rang the bell on the 20 April 2021.

"I would have never imagined we would be doing this and in such a short space of time, but I am proud of us for getting through this so positively. We were determined we would not let this get in our way of living a happy life.”

Bonnie’s family were surprised with a trip to Lapland from their family and friends.

Lisa said, “We could not thank them enough and can’t wait to take Bonnie on this magical trip to see the real Santa this Christmas!”

 Lisa added, “We also want to thank the Childhood Eye Cancer Trust who have been amazing; they’re easy to get hold of, very supportive and always a friendly face. We also received a grant which helped us with expenses.”

“I also want to thank the NHS. One day when Bonnie was struggling with starting her medicine the nurses promised we would do some crafts.

"Bonnie told the nurses it was her hamster’s birthday. They got everyone on the ward involved and all the parents and children were making decorations for a hamster party – Bonnie soon had her medicine!”.

Lisa said, “Bonnie is just the best thing that ever happened to us. I thought I knew what love was until I met Bonnie.

"I look at what she has gone through and see how she is and I could not be prouder.

"When she is older and reads this, I want her to know that all the times I had to hold her tight were done out of pure love and we will protect her forever. I hope she knows how much we love and adore her.”

The Childhood Eye Cancer Trust (CHECT) are urging parents and healthcare professionals to be aware of the most common possible symptoms of eye cancer – a white glow in the eye in flash photo or other certain lighting conditions and a squint.

Richard Ashton, Chief Executive of CHECT said: “Retinoblastoma is rare, with around one baby or young child being diagnosed in the UK each week.

“Symptoms can be quite subtle, and children often seem well in themselves which can make it hard to diagnose. In just under half of all cases, such as in Bonnie’s case, a child must have an eye removed as part of their treatment.”

Richard adds, “We are extremely grateful that Bonnie’s case, her symptoms were recognised, and an urgent referral was made so that she could receive treatment.

"If you are worried that a child you know may have retinoblastoma, please get them seen by a health care professional ASAP. Contact the Childhood Eye Cancer Trust support team at [email protected] and they will provide you with information to take along to your appointment”.

Lisa said, “If you spot a sign, don’t leave it. If for one second you suspect anything make sure you are seen and don’t stop until you get where you need to be.”

For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.