Glasgow Caledonian University (UK) Psychology student raising awareness of Retinoblastoma after stepdaughter diagnosis

Almost exactly a year ago, a GCU student’s world was turned upside down when her stepdaughter was diagnosed with a rare type of eye cancer.

Now, Applied Psychology student Megan Black is celebrating the strength of two-year-old Freya and the charity that supported her with an all-day fundraiser at Irvine Water Sports Club on Sunday 11th December.

We caught up with Megan to hear about everything from Freya’s diagnosis, through to how students and staff at GCU can help make a difference to other young people affected by Retinoblastoma.

Background

“One day we were in my mother-in-law’s house, and we were playing with Freya and her twin brother. We noticed her eye moved a certain way and her dad saw it appeared white and almost see-through – we could actually see all the way to the artery at the back of the eye. We realised that something wasn’t right. Freya’s Mum agreed and her and my partner went to the doctors with Freya where she was referred on to the opticians. They really didn’t know what they were dealing with, and it was then decided she would be transferred to Glasgow Royal Infirmary.

“They identified that it could have been a type of cancer and told us to prepare for ‘sinister news’, but they didn’t have the capacity or facilities to diagnose and treat.”

Signs and symptoms

“We found out that we’d have to go down south for more information. Once we got to Birmingham, they told us that she’d lost sight in her eye over the last few months due to Retinoblastoma, a rare type of eye cancer. It came as a real shock because we had no warning signs and simply weren’t aware of it. She was never in any pain and there were absolutely no indicators.

“I’d never heard anything about Retinoblastoma before and I think it became really obvious how unknown it is.

“We had previously taken Freya repeatedly to the health visitor and other professionals about her having a lazy eye, but we were just told it would go away with time. We were concerned about it, but never in a million years would we have thought it was cancer.

“It’s a type of cancer that not many people know about it, but it mainly happens with kids between the age of zero and five.

“The lazy eye is a symptom, as well as blindness but obviously not all kids can come out and say that they can’t see. Sometimes the eye can shake as well, but we never had that with Freya. For her, it was more the whiteness under certain artificial lights, but in other people it can be quite prominent. It’s scary to think that there might not be any other symptoms.”

Chemotherapy 

“There are two different types of chemo that they could offer at Birmingham: the standard one which everyone knows about, but that comes with risks like hair loss and low immune system.

“We opted for the other option, called Intra-Arterial Chemotherapy (IAC). She gets something put in her leg and the chemo goes straight to her eye. It means there aren’t as many side effects, which was obviously a big thing.

“She’s been undergoing that every second week for the last year. Because of where the tumour is, they’re never going to be able to fully kill it. The only way they’d be able to do that is by removing the eye, but even doing that could mean there were still tumour cells around it. If the eye is removed, then they can’t do the Intra-arterial chemotherapy.”

Freya

They’ve now stopped the chemo because it’s no longer growing and now, they’re just attacking it with a laser. Freya actually just came back from Birmingham last week and the news is that they’re hopeful she’ll only need two more rounds of laser and then they’ll just be monitoring it every four weeks. Should she not need any further interventions over the next year, she’ll get to ring the bell.”

Freya’s actually doing really well. She’s absolutely taken it in her stride. They had said originally it could be five or six years, so for us to be sitting here now a year after first discovering it is a massive relief. I think it goes to show what medical professionals are capable of. We’re so grateful to all the staff in Birmingham for acting so quickly.”

Childhood Eye Cancer Trust

“We wouldn’t be where we are without the Childhood Eye Cancer Trust (CHECT). They are completely funded by donations and are the only charity in the UK that focus on Retinoblastoma.

“We had about six or seven charities reach out to us in the first initial weeks, but CHECT stood out because they are the only one doing research and focusing solely on Retinoblastoma.

“They’ve been incredible for us. They organised our train tickets and hotel down in Birmingham, and they provide on-site support as well while Freya’s receiving her treatment.

“During the chemotherapy, Freya is put under local anaesthetic through a mask. She was becoming unsettled every time she saw the mask, so the charity contacted every hospital in London to see if there was anything they could do to make it easier. They eventually sourced a flavour to put in the local anaesthetic and it has really helped calm her down.

“The journey to Birmingham is around four hours by train, which is obviously quite a while for someone of Freya’s age. The charity bought her an iPad to keep her entertained and phoned me last week asking what colour she would want it to be. We’re unbelievably grateful for all that they’ve done.”

Giving back – fundraiser

“My partner and I were chatting one night about how much the charity had helped us and how difficult it must be for them as an organisation to raise funds, especially given the lack of public knowledge around Retinoblastoma. We knew we had to do something to show our gratitude and we also wanted an opportunity to celebrate the strength of Freya with how far she’s come.

“We’re going to be hosting a full day event on Sunday 11th December – we don’t do things by halves. It’s going to be hectic but very fun! We’ll be aiming it at kids between 1pm and 5pm; we’ve got a Santa’s Grotto, bouncy castle, face painters, as well as lots more games and prizes.

“From 5pm onwards, we’re aiming it more at adults – that’s when the bar opens! My partner’s really into his music and got in touch with local bands from around Ayrshire to come and perform. It’ll be a really nice atmosphere.”

“We’ve sold about 60 tickets so far. Raffle tickets are also flying off the shelves – we’ve got some great prizes. It’s looking like it will be a really good day!”

“For those that can’t make it along, there’s a QR code in the poster (above) that allows you to donate. Any support at all would be massively appreciated.”