A BRAVE Sunderland baby diagnosed with cancer in both her eyes, has received a prestigious national award, as encouraging new scans reveal her treatment is starting to work.
Denvah Finlay, 1, was diagnosed with retinoblastoma – a type of eye cancer that starts in the retina, in November, just two weeks after her first birthday.
For the courage she has showed since her diagnosis, Denvah has received a Cancer Research UK for Children & Young People Star Award and the family are hopeful they will be able to celebrate Christmas at home in between hospital appointments.
Every child nominated receives the accolade, which is backed by a host of famous faces, including children’s poet and author Joseph Coelho and children’s TV favourite Mister Maker.
There is no judging panel because the charity believes every child diagnosed with cancer deserves special recognition. The awards are open to all under 18s who live in the UK and have been treated for the disease within the past five years.
As well as a star-shaped trophy, Denvah also received a £50 TK Maxx gift card, t-shirt and a certificate signed by the celebrities. Her brothers Maverick, 3, Davis, 15, and Strand, 17, received a certificate too.
Denvah, from Hetton-le-Hole, was diagnosed with retinoblastoma after her parents Gemma, 42, and Paul, 45, noticed she had started squinting.
Gemma took her to the GP in August, but the doctor couldn’t see anything of concern. Despite this, she asked for Denvah to be referred to the eye infirmary, conscious that two of her older children needed glasses.
Denvah was given an appointment at Sunderland Eye Infirmary on 10 November, but no one could have imagined what was to come.
Gemma, who is a health and wellbeing practitioner, said:
“Our day started as normal. My husband Paul went to work, the kids went to college, school and childcare and Denvah and I headed to the appointment. I expected we’d be in and out with some drops or perhaps an eye patch.
“But while I was there the doctors told me they’d seen tumours on both of Denvah’s eyes, and she would need to start treatment immediately. Life as we knew it stopped and everything changed in that moment. I couldn’t believe what I was hearing.”
On 14 November Gemma and Paul made the four hour journey with Denvah to Birmingham Children’s Hospital, which is one of two specialist retinoblastoma centres in the UK.
Gemma said:
“The consultants found Denvah’s right eye was a mass of tumours and that she was already completely blind in that eye as the tumours had detached the retina. They also found her left eye had a number of tumours, but there was hope to treat that eye.”
Denvah had a general anaesthetic as doctors performed a lumber puncture, a bone marrow biopsy and an MRI scan, to assess the extent of the cancer and determined if the cancer had spread.
Gemma said:
“Fortunately the results show that the cancer is contained to her eyes, so we are so grateful for that. But sadly, the tests did show that the cancer has been caused by a change in the retinoblastoma gene, meaning if Denvah goes on to have children they are 90% likely to also have retinoblastoma.
“This is a huge weight to carry and we know that even when she gets through her treatment, we will always wonder what the future holds for her and having a family.”
In Birmingham Denvah began laser therapy, which uses a thin beam of light to destroy the tissue it’s directed at, and cryotherapy, which uses extreme cold to destroy cancer cells.
The family will now need to travel every month to Birmingham for that treatment and her checkups with her medical team.
Another part of her treatment plan includes chemotherapy at the RVI in Newcastle. She has completed two out of six rounds so far.
Gemma said:
“It has been such a whirlwind since she got diagnosed in November, and we haven’t had chance to come up for breath yet. With Christmas round the corner, it feels like such a lot to sort to make sure Denvah and all the kids can have a special time together.
“I almost didn’t put up the tree, but then I thought this might be the last time Denvah is able to actually see it if she loses all her vision, so I’ve made sure we’ve gone ahead with as many plans as we can.”
The family have just completed three back-to-back days in hospital in Birmingham and in Newcastle, but Denvah’s latest scan results have given the family something to be hopeful for.
Gemma said:
“The treatment days are extremely hard for Denvah. We have a four-hour trip to Birmingham and then two days in the hospital. We have decided to take our three-year-old son Maverick with us, as it was going to be another worry for us having to leave him at home.
“As challenging as it is to have two children in the hospital, it’s proving to be a great distraction for Denvah and first thing she says when she wakes up from the general anaesthetic is ‘brother’, as she’s looking for him.
“This week we came back from Birmingham and were straight into the RVI for her second round of chemotherapy. It’s really hard and she’s exhausted, but coping incredibly well.
“Despite how hard the treatment is, we got some glimmers of hope this week, as her latest scans show the tumours in her left eye, are shrinking, meaning that the treatment is starting to take effect. We’ve already noticed a difference in her vision and she’s been able to focus on things a bit more. We couldn’t wish for anything more going into Christmas.”
To recongise her daughter’s bravery, Gemma nominated Denvah for the Cancer Research UK for Children & Young People Star Awards, and hopes that by continuing to share their story it will raise awareness of retinoblastoma, and how vital research is to treat it.
Gemma said:
“I put Denvah forward for the award, not only to celebrate her but to give us all something to celebrate and focus on at such a difficult time. It still hasn’t sunk in what’s happening to her and the impact it is having on our family is huge. But for now we’re taking one day at a time and this award is a lovely thing to celebrate and enjoy. I will make sure Denvah’s diagnosis and ordeal isn’t in vain, and we’ll do all we can to help others from out experience.
“I’m so proud of Denvah, and her three brothers. Although my two older boys are teenagers, they’re all still my babies and it hurts me that they’re having to experience this too. But I couldn’t be prouder of them and how they are handling everything that is being thrown at them with such courage.”
Each year in the UK around 40 children are diagnosed with retinoblastoma.
Thanks in part to Cancer Research UK’s work, 99% of children in the UK with retinoblastoma survive for at least five years. Retinoblastoma has the highest survival of any children’s cancer in the UK and new discoveries and breakthroughs are leading to more effective and less toxic treatments.
Cancer Research UK is the biggest charitable funder of research into children’s and young people’s cancers in the UK. The vast majority of children diagnosed with retinoblastoma now survive. Cancer Research UK has been at the heart of this success, as its researchers developed a test for a faulty gene for children with a family history of the disease, meaning they get treatment early when it’s more likely.
Thanks to vital work like this, children’s cancer survival in the UK has more than doubled since the 1970s.
The Star Awards help shine a light on the unique challenges still faced by children like Denvah.
Now that Denvah has completed her second round of chemotherapy, Gemma and Paul are hoping her blood levels will remain stable, so that the family can spend Christmas at home together.
Cancer Research UK spokesperson for the North East, Lisa Millett, said:
“We’re committed to driving forward progress to ensure more children and young people can live longer, better lives, free from the fear of cancer. After everything Denvah has been through so far, it’s an absolute privilege to celebrate her incredible courage with a Star Award.
“A cancer diagnosis is heart-breaking at any age, but it can be particularly difficult for youngsters – especially when many may experience life-long side effects from their treatment. That’s why we’re funding dedicated research to find new and better ways to beat this devastating disease.
“The Star Awards are a wonderful way to give these extraordinary children the special recognition they truly deserve, so we hope people in will get nominating now.”
Nominate a child or young person for a Star Award at cruk.org/starawards
