International Childhood Cancer Day: Daya’s story

Twin sisters Daya and Jasmine were born prematurely at 32 weeks. Due to complications, their mum Pamela didn’t get to meet and hold them until nine days later.

Shortly afterwards, the family found out Jasmine was profoundly deaf. She currently has bilateral cochlear implants and multiple complexities, which she has worked hard to overcome. She was diagnosed with a rare condition under the 100,000 genomes project via the GOSH genetics team.

In 2017, not long before Jasmine was due to have her cochlear implants fitted at a local hospital, Pamela noticed a lump in Daya’s abdomen.

Following scans at their local hospital, Daya was rushed to GOSH with a suspected tumour.

At GOSH an on-call oncologist looked after Daya, who underwent lots of tests and was fitted with a Hickman line.

She was diagnosed with stage four metastatic neuroblastoma, an aggressive cancer that had spread around her body.

Neuroblastoma is a rare cancer that generally affects children under five years old. The severity of it can vary hugely between individuals, and in some children can be very difficult to treat.

The five-year survival rate for neuroblastoma is one of the lowest of all childhood cancers.

From there on, an intensive treatment regime started for Daya – with her care shared between GOSH and the family’s local hospital.

During treatment, which lasted two and a half years, Daya spent a lot of time in isolation at GOSH and the family got to know various hospital teams and formed closed bonds with them.

“When your child is an oncology patient, you travel through so many teams and departments. And when they say it takes a whole village to raise a child, GOSH and our local hospital were our village," says Pamela.

“We have engaged with almost every single department you can think of. We have met some wonderfully invested people. It makes you feel safe at a time when you feel your most vulnerable.”

In 2018 Daya underwent lifesaving surgery in New York to remove the primary tumour, which was in a highly dangerous position in her body – wrapped around her main arteries. The surgery lasted a total of 12-and-a-half-hours.

GOSH staff were supportive during this time, helping the family to organise all of the paperwork needed, ready for the hospital in New York.

The first person that Pamela called following the operation was their consultant at GOSH, to give him the good news that the operation had gone well and they had got 100% of the tumour out.

Upon arriving back in the UK, Daya continued to undergo treatment – including immunotherapy and radiotherapy.

After a total of two and a half years of treatment, on January 1 2020 Daya’s family announced that she was in remission.

Thankfully, Daya remains in remission.

Along with Jasmine, she continues to visit GOSH – albeit for different reasons. They are currently both doing well and will turn five this September and start school.

“We are thankful to all the wonderful teams who have touched our lives and work tirelessly every day to save lives,” Pamela says.

Pamela and the girls continue to raise awareness about neuroblastoma and childhood cancer. The family continue to support other families affected by the disease, as well as raise money for GOSH Charity, Solving Kids Cancer and other charities.

• Try to focus in on what you are feeling. Acknowledge your own feelings, work out what they are. Label them and move on.
• Be proactive in changing a difficult situation. Change what you can and enjoy the rest. Easier said than done. You never cry or laugh for more than a few moments. Moments pass. There’s always another opportunity to try and feel something good or fun or find some joy in the day.
• It’s hard in the early days. You have to get through it. Try to not let your inner voice beat yourself down. Don’t let anxiety, anger, frustration eat you up inside. Talk, write, run...whatever your outlet, make it positive and carry on.
• It’s ok to cry. You’re not weak. You’re just sad or tired, very tired. Everything is much harder when you’re tired. Sleep when you can for as long as you can. I survived on 2-3 hours sleep a night for months on end. It was awful.
• Don’t be too hard on yourself. No one cares if you’ve worn the same jeans for three days in a row or if your house isn’t tidy. If your children are happy and clean, even if you’re not, you’re winning!
• Be grateful for as much as you can and as often as you can.
• A good friend once said to me, ‘let your hope be greater than your fear’. I hope it gives someone solace.

• Get organised. If you need to rush out often, have a grab bag at the door with all your supplies. Keep it stocked up when you return.
• Get a notebook. In the early days things are a blur and shocking news takes time to process. The notebook is a good place to write down important numbers, questions, answers, to do lists, etc.

• Play. Play as much as you can - this is what makes the memories and builds the connection. You are still their parent and you’re having to battle through so much and hide so much. Play. It makes you laugh, it brings hope, it brings you together, it passes the time, it beats boredom and it’s what children are designed to do. It keeps you in the moment.

You can find Pamela's own, personal blog here: https://mythreelittlebears.wordpress.com/