The magic of Christmas at GOSH: Meet Emmie
25 Oct 2023, 6:17 p.m.
Emmie spent her first ever Christmas in hospital after being diagnosed with a malignant rhabdoid tumour, a rare and aggressive type of cancer that forms in the kidneys.
Thanks to the treatment she received at GOSH, she can now enjoy the festive season at home with her family.
Here, Emmie’s mum, Lindsay, recounts their GOSH journey.
Four-year-old Emmie was just 14 weeks old when her parents, Lindsay and Andy, were told she had cancer.
It was September 2019, and Lindsay had taken Emmie to A&E at their local hospital after noticing blood in her nappy.
“Within a few hours we were told she had cancer,” Lindsay says. “When we woke up that morning, that was not how we saw the day going. Our lives changed in the space of a few hours.”
The family were transferred to GOSH the following day. Specialists at the hospital told them the cancer had spread to Emmie’s lungs and liver, and that she had a 10% chance of survival.
There were two options: they could take Emmie home and enjoy what little time she had left or get her started on treatment straightaway.
“We decided that we had to give her the chance, so she began chemotherapy the following day,” Lindsay explains.
“You just don’t ever think your baby will have cancer. Trying to get our heads around that, and everything that came with it, was so overwhelming.”
Early days at GOSH
Emmie was initially treated at GOSH for almost three weeks.
She began a chemotherapy protocol known as VDC/IE. This treatment alternates between a combination of drugs which doctors hoped would shrink the tumour.
“We were told that it would respond to treatment well in the beginning, but it could stop working very quickly. We had to just wait and see,” Lindsay says.
“This went on for eight cycles. After the first three cycles, Emmie had a repeat MRI scan which showed that the size of the tumour had significantly reduced.
“This meant she could have her kidney removed, which was where her main tumour was. She had this surgery in November, aged five months.”
During this time, the GOSH Charity-funded Chaplaincy team was source of comfort for Lindsay and her family.
"Dorothy from the team christened Emmie, which was lovely. We’re not particularly religious, but she was a friendly face. Services you wouldn't even think of crop up when you least expect them.”
"It really was the best Christmas"
Emmie recovered from surgery quickly. The next stage of treatment was a stem cell harvest. To do this, her chemotherapy routine needed to be altered, which meant the family were at GOSH on Christmas Day.
Spending the festive season in hospital can be daunting. That’s why the teams at GOSH do their best to bring the magic of Christmas onto the wards, making it feel like a home from home for children like Emmie and their families.
“At first, the prospect of staying at GOSH over Christmas was very difficult to deal with,” Lindsay says.
“We thought it might be our only Christmas with Emmie and didn’t envisage spending it in hospital. But it really was the best Christmas. We had such a wonderful day.”
The family spent the day on Elephant Ward. Emmie’s brother, George, received a sack of presents for himself.
“He was entertained all day by a magician, Peter Rabbit, fairies, singers and Santa,” Lindsay recalls.
“We even had a free lunch! The food was flowing, and the nurses were wonderful. It was a truly special day, all things considered.
“George was two at this point, so he had a bit of understanding about Christmas. Emmie was too young. But we pretended there were two Christmas Days when she came out of hospital. We had our own fake Christmas.”
Emmie had her stem cell harvest in January 2020. By February, she was ready to start high dose chemotherapy.
But she deteriorated very quickly, and it became a race against time to get the stem cells back into her body.
As Emmie had been bedbound, she needed lots of intensive physiotherapy. She was also fed by total parenteral nutrition, meaning she was given nutrients by infusion.
“She was very sick, but she recovered. It was like starting all over again, as if someone had pressed the reset button.”
Due to side effects from the chemotherapy, Emmie was diagnosed with liver disease and other complications.
“She was like a maths problem that needed to be solved,” Lindsay explains. “Every time the clinical team tried something new, something else would go wrong.
“Eventually, we were able to get her back on track and could think about going home.”
After returning home, the family spent a year visiting the hospital for maintenance chemotherapy. Emmie was given an oral dose at home each day, then came to GOSH every two weeks for infusions.
A milestone moment
Emmie rang the end of treatment bell in May 2021, the day after her second birthday.
It was a joyful moment attended by those who had been involved in her treatment. This included her consultant, nurses from Elephant Ward, members of the Play team and physiotherapists.
“It was the most perfect celebration,” Lindsay says. “We loved watching other children ring the bell when we were inpatients and had dreams about the day when Emmie could do the same.
“She basked in the attention, rang it approximately 50 times, and danced every time!
“The staff at GOSH are the most amazing people. They saved our lives, as well as Emmie’s. The Play team is wonderful. They brought her toys and took her to sensory rooms during our initial stay.”
The Play team, which is fully funded by GOSH Charity, distracted Emmie when she had her line removed.
George also benefitted from his interactions with them. “He still talks about going to the hospital and gets really excited about seeing them. I think that’s what GOSH provides, a shared experience of community and family.”
To help others, Emmie’s family consented to the use of her data in GOSH research projects.
“We live in the hope that at least one child may benefit,” says Lindsay.
“Supporting the work of GOSH Charity is vital in helping to continue research into rare and aggressive cancers. No parent should be told that their baby is going to die.”
Lindsay and her family also recently started an organisation called Emmie’s Books, which provides books for children at GOSH.
“We’d love to help other families,” she says. “It’s early days but we’re excited to see where it goes.”
Home for Christmas
Now, Emmie visits GOSH every three months. She alternates between an ultrasound and an MRI scan.
Thanks to the dedicated teams at the hospital, she can be at home for Christmas, which is something the family never thought possible.
It hasn’t been a straightforward recovery. They had a scare when a routine scan showed some lesions on Emmie’s liver. Thankfully, the biopsy came back as an inflammation and further testing showed there was no evidence of a relapse.
“She’s a bundle of energy and loves singing and dancing,” Lindsay says. “She stayed in Elephant Ward for a night recently, and she brought her microphone to sing for everybody.
“She’s a massive Mamma Mia fan – I don’t know how that happened! She knows the films from beginning to end."
Because Emmie spent so much time in hospital, the family had to teach her how to sit, crawl, walk and eat again. But she’s developing well.
Lindsay says they encourage her to lead as normal a life as possible, without forgetting everything she’s been through.
“Emmie has scars that will tell stories later in life. She now wears hearing aids, as the damage from chemotherapy has given her profound high-pitch hearing loss in both ears.
“Apart from that, you’d never know what she’s been through.
“We know that the future is going to be uncertain, especially given the nature of Emmie’s diagnosis. The fact that she has a future is because of GOSH. Life is precious, and we must live our lives and make the most of things.”
Emmie's Christmas cards for the GOSH Shop
Emmie loves to get creative, and she is the inspiration behind GOSH Charity’s 2023 Christmas cards.
Emmie’s Christmas bunnies represent the tight-knit bond she has with her big brother, George, and little sister, Molly. They were there with her when she rang her end of treatment bell.
Each bunny has been reshaped from pastel finger paints and purple thumb prints that she made at home with her family.
The cards are available to buy in the GOSH Shop.
Help celebrate 25 years of our Christmas Stocking Appeal!
Support more children like Emmie by donating to our appeal and sending your own special Christmas stocking message to the children and families at GOSH.
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