Christmas at GOSH: Lily's story
5 Dec 2019, 3:55 p.m.
Lily, who features in The Sun’s Quids for Kids Appeal, was treated at Great Ormond Street Hospital (GOSH) for a type of cancer called acute myeloid leukaemia. We caught up with Lily's mum, Sam and one of Lily's Play Specialists, Lizzie Penn, to learn more about Lily's experience at GOSH.
"It was early February 2018 and Lily woke up with a bit of a sore leg," begins Lily's mum, Sam. "She was in a lot of pain, which worsened throughout the week. After blood tests at our local hospital, our GP called us and said 'I don’t want to alarm you, but you need to go straight to the hospital. They are waiting for you to arrive; Lily’s blood results aren’t good.’
“About an hour after we arrived at the hospital, we were pulled out of the room and told by a doctor that they thought Lily had leukaemia. That was the first that we’d heard of it and we were in absolute shock. We were told leukaemia required specialist treatment, that GOSH would take over her care, and that we would likely go to GOSH after the weekend. An hour later we found out something else had shown up on the test results which meant we needed to go to GOSH immediately.
“We were blue-lighted to London in an emergency ambulance, very distressed and scared. But as soon as we arrived, the staff took control and took care of us all. We were admitted to Giraffe Ward, and the nurses were superb. They had a really caring approach.”
Support from the Play team
“Lily is a very sensitive child and because of all the needles and the blood tests through her treatment she developed a phobia of them. The play team have been excellent at preparing Lily using activities like drawing and practising procedures on toys before she has procedures, so she knows what to expect.
“We were very thankful to have Play Specialists come and spend time with Lily, doing crafts like making unicorn cupcakes, and giving us parents a much-needed break."
Play Specialist Lizzie Penn has fond memories of Lily:
"Lily is one of the most positive little bundle of joy that I’ve had the privilege to meet in difficult circumstances," says Lizzie. "Straight away, you’d walk into her room and be greeted with this big, beautiful smile. From the beginning, she wanted to include us, to make friends. Her imagination is off the scale, too! Soon enough, we were travelling through different places all over the world.
"Her family were incredibly supportive and perceptive. They were able to help me understand where Lily was with the whole thing, and how the Play Team could help."
The Play team are able to support patients, siblings and families come to terms with the patient's diagnosis.
"The first steps the Play team usually takes is to find out what level a child is at with their diagnosis. What do they already know or understand? Have they got anyone in their family who might've experienced something similar? For example, they might have a grandma or aunt who has had cancer. So we talk about similarities and differences.
"We also encourage patients to own their diagnosis. To make it their own. By drawing pictures, writing a diary, being creative, they can visualise their treatment and make it personal. Lily drew pictures of what she thought her cancer looked like, and how we were going to get rid of it - how we were going to zap it! Patients can also use their own words to describe their condition and medications. Lily had penguin milk!"
Christmas at GOSH
"Lily enjoyed Christmas time at GOSH. She decorated her room beautifully and got involved in all the activities. At GOSH, we want each young person like Lily to live their lives and not miss out on milestones and the every day fun-and-games that other children experience. Christmas is no exception!
"The Play team help to make Christmas a magical time at GOSH. We are on hand to get everything ready. We decorate the wards and facilitate all the lovely things that happen, like parties, celebrity visits – we make sure that children can do as much as possible. We also make sure that Father Christmas is aware of which children are staying in over Christmas, so nobody gets missed out, and brothers and sisters don’t get missed either! We work very closely with Mrs Clause, the brains behind the whole operation!"
Ringing the end of treatment bell
"Watching Lily ring her end of treatment bell was amazing. You could see her personality shine through. She was jumping up and down with her arms in the air - her joy made us all know that she understood what had happened. She had climbed the tallest mountain in the world - she'd made it. Everyone had tears in their eyes.
"I know that people say this a lot, and I don't want to say it lightly, but she's inspirational. You look at her, and she has a lust for life in her eyes. She has got an energy that makes you want to live your life - to live like Lily."
You can read more about Lily's story on the GOSH Charity website
The Power of Play
Great Ormond Street Hospital’s expert Play team knows play can help children cope with whatever life throws at them. They've teamed up with GOSH Charity to share expert play tips and resources with parents across the UK.
Gene therapy offers hope to children with rare and fatal brain diseases
Scientists and doctors at UCL GOS ICH and GOSH have given hope of a gene therapy cure to children with a rare degenerative brain disorder called Dopamine Transporter Deficiency Syndrome (DTDS)
50th patient treated with thymus transplant at GOSH
The 50th patient was treated at Great Ormond Street Hospital for Children last month with a pioneering treatment to transplant otherwise-discarded thymus tissue into very young children who lack a working thymus.
GOSH Charity Launches Families Appeal
Great Ormond Street Hospital Children’s Charity (GOSH Charity) has recently launched the Families Appeal - a new campaign to support children and families that come to GOSH every day.