"My little miracle" - mum says clinical trial saved her baby girl

Sammie Smith from Kidderminster had to watch as her baby girl Wendie-Lou was rushed to intensive care several times after she was diagnosed with Acute Myeloid Leukaemia (AML) in October 2022.

The heart-wrenching diagnosis came just 12 months after Sammie lost her sister Megan Smith to bowel cancer, aged 27.

Little Wendie Lou was so poorly - Sammie was told her best chance would be to sign her up for a clinical trial funded by Cancer Research UK.

The treatment - which involved adding a new, targeted therapy drug to standard chemotherapy at Birmingham Children’s Hospital - meant that Wendie-Lou was able to recover enough to receive a life-saving stem cell transplant.

Now Sammie is backing Cancer Research UK’s Childhood Cancer Awareness Month campaign to help more youngsters survive cancer.

“Without that trial, I don’t believe Wendie-Lou would be here now,” said Sammie, who is doing a psychology degree in a bid to help other families cope with difficult circumstances. “She’s my little miracle so it means everything to me to be able to support this campaign.”

After taking Wendie-Lou to hospital with a rash that developed into bumps on her skin, Sammie says she was in shock when her worst fears were confirmed.

“It was the worst time of my life,” recalled Sammie. “At first my worries were put down to anxiety because my sister had just died of cancer but eventually, test results showed Wendie Lou had AML.

“The cancer was so aggressive that the treatment plan was about prolonging her life so when they offered us the trial we felt like it was our only hope.”

Wendie-Lou was enrolled on the ‘MyeChild 01’ trial looking at whether more children survive if another targeted drug, called gemtuzumab ozogamicin (or Mylotarg), is given alongside chemotherapy.

In order to find the most effective dose, children were randomised to get either one, two or three doses of the drug which locks onto a protein on the surface of leukaemia cells and releases a tiny dose of chemotherapy directly into the cell.

Wendie-Lou was picked at random to receive three doses which the study has subsequently shown to have had the most promising results.

“The treatment was so tough on her little body she ended up in intensive care several times and I remember having to call my family at one point because it was touch and go,” added Sammie. “I would have done anything to take it away, but she was amazing and bounced back every time.”

After receiving the trial drug, Sammie had to spend three months with her daughter in Glasgow while she underwent her stem cell transplant at the Royal Hospital for Children between January and March 2023.

Now aged three, Wendie-Lou is a bundle of energy who enjoys singing, dancing and playing with friends at nursery.

“We were told to expect developmental delays but, so far, she’s thriving,” added Sammie. “She’s so clever, she can sit by herself and do a 36-piece jigsaw and she’s incredibly sociable and funny. She loves to sing and dance and only has to listen to a song once and she can remember all the words.

“It’s really heartening to see her return to a normal life, filled with joy and the activities she loves. I’m so grateful for the research that saved her life and so hopeful for the future that I want to do whatever I can to help other families like ours.”

Prof Brenda Gibson, chief investigator of the MyeChild 01 study, said: “I’m really pleased to hear how well Wendie-Lou is doing. This trial has produced excellent results. Patients who presented with poor risk features and received three doses of gemtuzumab ozogamicin have done particularly well.”

Sammie is urging people to help drive more progress by donating or picking up a gold ribbon badge – the symbol of childhood cancer awareness – available from Cancer Research UK shops this September.

She added: “With around 610 new cancer cases in children and young people in the Midlands every year,* I hope people will do what they can to show their support. We know a lot of families whose children weren’t as lucky as Wendie-Lou so funding more research is absolutely crucial to saving lives. I’d also like to encourage more people to register on the stem cell donor list.”

Cancer Research UK has helped to more than double children’s cancer survival in the UK since the 1970s. Today, more than 8 in 10 children and young people diagnosed with cancer survive for at least 10 years, but there’s still much further to go.

That’s why, in Birmingham, the charity funds the UK’s largest clinical trials unit dedicated to all children’s cancers. The team co-ordinates groundbreaking studies that make innovative new treatments available to children and young people with cancer across the UK.

Around 18,000 children and young people in the UK have taken part in Cancer Research UK clinical trials since 2002.

Cancer Research UK spokesperson for the West Midlands, Paula Young, said: “Cancer is different in children and young people - from the types of cancer that affect this age group, to the long-term effects of treatment such as hearing loss and infertility. So, it needs a different and dedicated approach that we’re grateful to our supporters for helping to make possible.

“Thanks to their generosity, our scientists are unlocking discoveries about these cancers and translating them into new and better ways to diagnose and treat them. But, despite huge advances, too many young lives are still lost to this devastating disease – more than one a day in the UK.

“That’s why we need as many people as possible to get behind our mission to ensure more children and young people like Wendie-Lou live longer, better lives free from the fear of cancer.”

Pick up a gold ribbon badge in Cancer Research UK shops or donate at cruk.org/childrenandyoungpeople