Navigating lack of information, conflicting views and changes in disease

The Thuraisingham family

Odile is a healthy, cheeky and loving four-year-old. She was diagnosed with low-risk neuroblastoma soon after she was born in 2019 after a seven-month ultrasound scan identified a tumour growing inside her. Odile faced no further treatment apart from regular scans to monitor the tumour growth but, after a short break from scans, the tumour had tripled in size meaning her disease risk staging had changed from low to intermediate neuroblastoma and she would require treatment.  

Odile’s parents, Iulia and Padmesh, received support from Solving Kids’ Cancer UK in accessing a second opinion, and further scans results showed Odile had no MYCN amplification or any other significant risk factors, so the disease staging was reconfirmed as low-risk. 

The family made the difficult decision, with the support of Solving Kids’ Cancer UK, their healthcare team and the second option of Memorial Sloan Kettering to go with a ‘wait and see’ approach and avoid any toxic and aggressive treatment for Odile. Recent scans have shown that the disease on Odile’s liver has completely cleared and the tumour on her adrenal glands is shrinking. 

Odile's mum, Iulia, talks us through their experience of when the risk staging of the disease changes: 

“As a parent, to hear your child has cancer, it’s absolutely devastating. It’s frightening."

Shock and denial 

"It felt like the whole world had stopped and we were going to fall off the planet. It was completely unexpected, and we were in shock and denial. It took us a while to process the news."

"Our brains weren’t able to process too much at that time and the information we found online was only referring to the high-risk neuroblastoma. Low and intermediate risks were hardly mentioned and we thought we might have to go with treatments for high-risk neuroblastoma. There was also a lot of jargon everywhere which didn’t help.

"Solving Kids’ Cancer UK had a lot of knowledge on low and intermediate risk, and our discussions with Donna, part of the Family Support Team, particularly gave us a lot of hope and support in our decision to not start treatment yet and wait."

Different and conflicting views 

"Our outcome could have been very different without Solving Kids’ Cancer UK."

"We reached a point with the hospital where we had different and conflicting views and advice on the next steps that we should take and, without the knowledge provided by Solving Kids’ Cancer UK, we might have made the wrong decision.  

"Their support had been instrumental emotionally as well. I personally was almost non functional, scared and terrified for Odi’s future."