Accessing clinical trials

The Hayes family

Alice is a bubbly, bright, beautiful, and brave nine-year-old who loves to sing, act and entertain. In April 2022, she was diagnosed with stage 4 high-risk neuroblastoma. For 14 months, Alice endured gruelling treatment for neuroblastoma including taking part in two clinical trials at the Sant Joan de Déu Barcelona Hospital. With scans confirming Alice was clear of disease in June 2023, the family flew out to New York in July for Alice to start the bivalent vaccine clinical trial with the aim of keeping her cancer away.

Alice’s dad, Dylan, shares how Solving Kids’ Cancer UK helped him and Alice’s mum, Norah, navigate such a difficult time and help them make some difficult decisions:

“We found out about Solving Kids’ Cancer UK through our early research into neuroblastoma.

“We found a lot of very useful information such as the recordings of the Neuroblastoma Parent Global Symposium that Solving Kids Cancer UK published. We also spoke to other local families whose children were neuroblastoma patients and they were very positive about the excellent support that the charity provides to parents who are inevitably in shock after receiving their child's diagnosis.”

Impartial and easy-to-understand information

“Initially the most beneficial support we received from Solving Kids’ Cancer UK was sharing impartial and easy-to-understand information about pathways available in Europe for neuroblastoma patients. They were really helpful in sharing advice and information on different treatments types and the associated trials that were being conducted."

“This helped our family with some very difficult decision-making and provided comfort and hope that we were not alone in facing the challenges of neuroblastoma.”

Access to the right clinicians

“Prior to commencing treatment in Barcelona, Solving Kids’ Cancer UK helped us in gaining access to the right clinicians in Barcelona and MSK New York who answered our questions and concerns.

"The charity organised enrolment onto the Naxitamab trial and assisted with all of the forms. They also helped with engaging with the finance team as we had to organise access to funds to cover treatment in a very short timeframe.

“Throughout this period, Solving Kids’ Cancer UK provided great comfort to us throughout this difficult period. If we had concerns or needed to ask a question, they provided advice to us.

“We really appreciate that they were looking out for Alice with no agenda and genuinely cared for her wellbeing. Without them, it is likely that we would not have been aware of the options available to us including treatment in Barcelona which has resulted in a successful outcome for Alice to date.”