Dominic Rockcliffe, a three-year-old from Portmead, Wales, has been diagnosed with optic pathway glioma, a brain cancer, after his early symptoms were initially attributed to a sickness bug and failure-to-thrive. Following three failed rounds of chemotherapy, his family is now raising funds to travel to Latvia for targeted therapy, specifically the drug Tovorafenib, which is currently available in the European Union.
Dominic’s health issues began at six months old, according to his mother, Kristiana Jansone. Doctors initially classified the infant as having “failure-to-thrive,” a term used to describe slow physical development. In September 2023, following a weekend of persistent vomiting, he was taken to Morriston Hospital in Swansea. An MRI scan subsequently confirmed a diagnosis of hydrocephalus and optic pathway glioma, a cancer caused by a BRAF gene fusion that acts as a permanent “on” switch for cell growth.
Treatment Challenges and Medical History
Following his diagnosis, Dominic underwent emergency surgery at Cardiff Children’s Hospital to fit a VP shunt to manage fluid buildup in his brain. According to his mother, the medical team indicated that without the drainage procedure within 24 hours, the condition would have been fatal. Over the past two years, Dominic has faced additional complications, including an eight-week hospitalization for meningitis after his shunt became infected.
The family’s shift toward treatment in Latvia follows the failure of three rounds of chemotherapy in Cardiff. An MRI in April showed that the cancer had progressed, leading consultants to recommend Tovorafenib. While the drug is not currently part of his UK treatment plan, Dominic’s dual citizenship allows him to access care in Latvia, where the medication is available.
Dominic will be the first child in Latvia to receive Tovorafenib, a once-weekly oral medication.
What Happens Next for the Family
The immediate goal for the family is to stabilize Dominic’s health to ensure he is fit for travel. He is currently recovering from a recent shunt tap surgery and is scheduled to undergo temporary chemotherapy to manage his condition in the interim. Kristiana Jansone has purchased flights for the end of July, though she noted that the process remains difficult given the child’s current health status.
Fundraising efforts are currently underway to cover the costs of travel, vehicle rental, and accommodation, as the family must stay in hotels while in Latvia. While medical care in the Latvian hospital is free for us, the family faces significant logistical expenses, including approximately £1,600 already spent on flights and suitcases.
The transition from standard chemotherapy to targeted therapies like Tovorafenib represents a significant shift in pediatric oncology, particularly for patients with specific genetic mutations. When conventional treatments reach their ceiling, as seen in Dominic’s case, accessing specialized international drug programs often becomes the primary pathway for families, though this requires managing complex logistical and financial hurdles.
Frequently Asked Questions
Why was Dominic’s cancer not diagnosed sooner?
According to his mother, Kristiana Jansone, Dominic’s initial symptoms, including occasional vomiting and slow physical development, were initially categorized by doctors as a sickness bug or acid reflux.
Why is the family traveling to Latvia?
After three rounds of chemotherapy failed to halt the growth of the tumor, doctors in the UK recommended the drug Tovorafenib. As Dominic holds dual citizenship, he is eligible for treatment in Latvia, where the drug is available.
What is the current status of Dominic’s health?
Dominic is recovering from a recent shunt tap surgery and is preparing for a temporary course of chemotherapy to ensure he is stable enough to travel to Latvia at the end of July.
How do families manage the logistical demands when specialized medical care is only available across international borders?
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