Oranienburg, Germany – Six-year-old Livian is facing a heartbreaking prognosis. Despite a courageous three-year battle against neuroblastoma, a rare and aggressive cancer of the nervous system, his parents have been told that modern medicine has exhausted its options. Livian understands he is nearing the end of his life, and is preparing to say goodbye.
Neuroblastoma affects approximately one in 100,000 children annually. The disease originates in immature nerve cells, most commonly in the adrenal glands, but can occur anywhere along the sympathetic nervous system. We see a particularly challenging cancer to treat, especially when it has metastasized, as it did in Livian’s case.
Livian’s journey began after his fourth birthday, when he started experiencing severe leg pain. Initially, his father, Sven A., hoped the discomfort was simply growing pains. However, the pain persisted, leading to a diagnosis at the Charité hospital. At the time of diagnosis, the cancer had already spread, forming metastases throughout his body.
For a year and a half, Livian underwent intensive chemotherapy and radiation therapy. In March 2025, there was a moment of hope: scans indicated the cancer was in remission. However, this relief was short-lived. Just a month later, the pain returned, and subsequent tests revealed the cancer had recurred, establishing new tumors in his skull and pelvis.
Livian responded with remarkable resilience, referring to the tumors as “monsters” he was determined to defeat. He underwent ten weeks of stem cell therapy, receiving cells from his father in an attempt to bolster his immune system and target the cancer. Unfortunately, this treatment proved unsuccessful, and the disease continued to progress.
Currently, Livian’s condition is deteriorating. He is weak, requires constant intravenous fluids and nutrition via a feeding tube, and now weighs only 18 kilograms. He relies on a wheelchair for mobility. His father reports that doctors have informed the family that further medical interventions are unlikely to halt the cancer’s progression. They estimate Livian may not live to see his birthday in early April, and certainly will not reach Christmas.
In a testament to their honesty and respect for their son, Livian’s parents have openly discussed his prognosis with him and his nine-year-old sister, Seraphina. While the conversations were understandably difficult, Livian appears to have accepted his fate with a surprising degree of calm, having been repeatedly exposed to illness and death during his hospitalizations.
Remarkably, Livian has begun to contemplate what lies beyond this life, speaking of going to heaven and wanting to act as a protector for his loved ones. He wants to watch over his sister, ensuring she is safe from harm, and to provide comfort and well-being to his parents.
Recognizing the emotional and financial strain on the family, the head of Livian’s daycare center has launched a fundraising campaign to allow them to focus on creating cherished memories during this precious time. The funds will not be used for expensive treatments or material possessions, as Livian believes these cannot be taken with him. Instead, the family hopes to fulfill some of Livian’s remaining wishes.
Livian has expressed a desire to paint Easter eggs with his family and to go camping at Lake Senftenberg in August. These simple pleasures represent the moments that matter most to him, and the fundraising efforts aim to make them possible.
Livian’s story is a poignant reminder of the devastating impact of childhood cancer. While advancements in treatment have improved outcomes for some children, aggressive cancers like neuroblastoma remain a significant challenge. The focus shifts from cure to comfort and quality of life, allowing families to cherish every moment together.
The case also highlights the importance of early diagnosis. While Livian’s initial symptoms were dismissed, prompt investigation of persistent pain and unexplained weight loss is crucial in identifying potential underlying medical conditions, particularly in children.
