The parents of a brave three-year-old who died from a rare, aggressive form of cancer say sharing his story and inspiring others is part of their son’s legacy.
Adamas Jasinauskas had neuroblastoma and endured various rounds of chemotherapy, radiotherapy and immunotherapy, as well as having surgery to remove his left kidney. He also made national headlines after undergoing cell therapy during a groundbreaking clinical trial in Italy. However, his cancer ultimately proved too aggressive, and Adamas died at home in Peterborough on 1st September 2024.
Parents Robertas and Egle say their son “radiated hope and happiness” and want to help raise awareness of those that supported them, including East Anglia’s Children’s Hospices (EACH). The family had daily visits from the charity’s symptom management nursing team, and both parents continue to receive bereavement support.
“Adamas was a clever, polite and amazing little boy,” said Robertas, 35. “He was full of love and life and radiated hope and happiness – infectious qualities that rubbed off on everyone he met. He was also brave and inspiring, in terms of the way he carried himself and faced everything head on. He was one of a kind, and we both count ourselves extremely fortunate and blessed to have been his parents. He was our little superhero.”
Egle says talking about their son’s journey is an important way of shining a light on charities like EACH.
“We had such amazing support from EACH,” said the 34-year-old. “The symptom management nurses came two or three times a day towards the end of Adamas’ life. They assessed his needs, changed his syringe driver and were always on hand for advice – even if it meant a phone call in the middle of the night. They were incredible and did such a great job of managing Adamas’ symptoms.
“They made sure he wasn’t in pain and made him as comfortable as he could possibly be. They ensured he wasn’t suffering, for which we’ll always be grateful. Adamas lived for another nine days, after which he passed away during the night with a smile on his face.”
One of EACH’s Clinical Nurse Specialists went to the family home the following morning, to verify Adamas’ death. She also contacted the funeral director on their behalf and both Robertas and Egle continue to have counselling sessions, to help come to terms with their grief.
“I didn’t even know there was such a thing as a children’s hospice,” said Egle. However, people need to know more about these amazing places and how they help families at the hardest of times. One of the positives to come from this awful situation is the fact we’ve met so many lovely, kind people, like those that supported us from EACH. I just wish it was in different circumstances.
“We love talking about our son and honouring his name, by sharing his story to help other children and families in a similar situation. It’s the least we can do. I promised I’d make him proud, and that’s exactly what I want to do.”
Both Robertas and Egle, from Lithuania, say their counselling sessions are an invaluable way of sharing their thoughts and feelings.
“Robertas is the only person in the world who understands the unconditional love we shared for our son, as well as the hurt and heartache,” said Egle. It’s not always easy to let your walls down, but I feel fortunate to have developed such a strong relationship with my counsellor. It’s helped so much, and I feel I can say anything to her. I’m so grateful for that support and know I can show whatever emotion I want with her, whether it’s just talking or even crying or screaming.”
Robertas sees a different counsellor every fortnight.
“It’s good for me to talk,” he said. We’re both hurting but grieve very differently, so it’s nice for us to have someone different to open up to. I like having someone else to share my feelings and get advice.”
