A five-year-old boy whose cancer has relapsed for a fourth time has just begun a treatment that his family say is his last hope for survival as his mother pleads for help funding his treatment in the US.
Dillan Ramsey-Aksehir was one year old when he was first diagnosed with leukaemia during the first coronavirus lockdown in May 2020.
His mother Amy Ramsey, 37, first took Dillan to the doctors because he was suffering from a sore leg that doctors thought was a fracture. She told The Independent of her devastation and disbelief upon being told by doctors of her firstborn’s diagnosis.
“I thought I would be sent home from A&E with antibiotics – you never think someone is going to tell you something like that. It wasn’t even real what they were saying – how is that even possible when he’s such a healthy, active little boy?”
Amy Ramsey, 37, told The Independent of her devastation and disbelief upon being told by doctors of her firstborn’s diagnosis— (Amy Ramsey)
She described her son as boisterous and funny, telling of his love of dinosaurs and cars. “He’s a character,” she said. “He is the most precious, kind, amazing little boy.
“In this child cancer bubble that I live in, Dillan is the only one left out of all his friends, so right now, it’s very nerve-racking.”
The family, from London, were told Dillan had a good prognosis, and after two gruelling years of chemotherapy, they thought the cancer was in remission— (Amy Ramsey)
The family, from London, were told Dillan had a good prognosis, and after two gruelling years of chemotherapy, doctors believed the cancer may be in remission and the family were told he could stop his treatment back in August 2022.
But, after doctors studied X-rays, they were told the following morning that Dillan had actually relapsed. A relentless treatment regimen followed over the Christmas period, which involved Dillan being put on general anesthetics twice a day while he endured eight doses of full body radiation, as well as undergoing a bone marrow transplant.
However, Dillan relapsed again in March and had CAR T-cell therapy two months later. Amy said his family were told by doctors that, if he relapsed again, Dillan’s only other option in the UK would be palliative care.
A doctor told Ms Ramsey about an experimental trial opening in October in Washington DC, so the entire family flew out in September— (Amy Ramsey)
The five-year-old did relapse again, two weeks before he was due to start his first week at school. Ms Ramsey said Great Ormond Street Hospital told her: “There’s nothing else we can do, there’s now no cure for him in this country.”
But a doctor did tell her about an experimental trial opening in October in Washington DC, so the entire family – Dillan, Ms Ramsey, her husband Oguz Aksehir, 35, and their two daughters Aiyla, 3, and Leyla, four months – flew out in September.
Ms Ramsey said the family are set to stay in Washington DC for a month, as only then will they know if Dillan’s treatment has worked— (Amy Ramsey)
After Dillan was found to be eligible for the new type of CAR T-cell therapy, which is currently only licensed in the US, he began treatment on Thursday. After an initial reaction that sent his blood pressure and temperature dangerously low, Dillan’s observations stabilised by nighttime.
Ms Ramsey said the family are set to stay in Washington DC for a month, as only then will they know if the treatment has worked, with her and Mr Aksehir alternating weeks in hospital with Dillan. If the treatment has been successful, it acts “as a bridge” before they fly back to London, where Dillan will be given a second bone marrow transplant at Great Ormond Street Hospital, which is his “best chance at a cure”.
The five-year-old relapsed again, two weeks before he was due to start his first week at school— (Amy Ramsey)
However, “that’s it,” said Ms Ramsey. “His body wouldn’t be able to handle another transplant.”
While the family is holding out hope for this final chance at saving Dillan, the bills are racking up, and Ms Ramsey is at a loss as to how they will afford his medical care, which is private in the US, as well as their living costs while abroad.
Ms Ramsey described her son as boisterous and funny, telling of his love of dinosaurs and cars— (Amy Ramsey)
Her latest fundraising drive, launched via a GoFundMe page, has already hit half a million pounds. She said it would offer the family “a break and peace of mind while we’re going through this”, as they face another Christmas period spent in hospital.
“I have been a cancer mum longer than I’ve been not a cancer mum,” Ms Ramsey said. “As well as Dillan not knowing any different, neither do I.
The family is holding out hope for this final chance at saving Dillan— (Amy Ramsey)
“I’m just trying to make life as fun and normal as possible for the kids – as long as they’re happy, I’m happy.
“The transplant last year was rough – you just panic constantly every day. But Dillan is laughing and joking all the time when in hospital. I would panic a lot more if Dillan wasn’t the strong and happy person that he is.”
