Toddler with fast-spreading leukaemia now cancer free after pioneering treatment

24 February 2024 , 12:22

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Oti, pictured with his parents and sibling, is now cancer-free (Image: PA)

A toddler who had a very serious type of leukaemia is now in remission after getting special cells from an umbilical cord from America.

Mum, Jo Hughes, said she is so thankful to the person who gave these cells that she started a big drive to get more people to donate. Her friend even became a match for someone else who needed help.

Jo Hughes, who is 35 and used to be a project manager, says she will always be thankful to the kind stranger who helped her little boy after he got sick with acute myeloid leukaemia in July 2022. Oti, who will turn three in March, has been free from cancer for eight months because of the stem cells from an umbilical cord that was saved for 12 years until it was just right for him.

In September 2023, Jo asked her friends and family to join a list of people around the world who can give stem cells, and one of her friends has already been picked to help someone else. Jo knew something wasn't right with her son when he was 16 months old and "didn't want to use his arm at all".

Jo, who lives with her husband Terry, who is an accountant, and their two boys, Remy, who is four, and Oti, who is two, said: "He was too young to tell me he was hurting. He could communicate with me but he couldn't explain anything, so we went to hospital."

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Oti was saved by stem cells from an umbilical cord from the US which had been on ice for 12 years (PA)

In September 2023, Jo organised a drive for people to sign up as potential stem cell donors (PA)

There were no signs of bruising or any lumps and bumps but after having blood tests, it was revealed that Oti had acute myeloid leukaemia, an aggressive cancer of the myeloid cells. Jo said: "I didn't expect it because that word hadn't entered my head."

"It all happens very quickly so the shock is that you're told he has leukaemia and then within 10 minutes he had a cannula in and plasma being put in. The next morning, he had surgery to get his Hickman line put in and then chemo started the day after. Any idiot can survive a crisis, it's the day-to-day stuff that wears you down, you go into survival mode and you just get on with it. Oti was very lucky in that he responded to chemo very well and coped well. We were the lucky unlucky ones."

Jo recalls not having time to process the shock of her son's diagnosis during six months of chemotherapy as Jo and Terry took turns living at Addenbrooke's Hospital where Oti stayed as an inpatient. He went into remission in December 2022 but the cancer, which Jo described as "horribly aggressive", returned in July 2023.

The only option to kill the disease was a stem cell match. Jo added: "Parents aren't expected to be matches but siblings are more likely so Remy was tested but he was not a match. Then it was a case of joining the register and waiting for a match."

Oti's life-saving stem cell donation came from a kind stranger in the US. Jo shared: "Because the umbilical cord registry works slightly differently, we'll never know who the donor was. It's incredibly magic that there's a woman out there who doesn't know that she saved my son's life."

After Oti's transplant, they took it "day-by-day" and two weeks later, they were overjoyed to learn it had worked. Oti had to stay alone for 48 days after his transplant so he could get stronger.

Jo wanted to help others after what happened. In September 2023, she teamed up with DKMS to get more people to join the stem cell register. The charity says you might have a one in 800 chance to donate, but Jo was amazed when a friend who came to her event was picked as a match three months later.

Another friend had already joined the register and got the call to donate stem cells too. Jo said: "Now when we see each other, there's just this crazy bond which is pure magic. Because the stem cell registry is different to the umbilical cord one, he will be able to be in touch with the recipient after two years.

"You have parents that are on their knees because they cannot save their children and these people do it for you. They're real-life superheroes." Oti will need to wait until he is in remission for two years before getting the official all-clear, but Jo said the riskiest time for relapse is in the first six months.

Oti has now been in remission for eight months and this week he had his Hickman line removed. Jo said: "He's honestly thriving. I now could not tell the difference between him and his brother health-wise."

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"I remember friends and family offering help and support while he was going through treatment, offering to bring toys and food to the hospital, but I didn't really want anything apart from them to turn up to the donation drive, which they did. It's genuinely incredible, just a chain of people helping people across the world anonymously."

To sign up to the DKMS donor register, visit: www.dkms.org.uk/register-now.

Ellis Whitehouse