A couple who were told their little girl would be unlikely to survive past Christmas are looking to the future after a successful bone marrow transplant.

Doctors warned Arun and Helen Kumar to prepare for the worst last year when their daughter Elsie was desperately ill with blood cancer.

But after several rounds of brutal chemotherapy and a risky transplant, the three-year-old is back at home in Holloway and her future is looking bright.

She was first diagnosed with blood myeloid leukaemia in October 2014. She had chemotherapy and got the all-clear but weeks later the cancer had returned.

“They were all saying palliative care was her best bet,” dad Arun told the Tribune. “They said there’s never been a case of a child who’s relapsed within six months of first diagnosis who survives.”

Over summer, a desperate appeal was launched for the blood stem cell donor needed for Elsie to survive. Finding suitable matches proved extremely difficult given Elsie’s mixed-heritage and the fact she has Down’s Syndrome. An American donor was eventually found with an 8/10 match. Some doctors questioned whether it would work. A seventh round of chemotherapy was required before the transplant and there was a 30 per cent chance Elsie could die within the first week.

“It was an impossible decision,” Arun said. “We agonised for about a month. We talked to doctors, consultants, nurses and even they were saying: ‘I don’t know what I would do in that situation’.”

The last round of chemotherapy was so strong it made Elsie sweat acid and her mouth began to fall apart. Doctors likened it to declaring “nuclear war on the body”. “It was horrendous. In her short life she’s been through so much and she’s just taken it all on the chin. She’s an absolute trouper,” Arun said.

Because of her constant health battles, Elsie is still learning to walk and communicates with sign language Makaton.

“Elsie has been deprived of a normal life,” Helen said. “She’s never played with kids or walked in a muddy puddle.”

The couple are remaining cautious as they know there is still a chance Elsie could relapse. Her immune system is still weak and Elsie, who loves the swings, can only go to the park when it’s quiet and no other children are around.

But finally, after living from one day to the next, they feel they can start to look ahead. Soon they are moving to a house in Tufnell Park and are considering what colour to paint Elsie’s bedroom.

Throughout it all their daughter’s phenomenal spirit has kept them going.

“She’s so strong-willed and really determined,” said Helen. “You can just see the feistiness in her face. She has a real tenacity for life. She just wants to do her thing. She’s taken so much more pain than any adult could take.

“I have to pinch myself sometimes as I just see her and I can’t believe she’s with us. We weren’t expecting to have Christmas with her – now we’ve had her third birthday and we’re thinking about summer.”

The couple are full of praise for the medical staff at the Whittington Hospital, in Archway, and Great Ormond Street Hospital, as well as the help they now receive at home from Noah’s Ark Children’s Hospice worker Jules Adams and The Rainbow Trust.

“Last summer we were doing stuff to make memories, but this summer we are planning for the future,” Arun said. “It’s a huge difference. Last June we were in this long dark tunnel with no end in sight. There’s some light in sight now.”

• Keywords
  CANCER, DISEASE, CHILDREN
• Geographical keyword
  HOLLOWAY
• Persons keyword
  Whittington Hospital, Elsie Kumar