Eva’s happy her hair’s back, though her mother says she needs to grow more confident that she’s getting well.
Four-year old Eva lives with her mother, Amy, tree-surgeon father Dave and 11 year old sister Mia. In the run-up to her third birthday, Eva caught a cold she just couldn’t shake off. Then she began limping. It could have been a fluid build-up on her ankle, but her parents took her to Kettering hospital for a blood test, still thinking it wasn’t serious.
Then the hospital asked them to come back at 6pm. It was leukaemia.
It was a cruel double blow as Amy’s grandfather Arthur Winston had just been diagnosed with leukaemia too.
For ten days the family was visiting the Royal Hospital at Leicester to visit Eva on the fourth floor, and granddad on the fifth where he died 10 days later. Amy said:
“He had decided to have no treatment, and I had to tell Mia he was going to die. We were very close. It was tough.”
Tests on Eva showed that she had four platelets (which enable the blood to clot) instead of the 200 plus she should have had. It turned out she had acute lymphoblastic leukaemia – with a rare chromosomal defect known as "Philadelphia". It meant as well as the chemo-treatment she was having, Eva needed a bone marrow transplant.
“I thought – how are we going to do that? They wanted to test Mia, and that would be a one in four chance of being a match. But no, it wasn’t. Dave and I were tested – and that was no good either.”
The family got in touch with The Anthony Nolan Trust. Lots of relatives were volunteering to be tested and at the end of January 2007 the family organised their first donor session in a local school hall with four nurses – and 421 volunteers.
There were so many, they ran out of needles and had to turn 150 people away. By the time they had organised two more sessions, they had registered 600 volunteers, but still no match.
Incidentally one man in his 20s came to the first session, but had to be turned away. He came again to the second, and later got a call from another leukaemia sufferer and Amy revealed: “He’s going to save another little girl’s life, now.”
Eva came home in mid-January but had to go back into hospital for more chemo-therapy. She lost all her hair. And now Amy has written a children’s book about how she coped with the problem.
“It’s a story about the hairy fairies. I got a bag to collect all Eva’s hair which was falling out. I told her that the hairy fairies take it away and bring it back when you’re better. I made it into a book to help other children - with a draw-string bag to go with it.”
Then The Anthony Nolan Trust came up with the only match – out of eleven and a half million donors. It was from a cord donated by the parents of a little boy born in New Jersey, USA just 5 months before Eva's diagnosis.
The transplant was carried out at the Birmingham Children’s Hospital in May 2007 and involved total radiation treatment pre-op.
“It was scary after the transplant, waiting to see if she would take it – or reject it.”
There was a series of virus problems and Graft-versus-Host induced skin problems but she came home after five weeks.
“She’s still at home (March 2008) still on medication, and using a feeding tube. The cancer has gone…but she’s still not a normal four year old.”
But Eva’s happy her hair’s back, though her mother says she needs to grow more confident that she’s getting well.
Amy concluded: “I didn’t think I would be the sort of person to be able to cope. But when I thought she was going to die, I thought I would do everything I could, as positively as I could manage. I wouldn’t want to have lost her and looked back thinking I should have done more.”
