‘Practical help was invaluable, but the emotional help was so much more’

Charmaine Green knew that her daughter was unwell but she never expected to hear the devastating news that two-year-old Nevaeh was suffering from leukaemia.

Her story, however, is a good news one as this Christmas the family will be celebrating five years and nine months since Nevaeh’s successful treatment came to an end.

To mark this milestone Charmaine, who is from Croydon, has chosen to share her story with the South London Press to help raise awareness of Rainbow Trust, which provided vital support to her family during a traumatic period in their lives.

Rainbow Trust Children’s Charity supports families all over South London such as Charmaine’s, who find themselves caring for a life threatened or terminally-ill child. Rainbow Trust family support workers are there every step of the way to help families during diagnosis, treatment and, if needed, through bereavement.

Charmaine’s story: “Nevaeh was born a healthy 8lb 1oz on November 13, 2007. The baby of my three children, she was a healthy little girl up until the age of about one-and-a-half when she started to pick up every bug she came into contact with.

“Just after her second birthday, Nevaeh stopped walking while at nursery and started shuffling on her bottom.

No one knew what was wrong so I immediately took her to the hospital. This was the start of a very long journey. “Over the course of about four weeks, we made five visits to the hospital and one to our GP. “Something new seemed to happen every day.

Nevaeh started sweating profusely at night, she kept getting temperatures that came and went, she was irritable and not herself, and the problems with her legs and arms came intermittently.

“While I knew something was wrong, and that everyone was missing something, I was convinced that I was going to get arrested as I felt like the medical professionals thought I was making it all up.

“For Christmas 2009, Ney received a toy kitchen but she could only sit on her bottom to play with it, stretching to reach the higher parts but never standing. I decided we should go to A&E again.

“This time they decided that Ney should stay in hospital for the night for observation, and her temperature ‘spiked’ out of nowhere.

The nurses couldn’t believe that someone who appeared so well could get a temperature so high. This is when the tests started. It was no longer going to be a one-night hospital stay.

“On New Year’s Eve, 2009, a nurse and doctor came on to our four-bed ward and asked if I could come with them. I didn’t think for a minute I was about to get news that would change my family’s life forever.

“It was then that the doctor told me Ney had leukaemia. I saw New Year’s Eve in, sitting beside my Ney crying my eyes out.

“Then the treatment started. Within three days of the diagnosis Ney had had a blood transfusion, a general anaesthetic to put an intravenous tube in her chest and her first dose of chemotherapy injected into her spine to prevent the cancer from spreading to her brain.

“After two weeks in hospital Ney was discharged and became an outpatient, which involved constant trips to and from the Royal Marsden Hospital.

“Not having a car I was reliant on friends, shared hospital transport or taxis. Then someone told me about Rainbow Trust.

“I remember the first phone call I made to Rainbow Trust. I don’t remember the name of the person I spoke to but I remember feeling so calm when I was talking to them.

“We were then introduced to our Rainbow Trust family support worker Lyn Sweet.

“Lyn was to become a new member of our family. She was a massive part of our journey. Ney took to her straight away.

“She didn’t just talk about cancer all the time, like I thought she might. She started attending all our appointments with us to support us and sometimes Lyn would collect my other two children and bring them up to visit us.

“When you’re on a cancer journey, no matter how confident you normally are, it knocks you for six. I pride myself on being quite vocal but watching my baby fight for her life often left me a wreck.

“Lyn was fantastic. She helped me remember questions and collected Ney’s medicines from the pharmacy so I never had to leave her side.

The practical help was invaluable but the emotional help was so much more.

“We really could not have got through our journey without Lyn. She’s been with us through some seriously tough times.

“Typically, girls with leukaemia are treated for 26 months. I cannot begin to tell you the lessons I learned in that time. The most important one being that I never knew just how strong my (then) two-year-old daughter was.

“I also sadly learned friends and family are not always there to help, but Lyn was. We were lucky to be put in touch with Rainbow Trust and, more importantly, I still have my now 10-year-old.

“With nearly six years off treatment I will forever be thankful that we made it through that journey, and Lyn will always hold a special place in our hearts.”