We Could Not Have Made It Through Without Rainbow Trust Children's Charity

06/02/2017 16:10 GMT | Updated 06/02/2017 16:10 GMT

Nevaeh (Ney), the baby of my three children, was healthy until she was 18 months old when she started to pick up every bug she came in contact with.

After her second birthday, Nevaeh stopped walking whilst at nursery. She started shuffling on her bottom and no one knew why. I took her straight to the hospital as I wanted her checked over.

Typical of any child, Ney started walking almost as soon as we got there but as she appeared fit and healthy, we were sent home without any explanation.

Over four weeks, we visited the hospital five times. 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.

I knew something was wrong and that doctors were missing something. First Ney was diagnosed with an irritable hip then juvenile arthritis.

Ney received a toy kitchen for Christmas, but she never stood up to play so I took her to A&E. I was convinced I was going to get arrested as I felt like the medical professionals thought I was making it all up.

Luckily, we saw a medical student who decided that Ney should stay in overnight for observation. I wanted to scream with joy. Joy because I knew something wasn't right and I finally felt that she was in the right place. That night I learnt a new word - 'spiked'. Ney spiked a temperature that came out of nowhere. This is when the tests started.

For my two year old, everyone that came into the ward seemed like the enemy as they all wanted to prod and poke her. She literally fought anyone that came near her. On New Year's Eve in 2009, a nurse and doctor came to our ward and asked if I could come with them. At that point, I was convinced they were going to have me arrested and wanted to lecture me on wasting their time.

We went to a room at the end of the children's ward.

We all sat down and I noticed they positioned me in between them but I still didn't think anything of it. The doctor talked about the blood test results and abnormalities. She said they were sending a sample of Ney's blood to the Royal Marsden by courier. My ears pricked up; I knew the Marsden was a cancer hospital. The doctor said they believed Ney had Leukaemia. My first reaction was to laugh. I told the doctor they had already wrongly diagnosed Ney and this time I was sure that they'd come back saying they were wrong again.

The doctor said they would know more when the results came in at 6pm. I remember walking back to the ward still feeling they had it wrong until I passed the nurses station. They all went silent when I passed and the looks of pity on their faces brought tears to my eyes.

Those hours of waiting were the longest of my life. At 8.05pm, I spotted four people outside my baby's hospital room putting on gloves and gowns. I knew then she had cancer. It doesn't take four people to tell you they got it wrong. I saw New Year's Eve in, sitting beside my Ney crying my eyes out.

She had a blood transfusion and I couldn't stop crying and wondered if I'd ever run out of tears.

Ney had her first general anaesthetic and they put a Port-a-Cath into her chest. This would be how they gave her chemotherapy, medicines, or took blood through the course of her treatment. She also had a dose of chemotherapy injected into her spine to prevent the cancer from spreading to her brain.

We spent two weeks in the hospital. The first time we came home, Ney was a shadow of her former-self. She looked so lost. After three days, she got sick again and we went straight back into hospital.

We eventually returned home and started outpatient appointments, just coming in for check-ups and treatments. I didn't have a car so we relied on shared hospital transport.

On one trip we shared the ride home with an elderly gentleman who was coughing his heart out the whole journey.

Two days later, Ney ended up with bronchiolitis. We spent a week in hospital where she was given oxygen to help her breathe.

That was the last time we used hospital transport! I started paying for taxis if friends couldn't drop us off or collect us. Then I heard about Rainbow Trust Children's Charity.

I remember the first phone call I made. I felt so calm talking to them. We met Lyn, a Family Support Worker, soon after.

Lyn was to be a new member to our family. She was a MASSIVE part of our journey. Ney took to her straight away. She started attending all our appointments with us and sometimes when we were inpatient, 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 and 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 physical help was invaluable but the emotional help was so much more!

We really could not have got through our journey without Lyn and Rainbow Trust.

I learnt so many lessons in that time. The most important being that I never knew how strong my (then) two year old was. I also sadly learnt that friends and family are not always there to help.

I can't tell you how lucky we are. We were lucky enough to be put in touch with Rainbow Trust and more importantly, I still have my eight year old. She celebrates five years off treatment in 2017. I will forever be thankful that we made it through that journey, and Lyn will always hold special place in our hearts.