Children With Cancer Fund
Children With Cancer Fund
Children With Cancer Fund (Polegate)
5 Western Avenue, Polegate, East Sussex, BN26 6EP Tel: 01323 488561 Registered Charity No.1110644

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Lilac's Story


Below is Lilac's story which was sent to us by her mum Holly:

Lilac was a normal extremely energetic and cheeky five year old who would never sit still.

Just before the Easter holidays this year there was a virus in her class at school with symptoms of lethargy and a high temperature. A week later Lilac was still the same. We met her friends down on the beach and realised that they had all bounced back, except Lilac. We took her to the GP who said "It’s a virus here are some antibiotics". A week later and no better we took her to the A & E in Brighton. We were nearly sent home again! But I begged them to do a test for anaemia at least as Lilac was the strangest colour, a luminous grey, quite extraordinary.

Luckily they did do the test and the nurse came to the café to find us, at which point my heart sank. The doctors told us immediately that Lilac had Leukaemia and that we would be admitted straight away and then transferred to the Marsden ASAP. The world stopped still, or my heart did, I felt I was in a dream or a film, nothing was real. The whole experience was forever imbedded in history as it was the day before the Royal Wedding. We spent our first awful day in hospital watching everyone else celebrate.

We were admitted to the Royal Alex and the start of the very long and painful journey began. The first day of holding your child down so that the nurses can take her blood and her looking at you wondering why you would let these people hurt her will never leave me. You cannot explain to a five year old why this much pain is necessary to help her get better and you never will.

We were transferred to the Marsden where Lilac had her portacath put in and the heavy treatment began. We were there for what seemed like weeks. It was amazing to meet so many lovely souls in such a scary place. We were helped through the first few dizzy days by the wonderful Francesca and Blue who showed us the ropes. We also met the lovely Maisie and her parents. Just a hug and a cup of tea meant the world.

At last we were sent home but, after only a week, we were back in hospital as Lilac was in severe pain. After a lot of confusion over the cause of her pain we were retrieved to St Georges Hospital in London, the scariest ride of my life. Lilac had been incubated and I sat helpless in the back of the ambulance. We were admitted to the PICU and the next day they operated. Lilac had a perforation of the secum which can be caused by one of the chemo drugs. Hooked up in intensive care John & I found it hard to look at the poor girl without welling up. As parents you always try to put on a brave face even though your heart is breaking. Scarlette, our eldest daughter, joined us in London as she could not cope with all of us being away, poor lamb. The Ronald McDonald House saved our lives and our sanity by providing a safe haven away from the hospital.

After another eternity we were sent back to Brighton and, after even more weeks, sent home. By now Lilac had lost half a stone, she was thin, weak, couldn’t walk and her hair had fallen out. The sight of her every day was devastating, a visual reminder of the intensity of the treatment. At least at home, with good food and friends coming round, she began to perk up. She decided she wanted a wig and chose a long blonde one from The Little Princess Trust! The wig looks great and really helps with her confidence.

Lilac managed to meet her new teacher at the end of the summer term, and attend the end of term picnic. People do stare, but you get used to it or tolerate it! We went on holiday thanks to the Luke Cory Fund at the Bunn Leisure Village and had a wonderful time. After being in hospital so much, we all appreciated every minute of sheer happiness. On our return we had been invited to a Go Kart day by the lovely Chris & Ursula of the Children with Cancer Fund. We had such a fun day and it was lovely to see Maisie and family again. Lilac and Maisie had a ball. At the end of a lovely day Chris presented us with our wishes. The girls were so happy Lilac with her Sylvanian Camper Van and Scarlette with her new Blackberry! I was over the moon with a new laptop and, to top it off, John was presented with a flat screen TV! We felt like we had been on The Generation Game!

We have since enjoyed our wishes very much and last weekend was John’s turn. Chris had booked John and his band into a recording studio in Eastbourne which they thoroughly enjoyed. As they were leaving Chris presented John with his very own Ludwig drum kit!!!! He is still smiling and Lilac turns out to be a natural on the drums. Much to the cat’s annoyance!

Lilac has survived her first round of intensification without being admitted, which is a miracle, and continues to defy the nurses expectations by scooting down the day ward for her chemo with her blonde wig streaming out behind her. We have got this far on the long journey with a lot of help from a lot of lovely people. The kind gestures and wonderful wishes from the Children With Cancer Fund really brighten up what can seem like an eternity of dark days.

Thank you guys from the whole family!


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