Kids Cancer Charity

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Kayla's Story

Photo relating to the story Kayla was being poorly on and off for a few weeks but the doctor just said it was a virus and to give her Calpol, which I did. I can still picture her in my mind lying on cushions under the window fast asleep, but with a temperature and being sick.

I lay her there because a lovely breeze was coming through the window and I thought it might be cooling for her, my little flower. She picked up again but a few days later when we were at Knowsley Safari Park she said her neck was hurting and stiff. It had been raining and I thought she had caught a chill, but it carried on all day and I was worried about her. I thought I was a nuisance going to the doctor's all the time, that's how they make you feel.

Anyway we got through the long school holidays and she went back to school and started in unit 2, a new teacher too who is very nice, but after a week or so she started saying she wasn't well. I thought she just didn't want to go to school, I even told her teacher that I thought she was just playing up. The teacher told me to take her home as she didn't look well and had gone a terrible white colour – very pale, a few people commented that morning – I won't forget it – it was a Wednesday. I went home and made another appointment to see the doctor right away, but it wasn't until 5.00p.m. before she saw someone. I knew something was wrong, I just knew it, and then it all started on this Wednesday teatime.

We were sent across to the hospital as the doctor had felt her tummy but hadn't said anything. She went out of the room, came back, then she said to me (I was on my own with her), she could feel something either on her spleen or her liver – you will have to go to hospital to have her checked out. I went outside to tell my husband who was waiting for us in the car with the other two girls. We went to hospital, we must have waited 2 – 3 hours, even longer, for her to be checked and examined, taking her blood – that was a nightmare for her. She never stopped screaming at doctors and nurses from that day forward. She hated them all touching her; she hated needles and did so for months on end. They took their tests and said we could go home and come back the next day for the results. This we did. I had inkling what it was, a doctor took us into a room and about 8 more followed us. Kayla was playing with a nurse who was looking after a baby outside. We knew it was bad, it had to be with so many people coming to tell us her results. 'She has a tumour on the liver' the doctor said to us. I just went to pieces, screamed, cried, cried and cried. We couldn't believe it. The doctor said '‘it doesn't mean its cancer'. I thought, yeah right, now that's why my little princess has been ill, Calpol was what I was told to give her. Cancer, my baby has cancer. That night we were sent to Pendlebury Children's Hospital where a scan confirmed what the doctors were saying. More blood was taken, more screaming and more stress, as I was seeing what she was going through. 'It's a large tumour' they said 'covering most of her liver and she has nine tumours in her lungs'. I was crying whilst waiting to see her consultant, a very nice man called Guy. I remember pleading with him 'please don't let my baby die, she's beautiful'. I kept saying 'don't let her die'. I need her, she's so clingy to me, always has been, she started her life bad to begin with, but that's another story.

I had to spend our first night with her on the Cancer Ward. I could hear the other kids being sick from their awful illness. I was hysterical and when Kayla fell asleep, I just went into the corridor where she couldn't see me and cried and cried. I collapsed in a corner and was taken to a room. I didn't sleep that night; this was our nightmare, a living nightmare. We had to break the news to Jess, she was devastated when she knew it was cancer. Her friends at school and the teachers couldn't believe it, but they have all been wonderful to us all. Jess had to take a back seat from me as I had to spend all my time with Kayla from start to finish of this dreadful disease. I was with Kayla, she wanted only me, and we have always been close. Tasha had just turned two as Kayla was diagnosed in September, just after her 7th birthday, so Tim did the chores at home, taking Jess to school and seeing to Tasha. He came to hospital every day without fail. We were both shattered. Everything's changed now.

They did a biopsy to confirm the cancer – they were right – 'it's called a hepatoblastoma' they said 'but we can't remove it, it's too big, we will have to shrink it first'. So she was started on chemo, two different chemos, one week on, one week off, it made her very long brown hair come out. I was brushing her hair one night whilst she was asleep and it came out in clumps. I was more devastated than Kayla. She got used to it and wore hats or a lovely bandana wig. The chemo made her ill but she was so strong. The anti sickness drugs made her irritable and moody and she was snappy with me, but she was going through so much. I took everything she gave me with a pinch of salt, poor thing. I was worried about Tim and the girls on top of everything else, but the good news was it was shrinking the tumour.

Eventually on 10th February 2005 the tumour was removed along with over half of her liver. She was in theatre for nine hours, but were they said she was going to be on a ventilator, she was wide-awake when she came out, and on to the High Dependency Unit. She even heard my mobile phone ringing. I still stayed with her, she went very yellow and I thought I was losing her, but the consultant reassured me and said the jaundice was normal. It was awful seeing her going through so much. I was sleeping on a chair at the side of her bed. I didn't want to leave her, but I was exhausted, so I was sent to a parents' room where they called me if Kayla needed me, which she did quite a few times through the night. I didn't mind, I wanted to be with her anyway. I was missing Tim and the other girls badly. Jess was missing me too. I was showering Jess at the hospital as her Dad would rather I made sure she was clean. I was missing home life, all the normal things and, even when we were back home, we never knew when we had to rush back.

After Kayla's recovery from the big operation, chemo started again, and every time we were home and her temperature went up, we had to rush back to Pendlebury, as it was an infection. I had to keep checking her temperature, Kayla hated that too, and having a Hickman line in to take blood, that has to be flushed weekly, she hated that, and her thumb prick every Monday. She had hundreds of stickers for bravery, even though she didn't feel brave. Everything she had done was with dread, and all I could do was reassure her. I got good at that.

When she was home she rested on the sofa and slept. That was my time to cry, I let all my emotions out, as did Tim. We cried so much, but we felt so helpless – our little girl's life was in someone else's hands. Even the consultant said that she could have died during the operation, it was a very big operation, she could have bled to death, or when they opened her up, they might not have been able to do anything. In that case they would have closed her up again. This was our precious little girl he was talking about, but he had to tell us the bad bits before he went ahead. God and Kayla's guardian angel and her twin sister got her through that operation. God didn't want her, he knew how much I needed her so he never took her, but she's so brave and we are so thankful to everyone.

Chemo finished in April 2005 and Kayla has been in remission for twelve months now. So many people we met in the hospital have lost their kids, or the cancer has returned. Our Kayla is doing so well, she has check-ups every 3 months and that's a dread for us all. We are back to normal now but our lives have missing parts during the years 2004 and 2005. We do more as a family now as we don't know what's around the corner. Kayla never talks about it at all and her scars don't bother her. She looks like she's got three tummy buttons from having drains in there, but she jokes about it. She's very tough, tougher than I would have been. She looks forward to her holidays now and being spoilt. Jess and Tasha have to be spoilt too as we can't leave them out.

Life is still difficult and we still worry. If she gets ill I fret and dread what it is, but she's doing really well. Jess comes for cuddles from me more now. She has felt so left out, and has told me so. Tasha doesn't really know any different. I've slept on the sofa with Kayla so much and for so long I found it hard to go back into bed. I was scared to leave her alone, I wanted to be near her 24 hours a day. That went on for months. I still feel like that now sometimes, but I try to break the mould and get in my own bed. I love that little girl so much, like my other girls, but I'm still so scared I'm going to lose her to that dreaded disease. She has had it once and I know she could get it again, so we never rest from it, never stop thinking about it, dread her appointments because we don't want to know what they're going to show.

Life has to go on but it will never be the same for any of us. In June this year Kayla is getting an award for her bravery. It's a medal, and she goes to the Town Hall. She can't wait to show it off to her friends.
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