Caroline

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“My Life Back … and More”

Caroline Smyth had no idea that she had been accepted onto the Foundation, as her 21st birthday was approaching we wanted to make her day as special as possible. Her parents kept this a secret and brought her down to London from their hometown in Northampton on her 21st birthday, little did Caroline know that she would be in for a big surprise. With the help of MCS agency and Teens Unite, WHITE CLIFFS were able to make this a day she won’t forget. Michelle Smyth, Caroline’s mum tells us what they’ve been through

“Winter 1992 our lives were as normal as any ones, John worked from home and I helped him, my main job was a mum to our two wonderful children William who I had when I was 32 and our beautiful daughter arrived two and half years after her brother. We had just moved back to my hometown of Northampton so we had family nearby and we had a lovely home everything was going well, perhaps too well.

We started to notice that Caroline was becoming more and more tired at Christmas time and really not coping very well at school, complaining of headaches etc. I took her to see our then GP who said it was probably a “Virus” and to take her back if she wasn’t any better in a couple of weeks, well she didn’t get any better, most days I would get a phone call from her teacher at junior school asking if I could pick her up again as she was ill again. Back to the GP again only this time to be given antibiotics these didn’t make any difference (of course). At around this time we noticed her right eye had started to turn in, almost like a squint so it was suggested we get her eyes tested, she was prescribed reading glasses. One doctor even said that she probably took after her father as he had a squint when he was young! The following week I had yet another call from her teacher saying that Caroline was really poorly could I pick her up again.

This time John said that we should take her to A&E I felt so guilty doing this as it didn’t seem like a proper emergency but we had no choice. This was 17th March 1993 a day that we shall never ever forget, the day our lives changed forever. She was seen by two medics they called for the eye specialist to come and check things, they then started whispering, papilloedema was mentioned I had never heard of it, I now know it means pressure at the back of the eye.

We were then told that she would be admitted to Paddington ward and would probably need a scan, the CT scan, Caroline was given a little bed and some tea and we were told not to worry! Our minds were in turmoil someone had to go and pick William up from school, we had no clothes with us, who would feed the cat etc. That first night was horrible, poor babies crying, and for some reason I didn’t feel as though I should have been there, a young teenage girl was walking around the ward and I started to talk to her and I asked her what she was in for “oh she said I’m waiting for a heart and lung transplant” my heart stopped this can’t be right my daughter has only got headaches.

Next day the scan was booked for about 11.00 she was very frightened, by the afternoon the doctor diagnosed our little girl with a brain tumour, John broke down, in fact we were both crying uncontrollably and just could take in everything he was saying.

We were told that we would have to go to Birmingham Children’s Hospital straight away, but they wouldn’t let us drive so they sorted out a hospital taxi for us, John went home to gather a few things together and then went to break the news to my parents and William. I was driven over to Birmingham with Caroline the taxi driver had the radio on when he picked us up and it was playing a song which I had always liked but now it was just so poignant “tell me it’s not true” by Barbara Dickson it just kept going over and over in my head, it was all like the most awful nightmare, and why was the world still looking so normal, traffic whizzing up the M6 no one giving us a second look, this can’t be right.

We arrived at Birmingham Children’s hospital quite late, it was an old Victorian building and the ward was one of the really old fashioned ones with about 14 beds in it young babies at one end and older children at the other end, the noise was unbelievable, there were camp beds at the side of some of the beds this is where the mums slept. Caroline was so tired she was just glad to get into bed.

The next few days were a bit of blur, so many tests etc. she was put on steroids to reduce the tumour before surgery but these made her so hyper, just not like her and she started to put weight on. Neither of our children had been Baptised we wanted them to make up their own minds about religion when they were older. The thought of Caroline having surgery that she might not recover from made me want to have her baptised, the hospital priest came the day before the op and gave her a beautiful rosary and a pray book it was very emotional.

The operation was 23rd march the side of her head was shaved ready and I went with her into the theatre with her, no words could ever say how I felt at the time, it’s just too awful. We were told the operation could leave her brain damaged, or paralysed but we had no choice we just wanted her to live so very much. When the operation was taking place we went for a walk, and went to church, we were both brought up Catholics and we prayed so much.

The operation went well, 95% of the tumour had been removed and the little bit left would need radiotherapy which seemed so simple, but how naïve we were. A few days later the results of the biopsy came back it was a very rare tumour PNET (primitive Neuro- ectodermal) the prognosis was awful no child had lived for more than 5 years with this sort of tumour.

The radiotherapy would be done at the Queen Elizabeth Hospital in Birmingham, we would have to go everyday for about 7 weeks, and this just seemed so daunting we were offered a room in Birmingham but we wanted to keep things as near normal as possible especially for William and Caroline.

The first trip to the QE was a chat with the Doctor, soon to be known as Dr Silly Socks as he always wore cartoon character socks things like that can make such a difference. Caroline had a mould done of her head and then a plastic mask made which would be marked up so the radiographers would know what position to put her in when she was having the treatment. A week later we went back for the first session, when we walked in people thought it was me or John having the treatment when they realised it was Caroline they didn’t know what to say, one lady burst into tears. Caroline had to go into this huge cold room and lay on a flat table and put her face into the mask and stay as still as possible, it only took a few minutes but I couldn’t stay and hold her hand I had to go with the nurses in another room, I felt so useless and cruel leaving her on her own.

The first couple of sessions went well, no side effects, but then it happened within half an hour of the treatment she would be violently sick usually in the car going home, and it went on for several hours, and just as she was beginning to feel better, we had to take her back for more. She started to get burn marks down her chin and neck from the radiotherapy and then of course her hair started to come out in big chunks and she started to look so very ill, the weight just fell off her; she couldn’t eat as her mouth was full of mouth ulcers. How she survived all this is just unbelievable. She was such a brave little girl. The weeks rolled on we had some wonderful help from people we hardly knew, the local priest Father Richard was wonderful taking us to Birmingham at least once a week, some of the mums from school did the driving too . The treatment was finally over and the daily trips up the M6, perhaps life would become more normal.

We had a long hard battle trying to build her strength back up, in fact she is still very lacking in energy, but she wanted to get back to school. This was just the start of some of the bullying over the years she had to endure, junior school wasn’t too bad there were some instances which will stay with me, Caroline wanted to go on a school trip she was still quite poorly at the time it was only for a day and I had been on many trips before as a helper but they said I couldn’t go this time, Caroline didn’t want to go on her own she was too frightened in case she was ill. One of the mums (who had three healthy children) said “it’s a bit of a waste of time for her to go really” what a horrible thing to say. The other upset at junior school was on sports day we asked if Caroline could be excused as she found it humiliating her co ordination had been poor since the op, and she felt stupid and it really upset her, we were told if one child was excused it wasn’t fair on the others. She was the only one just getting over cancer treatment. (Oh the list is endless)

Secondary School was a nightmare for her from start to finish. Caroline has dyslexia (which runs in my family and was made worse by the radiotherapy) she found it very difficult to make friends she couldn’t keep up with her peer group and was constantly having her wig pulled off at break times. She did try the school bus but found it very frightening and couldn’t cope with the noise and the name calling. I used to drive her the 12 mile round trip. One day things had got so bad at school that she tried to walk the 6 miles home along a country road with no path fortunately a teacher was going in late that morning and spotted her and picked her up, she was in a terrible state when I got there.

College was a bit happier for her it was an agricultural college and she enjoyed working with the animals etc. She was still was a victim of bullying one night on the college bus a boy poured a packet of crisps over her new wig that she was so pleased with and another boy filmed it on his mobile phone. The police were involved in this incident it was just one too many.

Caroline worked for two years part-time as a trainee florist which she quite enjoyed unfortunately this finished in September. At the moment she is doing voluntary work at the local hospital making teas at a clinic and is doing adult education classes in English and Maths. She is hoping to start a work placement at HobbyCraft shortly as she really enjoys doing crafts.

Caroline still has to endure hospital visits and scans, and developed epilepsy four years ago (this thankfully it is well controlled with medication) she will have be on medication for the rest of her life, and unfortunately her hair never did grow back and this is a cruel and constant reminder of her illness and restricts her in so many ways. Despite all this she is enjoying life at the moment, and compared to some families we are really so very lucky we are still together as a family”.

Earlier this year a friend told us about a hair replacement system they had seen on TV, after searching on the internet I found the site for WHITE CLIFFS it looked really good and Caroline thought it might be the answer to her prayers, to have hair that she could go swimming in, to have hair in the mornings and not to worry about wigs coming off would be wonderful, so we made a few enquiries, we found out that WHITE CLIFFS have a foundation and they would provide hair systems to people who have lost their hair through health problems. We completed the forms and told them all about Caroline’s health, our financial circumstances and how she lost her hair. In April we had a surprise call to say that Caroline had been chosen to receive one of their hair systems, they had noticed that it would be Caroline’s 21st birthday on the 30th April and they would like it to be a surprise for her! Could we keep it a secret? How we managed to I don’t know but we did. We told her the day before her birthday that we were going to London to see Joseph the musical and that we had to collect the tickets from an office near London Bridge, when we arrived at the “Green Door” near the underground she noticed the WHITE CLIFFS sign and became a bit suspicious!

We arrived at reception we were greeted by all the friendly people at WHITE CLIFFS. When they told Caroline she would be receiving a system she laughed and cried at the same time and really couldn’t believe it. We were given tickets for Joseph AND tickets for Dancing on Ice at the 02 provided by Teens Unite we couldn’t believe it, it was almost too much to take in. They had even got her a birthday cake, what a 21st it was, out of this world.

Caroline was taken into a side room and we were explained what would happen, a mould was taken of her head and hair colour etc. was discussed. We were told it would take about 6-8 weeks so she started counting the days.

At last the long awaited phone call, the hair was ready. We travelled down to London, what would it be like? Would she like it? I kept saying “now don’t be too disappointed if it’s not quite right!” No need to have worried after styling etc it was BRILLIANT, just like her own hair and for the first time in years she had a hairline and she could have a style without a fringe, which she always wanted. The photographer was there and took loads of pictures of her and her new hair.

THE HAIR is unbelievable; it really is as good as they said it would be! She’s showered and washed it and it just seems to spring back into shape, even when she gets up in the morning it’s not knotty (looks better than mine does!) She lets it dry naturally then finishes with the dryer and then the straightners.

Caroline was almost frightened to sleep in it, but in the morning it was just as good. People that have seen it can’t believe how real it looks; everyone keeps touching it and looking at the hairline. For us- mum and dad it is so strange to see Caroline coming down for breakfast “with hair” even we forget it’s not her own. Caroline finds it strange having a shower and washing it herself after so long without hair. She’s found it very easy to style and has spent a fortune on hair accessories!

If only she had this hair system when she was at school things might have been a bit easier. Caroline still can’t believe it and thinks it’s all a big dream! Thank you all so much at WHITE CLIFFS for being so very thoughtful and for making her so very HAPPY!

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