Bethany

Beth
There aren’t many things in this world that make the majority of us realise how lucky we really are. For me, the experience that made me stop taking the small things for granted was seeing my boyfriend’s two-year-old daughter go through her battle with leukaemia.

This story is not meant to be an exact account of the medical treatment that Bethany was given. It is an account of the emotional experience of being a part of a relationship with someone who, despite everything that is happening to them, remains positive.

I don’t think that I will ever meet anyone like Beth again. She was always a happy child, despite having spent most of her life in hospital. Perhaps it was a blessing that she was so young when she was diagnosed, so that she could never fully comprehend that she was different from other people. She would charm anyone who ever met her. Having spent more time around adults due to being in isolation for much of the time, and also not having been able to mix with other children post transplant, she was confident around anyone that she met.

It may be a cliché to say that seeing sick children makes you realise how lucky you are to have your health. But it’s true. It’s devastating to sit in a hospital full of children who take it as the norm to have blood tests, to be given drugs, to have their sats constantly monitored. One night I stayed at the hospital on a ward full of babies because there was no room on the children’s ward. Every hour you would hear the babies start screaming because they had been woken by nurses taking their blood pressure. You feel like you’re sleeping in a torture chamber. That’s no reflection on the nurses, they were all wonderful, and I admire them for being able to do the job that they do.

Bethany had to have a stem cell transplant to try to cure her of leukaemia. This involved her immune system being killed off by chemotherapy, and her father’s stem cells being implanted into her body to take over. Stem cells are the cells that every other cell in our body grow from. Chemotherapy basically poisons the patient’s immune system, and kills off their cells, in killing off the cells, the cancer cells are killed off with them. The goal was to get Bethany to have one hundred percent of her dad’s cells, and none of her own. That way the leukaemia couldn’t come back. When I say that chemotherapy is poison, I’m not exaggerating. Seeing someone who is undergoing intensive chemo is awful. The side effects are endless. For Beth, vomiting, mouth sores, food all tasting the same, loss of hair and much more would be a constant for the next year. It’s bad enough to see an adult go through this, let alone a child. At one point she had lost so much weight that we had to buy her braces to stop her trousers falling down. She didn’t look like a little girl anymore, more like a little ghost.

The stem cell harvest is very different from a bone marrow harvest. It’s not an operation, and doesn’t involve a general anaesthetic, it’s more like being on a kind of dialysis machine. Before the harvest the donor is given a course of injections of a drug called GCSF. This makes the body overproduce stem cells. They are painful, and make the donor feel fluey, and have back pains. Beth’s dad always used to say that it didn’t matter how much it hurt him, it was much worse for Beth so he’d never complain. After a test to see whether the GCSF had done its job, the stem cells are collected. The donor is connected to a machine and a canula is inserted into each arm. One takes the blood out of the donor’s body and into the machine that harvests the cells, the other takes the blood back in. After about five hours, you have around half a pint of stem cells. The cells are then delivered to the patient.

One of the things that the hospital do with cancer patients is they fit a central line. This is a tube going into a patient’s chest, which allows the doctors and nurses to either take blood or give medication intravenously. Bethany also had a gastro-nasal tube which was taped to her face. This would make it easy for people to see that Beth was unwell in some way. It was hard not to be touchy about people looking at her. To us she was perfectly normal, but people would stare at her in shops because they knew that there was something ‘wrong’. It also made other children timid around her.

There were times when Bethany was so violently sick that she would throw up her tube. At first we would take her to the hospital to have it re-inserted, but after a while, Beth’s dad learned how to do it himself. It was always a traumatic experience. Someone would have to practically hold Beth down while he inserted the tube. She would be screaming and crying the whole time. Sometimes we would get her to count ‘see how quickly daddy can do it, Beth’. You never get used to these things. Each time is just as bad as the last. Her dad would feel so guilty. He knew that he had to do it, but it would still make him feel that he was hurting his little girl, and would worry that she wouldn’t understand why he was doing it.

If Beth ever refused to take her medicine, which she did, she must have been so fed up of the cocktail of medicines that she had to take. We would have to put it down her tube. Flushing the tube afterwards was always a good game to Beth, it was difficult to try to get her to stop syringing water into it. Sometimes you would forget how abnormal it was for a two-year-old child to be experienced in these kind of things but every so often it would hit you. Life is so unfair sometimes.
At one time all Beth seemed to be interested in eating was cherry tomatoes. With a ‘normal’ child you would make them sit and eat all of their dinner. With Beth, we were pleased if she was eating anything. If it was cherry tomatoes she wanted, it was cherry tomatoes she got. I remember one specific meal where we made her about four different dishes in an attempt to interest her in eating something. If you didn’t get the food in front of her two seconds after she’d asked for it, she had gone off it. But we had to try.

Because Beth had lost so much weight and it was difficult to get her to eat the doctor’s put her on overnight milk feeds. This was packed with calories to try and make her put on weight. We would wait until she had gone to sleep and then connect her gastro-nasal tube to the milk pump. During the night the line would get obstructed and an alarm would go off so that someone could go and find out what the problem was and re-set the pump. This meant many sleepless nights for everyone. Beth wouldn’t wake up to the alarm, she was far to used to them and luckily she was quite a heavy sleeper. The milk didn’t always work. Often, no sooner than it had gone down, it would come straight back up.

As Beth’s cells had not gone up to one hundred percent within the first three months or so after the transplant, the doctors decided that they’d have to do another transplant. Fortunately this didn’t mean that Beth had to go into isolation again, but it was still a worry to us all. Post transplant the patient feels extremely unsettled. Bethany would be very fussy about who she wanted around her at these times. We would all find ourselves in and out Beth’s good books, but her definite favourites were mummy and nanny. Sometimes you couldn’t get her interested in anything. As a reaction to the transplant her hands and feet went dry, the skin would flake off and to make things worse, Beth would pick at the flaky skin. We would all spend hours massaging cream into her hands and feet. She would sit on her bean bag in front of the TV saying ‘massage, pappy!’, or nanny, or whoever was in favour at the time.

However hard it was, Beth had always astounded the doctor’s with how well she had done. Especially since this was the most rare form of leukaemia.
I remember just after the second transplant, Beth’s dad and I decided to take her to the seaside. She had never been to a beach before and we thought that it would be a nice change of scenery. We arrived at Beth’s house to pick her up and it became clear that she was not having the best of days. When she realised that mummy wasn’t going to come with us she started crying. This was fairly normal, and we didn’t think anything of it at first. But she didn’t stop. It was heartbreaking to hear her screaming pretty much all the way down to Norfolk. We tried everything to stop her from crying, but to no avail. When we finally did get to the beach, she showed little interest in the sea, and didn’t want to walk on the sand. We did manage to peak her interest by collecting some shells for mummy and nanny and putting them in her pockets. Towards the afternoon she perked up and we had a nice time walking along the quayside eating fish and chips and looking at the crabs that people had caught. Walking back to the car we blew giant bubbles for her with a special bubble maker. Beth loved bubbles. I think we bought every type of bubble maker in existence.

You may think that after the second transplant, which worked, it would be plain sailing. That’s far from the truth. Beth was prone to chest infections. She would have coughs constantly. She would stay at our house and our sleep would be constantly interrupted by her coughing fits. We would be woken every couple of hours by the sound of her almost choking. I would rush into her bedroom and sit her up in bed to try to clear her chest. Her wispy blond hair would be damp with sweat and her little face flushed red. She really was the most beautiful little girl. I know I’m biased but I have never seen such a lovely little girl. She had the reddest lips and the sweetest smile.

Patients who have been in isolation are allowed to mix with adults outside their family before they are allowed to mix with other children. This is because of all the bugs that kids pick up at nurseries and playgroups. When Beth was given the go-ahead to play with other children one of the first kids she’d play with was her cousin Christopher. Beth was as bold as brass with Christopher, but he was really shy around her. As I mentioned before, I believe that this was to do with her gastro-nasal tube. While we were used to it, to a three-year-old this was something new and alien. Obviously he had never seen anything like this and was aware that there was something different about Beth. It’s funny how his behaviour mirrored so many adults; he would look at her with a naïve intrigue.

Many of the adults that Bethany came into contact with would behave in the same way. I can remember taking her down to the park with her dad and an older couple coming along while we were pushing Beth on the swings. The swings were her favourite, she would want to be pushed for hours, giggling all the time with the wind rushing through her hair. They asked us what was wrong with her. Her father explained that she had leukaemia, but that she was getting through it. There are some people who would just stare, without asking. This couple were different. It seems that they had more courage. It wasn’t pity… it was empathy. They listened while Bethany’s dad explained her condition and then wished us all well. I don’t think I’ll ever forget them. As I said, they showed more courage than your average person.

One of the happiest memories of the whole experience was when Bethany went to have her central line out. I went with Beth’s mum to the hospital. It’s never easy to deal with your child going under a general anaesthetic, no matter how many times you’ve seen it done. As the doctor’s always say, with any general anaesthetic, there is a risk. Obviously, before the operation, Beth had to be nil by mouth. Try explaining to a three-year-old child why they can’t have any breakfast. She was asking for food all morning, and didn’t go into theatre until about one o clock, we couldn’t even give her a drink. As ever with kids, the best way to deal with this was distraction. We drew some pictures and told her that it wouldn’t be long until she’d had her ‘wiggly’ out. This was quite and exciting prospect for Beth. The ‘wiggly’ was sewn in to her chest, the operation would hopefully just be a small incision as long as there weren’t any complications.

We told her that when she’d had her wiggly out she would be able to go swimming. Beth had always been crazy about water but hadn’t been able to go swimming because of the risk of infection. She would want to spend hours in the shower. She had to wear a crop top in the bath or shower so that her central line wouldn’t pull on her chest. I can remember her being in the shower cubicle splashing around like a little duck, her hair soaked and slick to her head. The amount of times I’d say ‘just one more minute and then you’ll have to get out’ but whenever I’d say ‘time to get out’ she’d reply, ‘one more minute!’ It could’ve gone on all night. I’d take her out of the shower and into her bedroom, where I’d dry her with a hairdryer and change her crop top.

The surgeon who was to remove the central line was really lovely. Beth’s mum told me that there are many who talk to parents like they’re idiots. The ‘god complex’. This guy wasn’t like that though. He had a lovely way with children. When Beth’s name was finally called, I went into the anaesthetic room with them. Beth sat on her mummy’s lap, and they put her to sleep with gas. This was the really heart wrenching part. She screamed the place down. Her mum was stroking her head and talking to her the whole time, but she still hated it. I guess she’d been here too many times before. Finally she went limp and was placed on the stretcher. I kissed her goodbye and her mother and I went to sit in the waiting area. These times were really difficult. It’s so hard when you can’t be with your child when they’re going through something like this. I tried to stay positive for Beth’s mum but I must admit, I was worrying myself.

It was such a relief when the nurse came to say that Beth was out of theatre. We went through to see her, she was still drowsy but waking up. The ‘wiggly’ was in a plastic bag on the bed with her and her wound was all dressed. As she came round we gave her some juice to drink and a packet of crisps. She must’ve been starving. As she ate and drank we pointed out to her that her ‘wiggly’ was gone. I said to her ‘look Beth, that nice man took your wiggly out’. For the rest of the day all we heard was ‘look, no more wiggly. What a nice man’. This was a real milestone for everyone. The removal of the central line was one of the last steps to a normal life.

After the operation we gave Beth her ‘wiggly’ in a plastic bag. She really liked that. As she wobbled up the steps to nanny’s front door she was proudly clutching the tube in its plastic bag. She took great delight in showing nanny her bagged ‘wiggly’ and the dressing on her chest.

The first time we took her swimming after she’d had her line out was great. We put her in her little pink Bob the builder swimming costume and armbands. She was a little nervous at first but after about half an hour her confidence had grown. She was jumping off the side of the pool into her mum’s arms. Splashing around and swimming (albeit only a few strokes). Every new thing that we could do with her was a huge milestone for us. It was so good to finally be able to do the things that we’d been longing to do with her. To everyone else, these were simple things. To us they were big steps in a long journey. Every smile, every giggle a delight because she deserved each of them so much.

After a while the visits to the hospital became less frequent. The doctors were pleased, no, amazed with her progress. All her life she had exceeded their expectations. Eventually her mother decided that it was time that she re-entered the real world and got back to work. Beth would be at nursery part time, and with a child minder the rest of the time. Again this may be something that some parents take for granted, but for us it was another huge step.

It must have been daunting for Bethany the first time she went to nursery. She had never mixed with so many children at once before. Her mum started by staying the whole time, but gradually left her for longer periods, until she was comfortable to stay on her own. In the beginning Beth would generally stay with the adults, because that was who she was most used to. But after a while she started mixing with the other children more. Then we started hearing about Jade and Leon, some of her friends from nursery. It was wonderful hearing her talk like a normal three year old, that she was experiencing the things that other kids her age were. Life no longer revolved around hospitals, drugs and doctors. While she was still more prone to infections than other children with each day she was living her life.
When Beth first started nursery she was a little unsettled at night. She would often wake and come into our bedroom. Because it was a difficult period of adjustment we would let her get into bed with us. She would sleep between us and inevitably she would wriggle her way round until her feet were on the pillow and her head facing the bottom of the bed. She would wake up early in the morning, and then decide that it was time that I woke up too. I liked this game. She would peep at me and I would peep back at her. Then I’d close my eyes and pretend that I was asleep again. She’d look at me, deciding what would be the best way to wake me up. Then she’d start whispering in my ear. ‘Clare’ she’d whisper. ‘Clare… I want breakfast’. I’d peep at her again, see her little smiling face and then shut my eyes quickly. We’d play like this for about ten minutes, then I’d concede and get up to start her breakfast. One morning I asked her what she wanted. ‘You can have porridge, or Shreddies’ I said. ‘Frosties’ said Beth. I hadn’t got any Frosties. I told her this but she repeated her request. I explained again, so she came up with a solution for me, ‘you go to the shops’ she said, quite matter of fact, as though explaining something that I was unaware of. After much discussion I managed to get her to settle for some porridge.

Beth’s third Christmas was approaching. Her mother is from Danish descent so she would celebrate Christmas on Christmas Eve. This meant that she could then come to her dad for Christmas day. Planning Christmas for Beth was magical. I think I may have been more excited about it than her. Beth’s dad and I went to Toys R Us to do the shopping. We both got totally carried away. I think we almost bought everything in the shop. On Christmas Eve we put her to bed and then started to prepare the living room. We bought the huge boxes down the stairs and placed them under the tree. When we had finished there was a pile about three times the size of Beth. Then we blew up one hundred balloons. The look on her little face when she came downstairs in the morning made it all worthwhile. She was so excited. It took her hours to open all the presents, every time she opened one she would get distracted by what she’d got, play with it for a while, and then go back to ripping the paper off the next box.

One of the presents that we bought Beth for Christmas was a doll, complete with changing mat and bottles, nappies, wipes, food and all sorts of other paraphernalia. She absolutely loved this. We also bought her a miniature washing machine. She would come to us on a Tuesday and Thursday evening and while I was making the dinner Beth would be in the kitchen with me, putting her doll’s clothes in her little washing machine. These were some of my favourite times with her. Just the two of us, chattering away to each other, each getting on with our individual tasks.

I remember a time when I was sitting in Beth’s nanny’s living room. Beth was playing with her toys and pappy and I were watching TV. ‘Clare’ Beth said, ‘I love you’. I could’ve melted. I hadn’t really thought about whether I wanted children or not before I had met Beth and her dad. I had never been particularly bothered about it, but looking after Beth, getting to know her, seeing her grow had woken up the maternal instincts inside me. I loved her as if she were my own.
I look back on the things that this little girl went through in her short life in awe. When an adult gets diagnosed with cancer, they have to battle with negative thoughts and find the will to survive. They have to find the strength to cope with the treatments. Children do not think that way. They just carry on. I will always find this amazing.

Around ten months after Beth was given the all clear from the doctors at Birmingham Children’s Hospital she contracted a bacterial infection. She went into Northampton General Hospital on the Thursday evening but the infection raced through her body straight to her blood. Because she had no spleen her immune system was too weak to fight and she died on the Friday morning. She was four years old. I can’t even begin to explain the pain and horror that we all felt. Along with the shock, devastation and disbelief. For her to have won her battle with leukaemia, against all the odds and then be snatched away by and infection was too much for any of us to bear. Why? There is no way to explain why a child dies when old people survive. This is where I run out of words.