My daughter Rachel is the only person in the UK, as far as I know, to have a papillary tumour of the pineal gland. She is one of only about 40 people in the world (the others are mainly from Asia) believed to have this type of brain tumour. For Rachel to have recovered as she has done from this extremely rare condition is nothing short of a miracle, and we put a lot of that down to the fact that I was able to be with her 24 hours a day in the hospital, thanks to The Sick Children’s Trust’s Home from Home accommodation.
Rachel had been a perfectly fit, normal, healthy 12-year-old girl when on
21 September 2011 she was sent home from school with a severe headache. When I went to get her she was walking like a drunk. We went straight to the doctor who sent us to see a neurologist at the local hospital in Bramley, South Yorkshire. She had a C.T. scan and that’s when we found out she had a massive brain tumour. Rachel was transferred to Sheffield Children’s Hospital and had emergency surgery at 8am the following morning.
It was a nightmare. I felt like someone had pulled the rug out from under me. Rachel had only been back at school two weeks after the summer holidays. At the end of August we had been on a family narrow boat holiday with some friends and then Rachel went on to Suffolk on a camping trip. To go from that, and going back to school, to being at death’s door was horrendous. The whole family was devastated – Rachel also has a twin brother Jordan.
For the first couple of nights I slept on a chair by her bed. I had heard from someone on the ward that the charity, The Sick Children’s Trust, offered free accommodation in the hospital to the families of sick children. There was a waiting list to stay at Treetop House, but a few days later, on 26 September I was offered a room. I was very lucky I didn’t have to wait too long. I stayed until Rachel was discharged two months later on 28 November. Unfortunately, I wasn’t so lucky when she was re-admitted in December for a week of radiotherapy treatment - there was no room available and I only had a chair by her bed. I didn’t go home. It was really hard, and I barely slept the whole time, but it reminded me of how much I had appreciated being at Treetop House during her previous stay.
Until you are in that position you can’t believe how much the little things mean to you. To get up in the morning and have a shower is something most of us do every day, so when you can’t do that it is awful. In Treetop House you have got all those facilities that you take for granted at home. I could shower and wash my clothes, I could pop up and make a cup of tea if I wanted to, and make something nice to eat in the kitchen rather than rely on hospital food. It was also wonderful to know there was a place where I could retreat to for half-an-hour or so when Rachel was asleep. And it gave me peace of mind knowing the nurses could call me in my room or in the lounge and I could be back on the ward in a couple of minutes. I live in Bramley, about 20 miles from the hospital, and I use public transport, so it could have taken me about an hour and a half to get back from home.
I believe it also helped Rachel’s recovery immensely, both psychologically and practically, to know that I was always in the hospital. If she needed the bathroom or help to eat I could do that. After one of the surgeries she was left paralysed. She couldn’t sit up unaided and couldn’t get her hand to her mouth. For me to be fully involved in her care, and to ask questions it was much easier being on site with her. I have absolutely no idea how I would have coped if Treetop House had not been there. In the 68 days of her first hospital stay I went home twice.
In those two months, Rachel endured eight neurosurgery operations. She developed hydrocephalus, due to the tumour preventing water draining from her brain, and also suffered headaches, nausea and vomiting. It was debilitating for her, but she was so brave. She never complained and was an absolute treasure.
Mum and dad would come and wait with me in Treetop House when Rachel was in surgery – one operation lasted nearly 13 hours. It was good to get away from the ward and the waiting room and go somewhere private where we could cry together as a family – we never knew if she was coming back or not. I had a couple of nights when the medical staff said, “you had better not go to sleep upstairs tonight”, which puts into context how ill she was.
My son Jordan stayed with me for a couple of nights. It was so nice for us to be together as a family. He found it hard to be at the hospital, to see his sister the way she was, so it was good for him to be able to go to my room. I could get him something to eat and we could sit and watch television. Jordan stayed with family friends while Rachel was in hospital, so that he could continue to go to school, and they would bring him up to see us during the week.
As far as we are aware, there is not another person in the UK who has Rachel’s type of brain tumour. There is nobody I can talk to who can say, “I have had that” or, “we have got through that” or, “we didn’t get through that”. I have joined a couple of forums online but nobody has quite the same thing. But it really helped staying in Treetop House, because even though the other parents had children with very different medical issues, they were going through the same emotions and feelings that I was going through. It was great to sit and chat with them, often over a meal. There were two people in particular with whom I have kept in touch and we have become friends. Treetop House manager Ann and her deputies Nichola and Rachel were also really helpful and supportive. It was so nice to be able to go to them for a chat.
Rachel was allowed to visit Treetop House in a wheelchair in the last couple of weeks she was there. She loved my room and it was great for her to get away from the ward. She is back at home now and has finished her treatment but she needs an MRI scan every three months. Surgeons removed 95 per cent of the tumour and she has had intensive head and spinal radiotherapy to kill off the rest. It would appear on the initial post treatment scan that the tumour has all gone, which is very encouraging, but they won’t say for sure until a few more scans down the road.
We are now watching and waiting to see how much she will improve. The tumour caused damage and the radiotherapy caused further damage, which has raised new problems. But Rachel is amazing. She has gone back to school for two afternoons a week and we are hoping to increase that.
We have had so much support from Rachel’s school - she is in Year 8 at Wickersley School near Rotherham – which has been fundraising for us. We have a plan that once she has finished her treatment we want a nice holiday. Rachel would really like to go to Australia – how feasible that will be I have no idea. It won’t be until at least next year as she is not allowed to fly yet. We also want to raise money for charities, including The Sick Children’s Trust. Her school friend Lydia handmade 200 Christmas cards, which we sold through local coffee shops, and raised £100 for the charity. They both handed over the money to the staff at Treetop House, which was brilliant. I am a paramedic but I haven’t been to work since September. My work colleagues have also been fundraising for The Sick Children’s Trust. The charity is amazing and it was a privilege for me and my family to have stayed in one of their Homes from Home.
Beverley Hirst, Rachel’s mum
