Cara’s Story

Cara was 10½ when she was diagnosed with aplastic anaemia in 1981. Here is her story:

It was 6th February 1981 and I was 10½ when I was sent by my GP to my local hospital for blood tests – I had gone to the doctor with lots of small blood spots on my shins. After the first blood tests my platelet levels were just 16,000 and I was diagnosed with idiopathic thrombocytopenia. I was started on high dose steroids. However, over the following days, I was experiencing gum bleeds, blood blisters on my tongue and my nose was bleeding so much it had to be packed!  I was admitted to my local hospital for a blood transfusion on 27th February, by which time my platelet levels had fallen to 10,000 and aplastic anaemia was confirmed.

Luckily for me, the paediatric consultant at my local hospital knew the sister on the transplant ward at Westminster Children’s Hospital (which no longer exists). In 1981, this was one of the few hospitals which specialised in bone marrow transplants for children. Indeed, in 1981 bone marrow transplants were in the early stages of development and not many had been carried out. A transplant was the only treatment – and the only cure – for aplastic anaemia then.

I arrived in WCH on 6th March and went straight into reverse barrier nursing. This was all alien to me and my family. I had never been ill before. So having to stay in a room the size of a prison cell and have all visitors dress up in gloves, little plastic bootees, gowns, masks and hats before they came into my room was very strange. Everything that came into my room, whether it was clothing, books, cuddly toys or food had to go through a special treatment procedure called gamma rays, so it was properly disinfected and did not give me any infections. My immune system was so low that I was very prone to catching infection; only a nurse and one visitor were allowed in my room at any one time. A lot of the food I was given tasted disgusting because of this treatment procedure – although I remember that strawberry yoghurt was still nice! And my Mum peeled grapes for me!! It’s strange the things you remember.

My parents and my elder brother were all tested to see if they were a match as a donor and I was one of the lucky ones – my brother was a 100% match, both MLR and HLA. He had ½ litre of bone marrow extracted and my transplant took place on 29th March 1981 – Mother’s Day!

Post-transplant was a very rough time, with lots of infections, kidney failure and problems with GVHD. When I was diagnosed, my Mum had started driving lessons, knowing that I would not be able to use public transport when I was out of hospital. She passed her test at the end of April. Throughout my stay in hospital, I was visited regularly by school friends, neighbours and relatives.  I even had a visit from the Royal Marines who landed via ropes from a helicopter on the roof of the hospital. I had two weekends at home when I was well enough before I was finally “let out” and went home for good on 3rd June.

However, despite it only being a three month hospital stay for my transplant, it took a long time for my immune system to recover. I had gammaglobulin injections in my bum for six months to help this. It also transpired that the kidney failure I had suffered in hospital had caused a resulting hearing loss and I now wear hearing aids. I had to get used to those before I went back to school. I had to wait until 18th January 1982 before I was given the all-clear to return to school – thus, I was off school for 11 months, 12 days in total.

I have to admit it was difficult returning to school. I had missed the last six months of primary school and the first six months of secondary school. All my old friends had made new friends and formed their new groups; girls being girls, none of them wanted to let me in. It was a very difficult time. But it all worked out in the end. I passed seven O-levels and went onto college and passed one more O-level and one A-level. I then qualified as a Legal Executive and have been working as a Legal Executive (doing the same work as a solicitor) for the last 25 years.

I have lived a fulfilling life – skiing every year, travelling regularly, living independently. Having been “signed off” by the Hospital after five years (initially I saw them six-monthly and then annually) I have never looked back.

I want you to know there is light at the end of the tunnel. Remember, my transplant was in the early stages of the development of treatment and I am here, enjoying life to the full. You can also. Don’t ever give up hope.