Emily's story - part 1

Emily had just turned 18 and was at college studying fashion when she started with pains in her chest. She was a black belt at karate; lived every spare moment either at karate or the gym, and had just finished training as a studio and gym instructor, so at first everyone assumed that she had injured herself somehow. Over 6 weeks the pain got progressively worse. She couldn’t eat or sleep and was exhausted. Thankfully our GP recognised this was more than a pulled muscle, and after numerous doctor and hospital visits, was concerned enough to ask a haematologist to look at her blood results. By the time Emily was finally diagnosed with leukaemia she needed treatment urgently and was admitted to hospital straight away.

Emily took her diagnosis amazingly well – I think the relief of finally getting some strong pain relief and a diagnosis outweighed the shock, and she had seen a close friend of mine go through cancer treatment and out the other side, so she had a pretty positive perspective on it.

We had to make a decision immediately where Emily would be treated, as chemo needed to start the next day. Normally she would have been transferred to Leeds, but the cancer unit at Castle Hill was just a few minutes away from where we lived and could do the same treatment, and as Emily was going to spend most of the next 6 months in hospital in a room on her own, she wanted to stay nearer home, family, and friends.

Initially, we were told the prognosis was good, and that Emily would need 2 years of treatment, the first 6 months being very intensive, but then a few days into treatment we were told there was a change in plan, as she had something called the Philadelphia Chromosome. That meant that the prognosis had changed, and she would now need a bone marrow transplant.

Unfortunately, Emily had no brothers or sisters, who would have been the most likely match for a transplant, so a donor had to be found. The plan now was to keep the leukaemia at bay, and Emily as strong as possible, so that when a match was found she could have the transplant.

Emily handled her first month of chemo relatively well. She was constantly sick; dropped yet more weight; each day as they tried to take her blood it was a challenge as her veins just wouldn’t work; she hated being so weak and tired and confined to her room; but as she had been so fit and strong before getting ill, her body medically handled it well.

Her second month started almost immediately after, with a break of just a couple of days, where she managed to escape her hospital room for a few precious days at home, before starting all over again.

That’s when it all started to really go wrong.

Her second round of treatment hit her hard. By now she had to have a Hickman line in (a permanent IV line that runs into the chest), which at least made the daily access to her veins easier, but Emily absolutely hated it.

Her body wasn’t coping so well, and they had to stop or reduce some of the drugs and chemo as her liver and kidneys weren’t able to process it all. One night as she was going to the bathroom, she collapsed. Thankfully I had been with her as she was so weak by now, that I managed to break her fall and hit the emergency buzzer, but by the next morning we knew something serious was happening.