The impact of diagnosis on ALL

Louise Green explains how nothing could have prepared her son, Michael, and the rest of the family for the impact of Michael’s diagnosis of Acute Lymphoblastic Leukaemia in the winter of 2006. 

Michael
Up until early 2006, when Michael was four and a half, his life had been fairly comfortable, but this was soon to change drastically. He had appeared to suffer less often from common childhood colds and coughs than friends and cousins. However, having grown paler, thinner, frequently bruised and generally more prone to infections over a few months, it became clear to our GP, when Michael could barely walk and his breathing had become difficult, that something was seriously wrong. 

After diagnosis at the Oxford Children’s Hospital, treatment was started immediately. Within a few days, he could no longer walk at all and only regained the ability over three months later. Constantly hungry and emotional, partly owing to high doses of steroids, Michael felt miserable, uncomfortable and often exhausted. Though it was not necessary to stay in hospital beyond the first two weeks, we were there most days for the first month of treatment and Michael had day-care frequently. This and later intense periods of chemotherapy and steroid treatment, as well as the numerous unplanned visits to hospital when Michael’s temperature was high, led to considerable isolation from normal life and the activities Michael had enjoyed prior to diagnosis. Of particular significance was the fact that he had to spend his fifth birthday in an isolation ward owing to suspected chicken pox.

Parents
Diagnosis impacted heavily on us through essential changes to our lifestyles and constant fear of what might happen. As his mother, I had been expecting to return to work when Michael was to start full time at school. However, a child with leukaemia needs constant love, care and attention, as well as someone to accompany him to hospital, so this was no longer possible. Naturally, there were financial implications as we also had to buy a second car to cover hospital visits. Fortunately, Michael’s father’s employers were considerate and allowed him to take as much time off work as necessary during that early period of treatment.

Extended family, friends and school
Although seeing family and friends provided a great boost to Michael, we had to ask them to stay away whenever they were unwell, to avoid passing on infection to him, particularly when his blood count was low. In reality, this proved to be quite often, particularly during winter months when there were plenty of coughs and colds around. In addition, as Michael has not previously had chicken pox, whenever there was a contact with the virus or somebody at school had it, Michael had to stay away owing to the risk of serious complications.



In theory it was possible for Michael to attend school fairly regularly during the first year of treatment, but a combination of factors, including chicken pox outbreaks in school, frequent hospitalisation and Michael generally feeling unwell while on steroids or other medication, meant that he missed a considerable amount of schooling
during that first year. Nevertheless, this improved considerably and Michael was able to resume his school life, though with regular absences, a year or so after diagnosis.

“For Michael and for us, much of the impact of diagnosis is now happily forgotten and often just seems like a bad dream.”

End of treatment
It is now over four years since Michael was diagnosed and he has been off treatment for nine months. Things have largely returned to normal and he appears to be doing well, although he sees his consultant regularly so that progress can be monitored. Having been unable to swim for the whole period of treatment while he had a Hickman line, Michael is now back in the pool and sea enjoying one of his favourite pastimes. For Michael and for us, much of the impact of diagnosis is now happily forgotten and often just seems like a bad dream.