Harriet

Alfie was diagnosed with acute lymphoblastic leukaemia [ALL] in August 2012 when he was twenty-two months old. Alfie is now aged 4 and is on the final or maintenance stage of his treatment and is due to complete it by early 2016. About a year ago, Alfie had a high temperature and after tests he was diagnosed with influenza B. He was treated with IV antibiotics and recovered well and was sent home after a week. He did not developed secondary infections. Before his diagnosis of influenza B, Alfie was already on two prophylactic antibiotics; nitrofurantoin every day and on septrin twice a week.

Alfie was diagnosed with acute lymphoblastic leukaemia [ALL] in August 2012 when he was twenty-two months old. He is currently on the final or maintenance stage of his treatment and is due to complete it by early 2016. At this stage his chemotherapy is administered orally and mostly at home and once a month they go to hospital for IV chemotherapy and every three months for an IT methotrexate where they put the chemotherapy into his spine. For five days of every month he is given steroids. Harriet explains that at present one of the biggest side effects comes from the steroids, which make Alfie tearful and agitated and hungry but unable to make decisions. Every Friday, he has methotrexate orally at home which makes him very lethargic.

Alfie has been fortunate not to have had serious infections during the course of his treatment, such as pneumonia. But early on into his treatment, he developed a urinary tract infection (UTI). He is on two prophylactic antibiotics; nitrofurantoin every day and on septrin twice a week to keep UTI and pneumonia at bay. With regard to antibiotics use, Harriet explains that Alfie needs them. She doesn’t question their use but she would be more reluctant to give them to her younger son if he had a cold or other viral infection because he has no underlying health issue.

Harriet and her husband have explained ALL to Alfie in an age-appropriate way by saying that his blood is not doing what it should and hence the need for all his treatments. The thing that Alfie hates the most is to have his blood taken through his port-cath that happens weekly.

Harriet and her husband work together to give Alfie his medications at home. Harriet has found it easier to give medications at night, unless otherwise indicated by the care team. She finds there is less chance of missing something.

About a year ago, Alfie was diagnosed with influenza B and had a high temperature. His parents took him straight to the hospital like in other occasions when he had also developed a high temperature. Alfie had his blood checked and they started him on IV antibiotics while waiting for the lab results. Like other times when Alfie had been in hospital, he has his own room and his chemotherapy treatment stopped until the infection was sorted. After two days, his temperature went down and within a couple of days he became well again and after seven days he was sent home. Harriet said that the only long-term effect of his influenza was a lingering horrible cough that lasted for about a month afterwards.

Harriet has great trust in the care team that looks after Alfie and has felt much supported by his oncologist nurse and the team in general. This has helped communication between healthcare professionals and the family as well as treatment decisions.

At the time of Alfie’s diagnosis with ALL Harriet was pregnant with her second son and said that the whole period was very tough. But Harriet and her husband have enjoyed the emotional and practical support of the wider family and of friends. When Alfie was diagnosed, Harriet’s mother took a year off from work to support them.

Harriet said that early on during treatment she and her husband were advice of the importance of bringing their younger son to hospital appointments and hospital visits for the little one to feel he was part of it. She feels it was very good advice.

It was important to Harriet that the doctors told her Alfie had influenza which made her realise it was more serious than a cold.

Age at interview 31

Gender Female

Although Harriet worries about antibiotic resistance, antibiotics are vital in keeping Alfie well enough to complete his chemotherapy treatment.

Age at interview 31

Gender Female

Harriet explains that, particularly during the winter months, she doesn’t take Alfie to busy public places where there are lots of children.

Age at interview 31

Gender Female

Alfie is immunosuppressed and would frequently get a temperature and need to go to hospital immediately.

Age at interview 31

Gender Female

Harriet believes Alfie’s newborn baby brother picked up on the stress she was feeling. She had to stop breastfeeding earlier than she would have wanted because she was in hospital with Alfie.

Age at interview 31

Gender Female

Harriet was worried by the Alfie’s diagnosis of influenza B until the nurse explained what it was. She says influenza sounds much more scary than flu.

Age at interview 31

Gender Female

Harriet has never questioned the need to give Alfie antibiotics. She believes they have been crucial to his well- being and prevent him from developing complications.

Age at interview 31

Gender Female

Harriet has a very different approach to Alfie and his younger brother taking antibiotics when they have flu or flu-like illness.

Age at interview 31

Gender Female

One of Alfie’s flu-like symptoms was that he slept a lot during the day, which was highly unusual for him.

Age at interview 31

Gender Female

Harriet says Alfie’s oncology team are amazing’ and seem to know everything. They keep Harriet and her husband informed and treat them, rightly, as the most important people in Alfie’s life.

Age at interview 31

Gender Female