Life-changing care, why a comprehensive children's hospital provides the best care for families

Annabelle was diagnosed with acute myeloid leukaemia (AML) in November 2014, just before her 5th birthday. An aggressive form of cancer, AML progresses quickly and requires immediate treatment. Her parents had little time to process the diagnosis before finding themselves living in hospital, trying to balance work commitments and looking after Annabelle's siblings, while Annabelle had 4 rounds of intensive chemotherapy and afterwards was at Evelina London Children's Hospital for urgent treatment of a resulting heart condition.

After being unwell with cold and flu symptoms for many months, Annabelle's parents grew concerned that she was not recovering from minor illnesses like other children her age. A blood test revealed abnormalities which led to a diagnosis of cancer at her local hospital and swift admission to The Royal Marsden for specialist cancer treatment that same day.

Annabelle's dad, Steven, explains: "After the initial diagnosis we were in shock but we had at least been initially told that Annabelle had a less aggressive form of leukaemia. We knew we would be called to take Annabelle to The Royal Marsden but didn't expect a call that same evening asking us to come immediately. Arriving late at night in the rain, it was daunting for us all. At 1am we were taken to a room with a box of tissues and knew that wasn't a good sign. To then hear that Annabelle had in fact the more aggressive acute myeloid leukaemia, which had a much worse prognosis, was very difficult to process."

Annabelle underwent chemotherapy over a number of weeks at The Royal Marsden, where she spent Christmas morning, before being able to go home just for the afternoon. After readmission due to complications with her feeding tube, Annabelle was discharged after final treatment in February 2015. Throughout Annabelle's treatment she was dealing with the side effects from the chemotherapy medicine.

Steven continues:

It was May, Annabelle's hair was growing back and we were starting to return to some form of normality. Annabelle was struggling to sleep so I was laying with her, with my head on her chest. I noticed that her heart was pounding as if she'd just run 100 metres for a bus. Not what you would expect of a child laying down at bedtime.

Annabelle went back to The Royal Marsden and was seen there by an Evelina London echo physiologist, an expert in heart scanning. Annabelle's heart had first been scanned at the beginning of her treatment as part of the UK's only paediatric cardio-oncology service offering regular, consultant-led clinics specifically for paediatric cardio-oncology patients.

One of the most commonly used and effective types of treatment for childhood cancer, called anthracyclines, is used to treat approximately 70% of childhood cancers. While it is very effective at treating cancer, it can cause damage to the muscle of the heart and make it weaker. This is called cardiomyopathy. Through regular clinics at The Royal Marsden and outpatient clinics at Evelina London Children's Hospital, Evelina London's cardiology experts make sure that hundreds of children each year get timely cardiac assessments, diagnoses and treatments.

The heart scan at The Royal Marsden was on a Friday afternoon before a Bank Holiday weekend, and while Annabelle's parents were told that there was a serious problem with her heart, they had to wait until the following Tuesday for an appointment at Evelina London for full diagnosis. Annabelle was seen as soon as possible by Evelina London's Dr Sujeev Mathur, consultant paediatric cardiology, and diagnosed with anthracycline induced cardiomyopathy.

Dr Mathur says: "We had performed a baseline scan on Annabelle as is our protocol in December 2014, just after she had started cancer treatment. Ideally, we like to do this before treatment starts but sometimes the logistics of multiple sites and the urgency of starting treatment for children with an aggressive form of cancer makes this challenging. Annabelle's subsequent scan in May 2015 showed abnormalities and, thanks to the clinic we run at The Royal Marsden, we were able to get her to Evelina London as quickly as possible."

Annabelle's heart was working at less than half its normal efficiency, a recognised complication of treatment with anthracyclines. She received treatment at Evelina London for over 9 months. The degree to which Annabelle's heart function had been affected meant she needed close supervision, both in hospital and as an outpatient. After months of closely monitored therapy and cardiac medicines, her heart function returned to a normal range.

Dr Mathur continues:

Annabelle is rare in displaying almost immediate symptoms after cancer treatment but her story underlines the real need for close supervision of children with cancer to make sure we lessen the life-long impact of cancer treatment. I care passionately about children with cancer getting the holistic care and treatment they need from a multi-disciplinary team of specialists.

"When a child is diagnosed with cancer we must also minimise the risk of long-term damage to other organs, particularly the heart. Guidelines recommend we continue to monitor children closely for up to 20 years after their treatment, and then every 5 years for the rest of their lives. This is why specialist cardiac clinics like ours are essential for monitoring heart health and detect problems as quickly as possible."

Now a thriving and sporty 13-year-old, Annabelle enjoys football and netball. Although she will require care for her heart condition for life, it doesn't hold her back. She will continue to be under the care of Evelina London until she is 16, when she will transition to the closely linked adult cardiac service in Guy's and St Thomas' NHS Foundation Trust where there is a cardiologist specialising in cardio-oncology. 

Steven reflects on their care and what it might have been like to receive care in a comprehensive children's hospital: "Although we received outstanding care as part of Annabelle's cancer treatment, it would have been so much easier had it all been under the same roof. When you spend weeks and months with a child in hospital, you want to do all you can to make their space a home from home. My wife and I did all we could to make Annabelle's room comfortable with pictures on the walls, toys, cushions, throws but each time we moved it was an upheaval that had a physiological impact. When Annabelle needed a procedure during her cancer treatment we had to travel to another children's hospital. When she was so vulnerable, with the chemotherapy having killed off all white blood cells we didn't want to put her at risk. It was actually pretty traumatic to face a journey with her, we didn't want to come into contact with anyone and would have done anything to have avoided that risk."

To have all the services under one roof would have made all the difference to us. When you have a child that is so ill, every moment is precious. When Annabelle was being treated at Evelina London for her heart condition it was so reassuring, we knew they had all the skills in one place.

Names in this story have been changed to respect the family's right to anonymity.