The importance of treating children as individuals with unique and complex care needs has been highlighted by the mother of a girl recovering from an aggressive brain tumour.
The importance of treating children as individuals with unique and complex care needs has been highlighted by the mother of a girl recovering from an aggressive brain tumour.
Noemi Drogu’s daughter, Zofeya was just four years old when she started to bump into things and her balance and coordination became less controlled.
After a visit to the GP the family were referred to their local hospital where a scan revealed a walnut-sized medulloblastoma in Zofeya’s brain.
Zofeya underwent immediate surgery which lasted for eight and a half hours and received chemo and radiotherapy.
Noemi captured the first two years after Zofeya’s diagnosis, from her stay in hospital to learning to sing again
Link: https://youtu.be/-CfB-uHO8C8
In the space of a day we went from having a normal child to one that will have care needs for the rest of her life. The only way I can describe it is like there being a tsunami.
But it is the on-going impact cancer has had on Zofeya and her family life, which makes giving the right package of personalised care so important.
“Unless you speak to someone who has been through what you have been through, you don’t really appreciate the impact a brain tumour can have,” explained Noemi.
“On the one hand you are so grateful and pleased your daughter has survived the experience, but when you look around you the life that you had before is in tatters – it’s not recognisable and you have to start to rebuild it again almost from scratch.
After the surgery Zofeya had to learn everything again – how to walk, talk, read and write. This, in turn, has affected her schooling and consequently her friendships with children at school.
“We don’t know yet what all the side effects of the treatments might end up being, because some are so long-term. We were told to expect learning disabilities and that she might never have children. Her hearing is affected, which also makes it harder for her to concentrate and there’s also a high risk of her having another cancer in the future because of her treatment.”
On top of this, was the psychological impact the illness had on Zofeya.
“It is hard for children to understand why they are losing their hair, why they have to keep having scans and needles and why they can’t eat and play like they used to,” explained Noemi.
“Zofeya’s resilience has been astounding. She would be wired up to machines and playing tag down the corridor of the ward. But there have been other occasions where she would be in so much pain she would be crying.
“Having a strong support network around you is vital to help any family get through.
“Addenbrooke’s was really helpful in this way. Her consultant always made the time to explain to us what to expect and answer any questions we had. We were also offered play therapy and music therapy for Zofeya which has helped her to come to terms with her illness, as well as counselling for Zofeya and for the whole family if we needed it.
“Having an illness like this doesn’t just impact the child – it affects the whole family’s lives – in different ways and in different points in time.
Cambridge Children’s will help provide that all round package children and families so desperately need.
Noemi, added: “So often it is not just about the actual illness, it is about the on-going and long-term support both for the child and their families.
“Having a specialised hospital that treats the child as an individual and is there to provide support for the family as well is so important. To be able to access medical care and mental health support all in one place and joined up with the local community is invaluable.
“Research is also so important. Treatments have already come a long way since Zofeya had her brain tumour. If we can do anything to reduce the side effects they have this will have a long term benefits for children life Zofeya throughout the rest of their lives.”
Following the eight-year anniversary of Zofeya's diagnosis, Noemi added:
“The Addenbrookes team has been amazing in supporting us during and after Zofeya’s treatment and recovery. How great would it be to have a specialist children's hospital, tailored for children, an environment created with the whole child at the heart of it. A place with not only the best possible medical treatment but also a place where everyone understands that a child needs more to thrive, recover and to help them through this challenging time and also after treatment. A place where many more kids like Zofeya can be looked after. A place where families find support, specialist care and have professionals working alongside them to help their child through this difficult time and to find a new normal after they leave the immediate treatment.”