Millie's story

CLIC Sargent highlighted the impact of cancer on the school life of younger children during Childhood Cancer Awareness Month 2012.

Our research - No Child with Cancer Left Out - identified a range of challenges that children face keeping up with their education and school friends during and after cancer treatment. We do all we can to help - our care professionals aim to support the whole family through treatment.

This is Millie's story. Millie was diagnosed with a brain tumour in 2009.

Millie's story

After her treatment, Millie’s had to learn to walk again. Her sight and hearing were also badly distorted and she struggled with both.

Millie’s mum, Carol talks through the challenges they have faced while supporting Millie through school

Managing school and treatments

"Millie has had fifteen operations and had to take time out of school for each one, so needless to say she has missed a lot. Millie returned to school about two months after her operations for one hour a day.

"Gradually we built up her attendance to two hours a day and then half a day over about six months. She also had radiotherapy on a daily basis so we would try to coordinate this. As treatment progressed, we had to visit the hospital once every week and then once every six weeks she’d go in for four days of chemotherapy.

"Even though she was attending school throughout this time, she wasn’t really learning anything because her memory and concentration levels were affected so badly. Going to school was merely to develop her social skills again and have a daily routine, mixing with other children."

Making friends

"Millie used to be a very switched on and confident child but the whole trauma she has gone through has changed her completely. Initially Millie lost the ability to interact with children on a daily basis and she was unable to play. It has taken a long time but now she does have good friends at school and at home."

Returning to full-time education

"When Millie did eventually go back to full-time education, her concentration and memory hadn’t improved much.

"Her head mistress and our CLIC Sargent nurse arranged for her to have a one-to-one carer within the classroom on a full-time basis. Millie’s head mistress was extremely supportive and insisted that Millie get full-time care. She could see how much she needed it. I was also given the opportunity to meet the lady who would be Millie’s carer and make sure she understood Millie’s needs.

"This continued through year two until Millie was finished at infant school and her head mistress arranged for her carer to move with her to the junior school."

Starting at a new school

"When she started at her new school she had been off chemotherapy for almost 12 months. Her ability to learn was slowly coming back, her balance was improving, as was her sight.

"The Special Needs Development Officer from the Education Board visits Millie once a term and will keep assessing her progress. He has been very helpful suggesting certain aids to help Millie cope better within the classroom.

"In the second term, care hours for Millie were cut to 20 hours a week and the carer role also changed slightly. This was in readiness of Millie becoming independent within the school environment.

"Millie then had another major operation and subsequently missed more of school. Even though the Education Authority were pushing to reduce the hours of care again, it was agreed to leave them at 20 hours until Millie had recovered from her latest operation."

Making cuts to care

"Millie’s hours with the carer were then cut again, since apart from the one glitch with the operation she was improving overall. What soon came to light, which I was annoyed about, was that a proportion of the 14 hours allocated to Millie was used for the carer to look after another child. It was Millie’s funding that was paying for the care of two children.

"By the end of the school term Millie had been in remission 21 months and the Health Authority had no medical grounds to fund her care any further. I really felt that the whole situation was about money and not Millie’s needs. This meant that when Millie went into year four, she had no one-to-one care at all. 

"The head master is very nice man and cares about Millie but he takes his lead form the Education Authority, I very much feel like I’m alone fighting for support for Millie.

"It is very frustrating to think she has gone through so much and now, through no fault of her own, she could fall further behind at school."