Lucie’s story
Lucie was a bright, happy, beautiful and mischievous 7 year old.
On the 6th of June 2013 Lucie woke with a really sore head, within 10 minutes it was gone and she was getting ready for school. When I picked her from school her teacher came out and said they had noticed her eye had been a bit squint but seemed better. That evening she was running about full of energy with her friends. The next morning though she woke again with a sore head but this time her balance was off and she was sick but again the headache went but she was still off balance so I made an appointment at our local surgery thinking she had a middle ear infection. The Dr checked her ears which were clear and sent us up to the local childrens ward at the hospital. Lucie started to really deteriorate while we were waiting. They took blood etc then rushed her down for an MRI.
“We would like to raise as much awareness as possible to highlight the symptoms of this deadly cancer. We also want to raise money for paediatric brain tumour research, DIPG research in particular. Hopefully one day soon a cure can be found and families won’t have to go through the heartache we and many other families have gone through”
Myself and Lucie’s Dad were then given the devastating news that Lucie had a brain tumour. Our worlds were turned upside down.
She was then rushed up to The Royal Hospital for Sick Children in Edinburgh where she kept deteriorating. They put her on a high dose of steroids (Dexamethasone) and on the 9th of June we were told the horrendous news that Lucie had DIPG (a tumour in her brainstem), it was inoperable and terminal and we were to expect 6-9 months left with her.
Lucie lost all movement in her right side and was unable to walk or eat. She was fitted with an NG tube and the following week started a 6 week course of radiotherapy and slowly started eating again. She was an absolute star throughout her treatment and worked hard with physio to get her strength back and by the end of her treatment she was able to stand and take a few steps herself.
Lucie was then sent home and we were told to enjoy the next 6 weeks as much as we could. There was no more treatment available and we would go back for an MRI. Things didn’t go to plan and Lucie was rushed back into hospital to get a drain fitted to reduce the pressure in her ventricles. After a few scary days in ICU where Lucie wouldn’t wake up and had a big seizure she finally came round and she got moved to a normal ward. She had lost all her strength again and was unable to walk which was so frustrating for her but she never complained.
Things were up and down from then on, the Dr’s kept trying to take her of her steroids but every time she deteriorated. Finally in November they took her in and fitted a shunt. Within 48 of going in to hospital Lucie was discharged feeling great. She gained strength again but sadly in December progression started to show. After Christmas she was put on palliative care at home. She fought a urine infection, ear infections and chest infections and still never complained.
On February 11th 2014 the monster they call DIPG took her life. She was at home with all her family around. Lucie’s left a very big hole in everyone’s hearts and life for myself, Lucie’s Dad, Sister Ellie and Brothers Steven and Connor will never be the same again. Lucie is our hero and we are so proud of how well she coped with everything and still managed to have a cheeky little smile on her face.
That’s why we’ve teamed up with The Brain Tumour Charity. They do a fabulous job in funding cutting edge research to find a cure for brain tumours, as well as raising awareness and providing support to those affected.
We would like to raise as much awareness as possible to highlight the symptoms of this deadly cancer. We also want to raise money for paediatric brain tumour research, DIPG research in particular. Hopefully one day soon a cure can be found and families won’t have to go through the heartache we and many other families have went through.