Katie had only been at nursery for a few short weeks when she was diagnosed with a brain tumour. Within hours she was undergoing emergency surgery but the tumour, although low-grade, is buried deep within her brain making it inoperable. She has endured 18 months of chemotherapy and three months of specialist radiotherapy in America which proved unsuccessful. Once again she is back on chemo and no-one knows what the future may bring.
“Life is so precious and, for us, fragile. We try not to look too far ahead and cling onto the fact that, with research, every day presents the possibility of better treatment options for Katie in the future. It is vital that we have hope and that we live in the moment but I do find it so incredibly hard to do. One of the biggest changes we have had to make since Katie’s diagnosis is to live with uncertainty, it is awful because nobody can tell us what the future holds.”
Louise Milliken tells her daughter’s story:
Katie wasn’t quite four when she was diagnosed with a brain tumour. Her co-ordination and balance issues had been passed off as nothing serious until, with me in a state of desperation, we were finally referred to a paediatric consultant because a health visitor was concerned about me.
Our second child Charlotte was born in September 2010, just after Katie, who was coming up to her fourth birthday, started at nursery. Charlotte needed treatment for hip dysplasia and Katie was being sick at night for no apparent reason. I was beside myself and relieved when a specialist health visitor referred us to a paediatric consultant. Katie had an MRI in Glasgow on 12th January 2011. My husband Ken and I waited for a long time, much longer than we had been told to expect, and then they broke the news.
Katie had a brain tumour. Cerebral spinal fluid was building up and putting pressure on her brain. We were transferred to a specialist unit for emergency surgery that day. In the space of a few hours our world had changed for ever.
The tumour is low-grade, a juvenile pilocytic astrocytoma deep in the middle of the brain which means it is inoperable. Katie knows there is something in her head which can’t be fixed. The reality is that the tumour will always be here, it is not something which can be dealt with to allow us to move onto the next chapter, we will always have to manage our lives around it.
Since then Katie has endured 18 months of horrible chemotherapy, countless operations, hospital stays and blood and platelet transfusions. There was a welcome albeit brief respite between 2014 and 2016 but Katie’s tumour progressed after that. We travelled to Jacksonville, Florida, for three months of proton beam therapy and we were devastated when we discovered this was unsuccessful. Katie has also had to ensure months in a wheelchair and horrible steroid treatment. She is currently part-way through another 18 month chemotherapy regime.
Throughout it all Katie has been amazing but the tumour has caused irreversible changes. Her balance and co-ordination are poor, she can no longer run and has had to learn to write with her left hand. When she should have been enjoying the typical life of a child, she has been attending hospital for chemo, sickness, infections, blood transfusions, scans, operations and other tests. Despite this she still manages to attend school almost full-time and her positive outlook and chatty nature rubs off on all who get to know her.
Katie is missing out on so much although she has worked so hard to rehabilitate herself and overcome her balance and co-ordination problems. One of the most heartbreaking things for me is seeing children running around and playing with their siblings and having to live with the knowledge that Katie and Charlotte have been robbed of this.
Throughout everything Katie has had the most wonderful support from everyone at Carolside Primary School and we do as much as we can to ensure family life is as typical as possible. Katie is an amazing little girl, she loves to sing and dance and she is the biggest fan of Britain’s Got Talent and X Factor, idolising Louisa Johnson who won in 2016.
The latest chemo regime has caused the tumour to shrink. Katie is back walking again and we feel that our fun-loving daughter has returned. But the good news may only be temporary as no one knows what the future will bring, but we hold on to what we can.
I would do anything I could to make my daughter better, I would take the tumour from her and live with it myself but unfortunately I can do neither. I can run though and that is why I am taking part in this year’s Virgin Money London Marathon for Brain Tumour Research. I have always enjoyed running and now it’s very important to my mental health and I find it extremely therapeutic. My mantra has become “I run because I can” and although I may sometimes feel as if my lungs will explode and my legs will fall off, it’s nothing compared to what Katie is going through.
This will be my first – and probably last – marathon and I hope that people will support me not just in the hope of helping Katie, but for every child who is struck down by a brain tumour. It is horrendous to think that brain tumours kill more children and adults under the age of 40 than any other cancer yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Life is so precious and, for us, fragile. We try not to look too far ahead and cling onto the fact that, with research, every day presents the possibility of better treatment options for Katie in the future. It is vital that we have hope and that we live in the moment but I do find it so incredibly hard to do.
One of the biggest changes we have had to make since Katie’s diagnosis is to live with uncertainty, it is awful because nobody can tell us what the future holds.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you have been inspired by Katie’s story and would like to make a donation to Brain Tumour Research please go to https://www.justgiving.com/fundraising/louise-milliken1 to leave a gift in your will via https://www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.