In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
“I am ashamed to admit that there came a stage when I wished Fin had leukaemia. Surely that would be better, there were treatments and things would be OK wouldn’t they? Investment in research and increased public awareness meant leukaemia was no longer a death sentence. But where is the investment and subsequent improvement in outcomes for patients with brain tumours? As we fought as hard as we could for Fin, we were sickened to learn that the treatment for brain cancer is antiquated and barbaric, as cruel as the disease itself.”
Fin’s mum Penny tells his story:
Wayne and I were delighted to welcome Fin into the world although it was a bit of a shock to find ourselves in the sole care of something so small and precious.
Fin was born by caesarian section on 20 May 2004. He was a breech baby and arrived in the world with his head squashed like an alien and his knees folded up by his ears like a frog. Despite this, he was our “angel baby” and he slept and fed well. Seventeen months later, Fin became a big brother when Kenzie was born. Fin had always been quite small and, as the boys grew up, they were often mistaken for twins. I had always wanted three children but it was another five years before our little girl Tegan arrived.
We felt so blessed to have such a lovely family, a nice house and good jobs that we enjoyed. I feared that one day the bubble might burst although never in a million years did I think something so awful would happen to one of the children.
The boys were six and four when Tegan was born. At first, it was a bit of a novelty for them to have a baby sister but they loved her and were never jealous. Fin liked the fact that he was the oldest. A considered child who was happy with his own company, he was confident and would try anything. There was always something special about him, he knew right from wrong and he had immense inner strength and calmness. I have no doubt that, had he lived, Fin would have achieved his dream of becoming an armed policeman.
Fin grew from a chubby baby into a lean and active boy. He played football, cricket and rugby and was completely focused on karate, about to start training for his black belt. Fin was Kenzie’s anchorman giving his younger brother confidence and direction.
Everyone was happy and healthy when we went to Dorset on a camping holiday with friends in May 2014. While we were away, Fin said he felt really sick and he spent a whole day in his bed in the tent. When we came home he started being sick in the mornings and complaining of headaches. It was so out of character and we wondered if he was having trouble with the move to middle school. I spoke to his teacher and then took him to the doctor as the vomiting continued. At first, his symptoms were passed off as a virus but that just didn’t make sense to me.
I was horrified to discover from Google that Fin’s symptoms could be those of a brain tumour and even mentioned it to a friend on the school run. On our next visit to the GP we were given a prescription for antibiotics to clear up a suspected postnasal drip which they believed was causing mucus to build up in Fin’s stomach overnight, leading to the morning vomiting. This time, the diagnosis sounded plausible. The alternative was too awful to contemplate and I felt as if I had been totally paranoid in thinking, even for a moment, that Fin had a brain tumour. When I was at the pharmacy collecting the prescription I bumped into a friend who is a nurse and told her about Fin, saying that something just didn’t feel right. She urged me to trust my intuition as a mother and to keep going back until I felt we had the answers we needed. In the meantime, Fin started on the antibiotics. He was becoming very lethargic and would laze around on the sofa, not even wanting to play on his Xbox or watch TV.
Fin seemed a bit better at the weekend and went out to play cricket on the field at the back of our house. He came in after a couple of hours complaining he felt terrible. He lay down on the sofa and was sick a number of times during the day. We were at the doctors once more on the Monday and the best way Fin could describe how he felt was “delicate.” We were referred to the Alexandra Hospital in Redditch where he had blood tests and neuro tests, none of which indicated there was anything wrong.
The following day Fin had a CT scan as a “precaution” after which the doctor, accompanied by the nurse who is my friend, asked to speak to me. Wayne and I sat with Fin as we were told they had found a lesion on his brain. Arrangements were made to transfer us to Birmingham Children’s Hospital where there would be more tests. I went home to pack a bag and when I returned to the hospital Wayne was in bits with Fin trying to comfort him.
There was to be another CT scan followed by an MRI and then a biopsy. The aim was to determine if the lesion was an abscess or a tumour and, if it was the latter, what type. At first, the neurosurgeon seemed almost certain that Fin had an abscess but as the tests progressed he became less sure. There was a biopsy to gather some cells for testing. Fin was put on steroids and anti-seizure medication.
The decision was made to operate in order to remove as much of the tumour as possible and, over the next two weeks, it felt as though we were being drip-fed information. The more we were told the worse it seemed. It was hard to reconcile our circumstances on the high dependency ward while Fin, whose symptoms were controlled by the steroids, seemed so fit. Although he was bored he was eating well, smiling, sitting up and playing cards at any opportunity.
As horrendous as it was to think of our child having brain surgery that is exactly what I hoped would happen. In that way, the tumour could be removed and we would be able to get back to our normal family life. No-one could tell us if the tumour was low-grade or whether it was cancer and, as painful and shocking as it was, it also felt unreal.
Desperate for information, we did more research on Google where we learned that there were dozens of different types of brain tumours with varying prognoses. The not knowing and waiting was horrendous and signing consent forms for the surgery brought home the reality of our situation. We were agreeing to a procedure which could cause stroke, internal bleeding or leave Fin with limited mobility, even permanent brain damage. We tried to explain things to him as best we could.
Six hours into surgery we were getting desperate for news and, at last, it was positive. Fin was in recovery. Although upset and distressed as he came round, he was speaking and could squeeze my hand. Despite the ordeal he had just been through, Fin didn’t want to rest and insisted on us all playing round after round of the card game Uno.
It was looking increasingly likely that Fin had a grade 4 glioblastoma multiforme, a very aggressive form of malignant brain tumour. This was as bad as it could get. Less than 20% of those children diagnosed with GBM survive beyond five years. There were conversations about follow-up treatment options which included chemotherapy and radiotherapy and we inquired if there were any trials we could take part in. We were desperate to try anything and everything to ensure that Fin was going to beat the odds and that he would be a long-term survivor.
I am ashamed to admit that there came a stage when I wished Fin had leukaemia. Surely that would be better, there were treatments and things would be OK wouldn’t they? Investment and increased public awareness meant there were now effective treatments and a leukaemia diagnosis was no longer the death sentence it once was. But where were the investment and subsequent improvement in outcomes for patients with brain tumours?
As we fought as hard as we could for Fin, we were sickened to learn that the treatment for brain cancer is antiquated and barbaric, as cruel as the disease itself. We also learned 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 is allocated to this devastating disease. There are no words to describe the anger and frustration I feel at this dreadful injustice.
Fin was eligible for a trial of the chemotherapy drug Avastin but this meant he had to have a central line fitted. Although this affected his quality of life – no more swimming for example – and would make him prone to infection, we agreed we had to do it. It was eventually removed as the routine of flushing it out caused his temperature to soar and would be followed by a hospital admission every week.
Then there was the radiotherapy mask made to fit across his face so that during treatment sessions his head could be bolted to the table. His drugs, sometimes five pills a day which we had to crush and mix with juice as he became frightened of swallowing, were so toxic we were not allowed to handle them without an apron, mask, gloves and a special container for the waste. We had allowed the surgeons to cut into his brain and now we were feeding him poison and giving consent for him to be pinned down and exposed to radiation. The treatment was likely to increase his risk of getting cancer in the future, leave him infertile and would diminish his IQ and ability to concentrate.
Throughout all this, Fin continued to attend Alvechurch Middle School whenever he could. We also had a home tutor to help him to keep up with his school work and his teachers and classmates were very supportive.
There was more surgery, this time in Liverpool, and it was touch and go if we would be able to make it back to Birmingham for Fin’s attempt to break the Guinness world record for the number of teddy bears in a line. Remarkably, he was discharged that day and we arrived just in time to take part and lay down bear number 15,534 to claim the record. The event was an overwhelming demonstration of how much love and support there was for us all. If love, good wishes and generosity of spirit could make people better, Fin would be here with us today. Despite his own troubles, Fin was determined to do what he could for others and during his illness he helped to raise more than £100,000 for the charity Brain Tumour Research and Birmingham Children’s Hospital.
Fin took the mickey out of us as we tried anything and everything to make him better. He wasn’t keen on the ketogenic diet as it restricted his visits to the Dilshad in Alvechurch for his favourite chicken tikka masala. He agreed to the heavy breathing spiritual surgery in Derbyshire although he wasn’t a fan. We tried homeopathy, healing sessions and trials of re-purposed drugs including treatments which had been developed for diabetes and intestinal worms. He went along with it all, bless him, trusting that we were fighting his corner, pushing the boundaries and would do anything in the fight to stop the tumour growing. We were doing so much that at times we encountered disapproval from the doctors because how would we know what, if anything, was making any difference? We didn’t care. We had to try everything and if any one of those things made a difference to the outcome then it had to be worth a try.
Tragically it got to the stage where there was nothing more we could do. We could only watch as the high doses of steroids caused our formerly lean, active and sports-mad boy, to balloon in weight from 30kg to 50kg. Fin’s mobility was affected and he needed the wheelchair more yet still walked into school on the first day of term in September 2015, looking like a different child, but with his head held high.
We had a hospital bed at home so we could care for him and make him as comfortable as possible. A month before he died, we organised a party and invited 300 friends and family. It felt important to have a celebration of Fin’s life while he was still here with us.
As Fin took the final steps of this terrible journey there was much that remained unsaid. He couldn’t talk about dying but did find his voice by dictating a letter to his Auntie Claire who listened and wrote down his words. In this way, Fin told us how much he loved us. He was able to say that he was scared of the cancer and spoke about how it had changed his life in good ways as well as bad.
People did the most amazing things for him during his fight. Thomson ensured we got the VIP treatment on our last family holiday in Tenerife; Fin had two dream come true experiences with West Midlands police; he was awarded his first and second honorary black belts from his hero Mr Sakagami; we accompanied him as he was named “Child of Courage” at the Pride of Birmingham Awards and then “Young Fundraiser of the Year” at the Midlands Child of Courage Awards. Just a few days before the end, Lionsgate organised an exclusive home screening of the new Hunger Games movie, for Fin and his friends, just a day after its release in the cinema.
It had got to the stage where Fin’s condition was deteriorating so quickly we were afraid of what might come next. How could we bear to watch as our son became unable to eat or swallow, was robbed of his senses and lost his dignity as he was taken from us bit by bit as the hours and days passed? We feared being unable to keep him comfortable and having to move him into a hospice. Mercifully, that was not the case. Fin passed away peacefully at home on 25th November as we sat with him, held his hand and told him we loved him. It was the best end to a terrible, terrible journey.
We can never make sense of what has happened to us but we can try to make a difference for somebody else. We had spent 17 months trying to get the cancer out of Fin and we couldn’t bear the thought of it being buried with him. We donated his brain to medical research so that he could finally rest in peace and in the hope that it would be of some help to the scientists who are working so hard to understand more about brain tumours.
We are trying to come to terms with our grief while helping Kenzie and Tegan cope with theirs. Tegan tells people that she has two brothers and that one is in heaven. Our hearts have been broken piece by piece and we are drained and exhausted.
Kenzie is lost without his big brother. He is only ten years old but he is very deep. He started a diary to help him process all the emotions he was feeling. At the beginning of his diary, he quoted Martin Luther King to us and these are the words which we are living by for now:
“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.”
For now, we are crawling from day to day and I am not sure if we will ever fly again.