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.
“Aaron saved my life before he was even born. I had a car accident when I was four months pregnant and it was a wake-up call, the moment I realised I had to start taking care of myself for the sake of my unborn child. A brain tumour robbed Aaron of the prime of his life and robbed me of my sunshine. It is so painful to think he saved me by giving me something to live for and yet, 24 years later, I was unable to save him.”
Aaron’s mum Crystal, tells his story…
My son Aaron saved my life before he was even born. I was back home in America and at a crossroads, not sure what I wanted to do with my life. I didn’t do drugs or anything like but I wasn’t taking care of myself and wasn’t hanging around with people that really wanted to do something with their lives.
I’d been told it was extremely unlikely I would be able to have children as I suffered from the condition endometriosis. I was just 19 when I found out I was pregnant and, at four months, I had a car accident which changed everything. It was a wake-up call I suppose, the moment I realised I had to start taking care of myself for the sake of my unborn child.
If ever there was a perfect baby, Aaron was it. He walked and talked early and once in school, was put in gifted and talented programmes. He had a profound effect on many people but none more so than his little sister Emily. As a friend of Aaron’s had told me, Aaron always had a pretty girl on his arm but Emily was the most important girl in his life, they adored each other.
A brain tumour robbed Aaron of the prime of his life and robbed me of my sunshine. It is so painful to think he saved me by giving me something to live for and yet, 24 years later, I was unable to save him.
It is ironic that the first sign Aaron was ill came when we were holding a celebration to mark the fact that Emily had completed treatment to correct a twisted femur and to lengthen her right leg which was 2cm shorter than the left. It had been a difficult time up to the point the metal frame and a full-length cast were finally removed in December 2012. We had a few of Emily’s friends round for pizza and Aaron, who was home from uni for the holidays, joined us.
Within a few minutes of coming downstairs to sit with us, Aaron had a seizure. I had never seen anything like it before and panicked. At first, I thought he was choking. One of Emily’s friends, who was first aid trained, took over as we dialled 999.
Aaron was taken to Rotherham Hospital and the first thing he remembered was waking up with paramedics working on him. He was admitted to a ward and asked lots of questions about his lifestyle, he was a social drinker, didn’t smoke, and was otherwise fit, healthy and active.
At the time the doctors said that anyone could have a seizure out of the blue and then never have another but they agreed to do a scan to reassure us more than anything else. I didn’t even give a second thought to the possibility it might be a brain tumour. We’re big fans of Huddersfield Town AFC and Aaron was going for his scan on match day so we agreed there was no need for his dad to cancel his plans to go to the game. We all presumed Aaron would be straight home.
But we were wrong. The scan showed up an abnormality and Aaron was transferred to the Royal Hallamshire Hospital in Sheffield. I was in shock. Aaron, who was 20, looked at me and said: “I need a few minutes’ mum” so I left the room as he called his friends.
I couldn’t reach my husband on the phone so called his mum and sister. I was on the verge of screaming – how could this be happening? Aaron had always been active, he was healthy, and doing really well in his final year at uni. He was tall, just over 6ft, always slim, he went to the gym every day and was president of the university squash club.
It was the first week of 2013 when we were told Aaron had an oligodendroglioma brain tumour. It was a slow grower and had quite probably been there from around the time he was 15. It was agreed surgery would be delayed so Aaron could resume his final year in Colchester but his discharge was on the condition he would be monitored. A scan at Easter 2013 revealed the tumour had grown. Despite this, Aaron felt and looked well. He had one or two small seizures during the night but this was put down to the anti-epileptic drug Keppra. The Keppra made Aaron very low, he wouldn’t want to get out of bed and at one point he felt so down he didn’t think he could go on. Even six months post-diagnosis, I was extremely anxious and there were many nights when I couldn’t sleep especially when he was back at uni, 200 miles away.
With a change in medication, it was once again agreed Aaron could go ahead and take his exams at the end of May and then have surgery with the expectation of being well enough to graduate in July. But, just a week later, Aaron had another seizure. He knew something wasn’t right and phoned me at work to say he needed to come home.
The surgery took place on 21 May, the day after his sister Emily’s 16th birthday. All we could do was put our faith in the neurosurgeon and his team. The operation lasted four-and-a-half hours and 90% of the tumour, which I think was around the size of a 50p piece, was successfully removed. Disturbingly, the tumour had grown significantly since the last scan. Histology showed there were small pockets of activity which led to its reclassification as a very rare grade 3 anaplastic astrocytoma. The word cancer was never used.
Aaron was out of hospital in four or five days bearing a scar which ran right around the top of his head from his left temple to the right. It was kept together with 30 severe-looking staples and the day he had them removed, he said he felt better than he had for a long, long time; he dug his old bike out of the shed and went for a ride. Off he went without a helmet – I could have killed him! I was so angry and told him so, shouting how stupid he was to do something like that with all he was going through.
Despite our initial hopes, Aaron wasn’t able to graduate that year. After all the work he had done he had to forego his finals and, with that, the much-anticipated graduation alongside the friends he had spent the last three years with. Instead, he would be going through radiotherapy and ironically the first session was on 18 July 2013, the day we should have been watching him graduate.
As we drove to the hospital, he looked at me and said: “It’s OK, I’ll graduate next year.” He was a fighter. Uni had offered him an honorary third but he turned it down as he knew he could do better.
For the first few weeks, after his radiotherapy sessions, Aaron would go straight from the hospital to knock a ball around on a squash court, leaving everyone who was looking after him at the hospital dumbfounded. “Are you serious?” they asked. “I’ve got to keep my fitness up, I’m going back to uni,” he replied.
And within a month of the radiotherapy finishing, back he went. It was October 2013. Neuropsychoanalytic tests showed Aaron was as sharp as ever although without doubt it was hard for him to go back to uni but he remained fiercely determined and managed to do so.
Aaron was monitored with three-monthly scans. His first, at Christmas 2013, was clear. It was amazing – we took him back to uni and celebrated with a nice meal. Although the oncologist acknowledged it was good news, she warned us the tumour would come back but we felt we had every reason to celebrate. The tumour type indicated it could be five or ten years before recurrence but, sadly, it was just two-and-a-half.
Aaron was an intelligent young man. Ultimately, he had set his sights on becoming a professional squash coach but his diagnosis meant he was also interested in helping others and he had looked into the idea of going on for his masters and studying medical ethics. It was so hard to see my son, such an intelligent young man who had so much potential, struggling with the side effects of his treatment to the extent that he found it difficult to get work.
Once again, it was Christmas when we got the worst possible news. It was December 2015 and Aaron’s scan showed the tumour had returned and was growing. We were all shocked but Aaron coped OK. We were determined to make it the best Christmas possible but once we got to the New Year, I lost it. I could no longer think that the treatment was “next year”, it was starting in four days. At the time, it all seemed very surreal, I remember feeling that we were running out of luck.
It was Aaron’s choice that his dad accompanied him to the chemo sessions while I attended the appointments with his consultant. He thought I would be too emotional, that I would nag him and fuss around him too much. He was probably right. I was an emotional wreck and completely exhausted. We had been through a very difficult time with Emily’s surgery, recuperation and physio, then Aaron’s diagnosis. It got to the stage where I felt as I was living in hell, running on adrenaline.
After the third, six-week chemo cycle, a scan showed the tumour continued to grow. Aaron was on the drug PCV which made him violently sick. By June 2016 it was decided the treatment wasn’t working and Aaron’s meds were changed to Temozolomide which seemed to suit him better. Aaron had two cycles of the second chemo when we noticed things weren’t right.
Aaron was deteriorating, he was unsteady on his feet and having problems with incontinence. We went back to the consultant and, on 5 September were dealt another dreadful blow – Aaron’s tumour was now in several places and there was no more treatment. Three months to the day, he passed away.
We had moved Emily back to uni to start her second year on the day we got the terminal diagnosis. I remember how Aaron nonchalantly put his hand on my shoulder and said: “You know mum, for the first time in a long time I am at peace. I have an answer, it isn’t the one I wanted but at least I have an answer. I don’t have to go through the chemo any more.”
We sat and talked and I asked him if there was anything he wanted to do, anywhere he wanted to go. My parents are both disabled and Aaron hadn’t seen them for ten years. He wanted to visit them in the States but we couldn’t make the trip as the steroids meant he was at too high a risk of developing DVT on a long-haul flight.
Instead, we travelled to Fort William; he had always want to go to Scotland. Aaron had been struggling with lymphoedema, his legs and feet were badly swollen to the point he could only wear track pants and sandals with Velcro fastenings. Miraculously, it went away for the duration of our time in Scotland and we had a wonderful week. The sun shone and we wandered around in t-shirts as we enjoyed the beautiful scenery and the calm waters. We had a great trip out to the Isle of Skye, the sea was like glass, and had our first taste of haggis with neeps and tatties.
It was also Aaron’s wish to visit a good friend in Exeter and although he managed to do this the lymphoedema came back with a vengeance and we had to collect him early. Two days after returning from Exeter, Aaron was struggling to breathe and was admitted to Weston Park Hospital in Sheffield. By this stage his face was swollen along with his feet and legs. It was scary to see. He was given a “hall pass” to leave hospital briefly to attend a fundraiser organised by a friend and said how awesome it was that so many people had turned out for him.
I feel as if I have the burdens of the world on my shoulders. Even after six weeks I was still expecting text messages from him or for him to walk through the door. I take great comfort from the fact the last time I heard Aaron’s voice he was telling me he loved me and that we were able to help him achieve his final wish.
From the moment, he knew he was going to die, Aaron wanted to donate his brain to medical science. At one point his wish was to leave his whole body but because he had got so large from the steroids, this wasn’t possible. He was devastated by that but it only served to make him more determined to donate his brain.
Less than twelve hours after he passed away, Aaron’s brain was taken in the hope it would help others. It was to remain in Sheffield and be listed on Brain UK, a national resource supported by the charity Brain Tumour Research which means scientists across the UK will be able to access tissue samples for their research. I had never realised how many different types of brain tumour there were or that they are the biggest cancer killer of children and adults under the age of 40. Nor that just 1% of the national spend on cancer research has been allocated to this devastating disease. I remember when Aaron was first diagnosed with a brain tumour, I read somewhere that around 6,500 people a year were diagnosed with a brain tumour in the UK. I’m horrified now to read that 16,000 people a year are diagnosed with this dreaded disease, more has to be done.
I don’t want to see Aaron’s legacy die and I don’t want his name to be forgotten. Somebody had to really push to ensure Aaron’s wish to donate his brain came true and I hope that in reading his story people will be encouraged to never give up.
It is hard enough to lose a loved one, it is never right to lose a child, albeit Aaron was 24 but he was still my baby.