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.
Our first born child, Aidan, was just 16 months old when he first became ill. He was diagnosed with a variety of different infections, but five weeks later we were given the horrific news he had an aggressive medulloblastoma brain tumour which had also spread into his spinal cord. Aidan was given the best treatment options available at the time and fought a brave battle, but despite everything, we still lost him just one month shy of his fifth birthday. Now we want to raise awareness and help prevent other children from having to face a similar fate.
“Research into paediatric brain tumours and how to treat them effectively is the only thing that can save the lives of other children like Aidan. A greater understanding of how the different tumour cells develop, as well as discovering more effective treatments that target those specific cells, will not only reduce mortality, but will also improve the quality of life of children who survive brain tumours.”
Here is Aidan’s story as told by his mother, Natalie…
Aidan was born on 28th May 2008, weighing in at 7lbs 10oz. The first 16 months were a magical time, as I’m sure it is for most new parents; Aidan thrived, had a lovely nature and an amazing appetite.
By the time he was a year old, Aidan was easily meeting all his milestones and was settled at a local nursery. Things were going so well that we planned our first family holiday abroad for the end of September 2009.
Aidan loved digging in the sand, playing in the pool and running round the apartment – it was a fantastic family holiday. Strangely, however, Aidan started vomiting randomly, often in the morning, but would seem fine afterwards. We were a little concerned, but put it down to the holiday sun and different diet.
Back in the UK, a couple of weeks passed and Aidan still wasn’t 100%. The random sickness continued and he started to become less stable on his feet – but overall the signs were subtle. During this time we had seen our GP on two occasions and he was diagnosed with and treated for a post-nasal drip and then an ear infection.
Another week or so passed and we felt that Aidan’s speech was starting to regress. Getting no answers from our GP we decided to take Aidan straight to A&E at Yorkhill Hospital, Glasgow. Again they put his symptoms down to an infection, but this time it was thought that it was in the urinary tract. Aidan was prescribed more antibiotics.
On Sunday 7th November, Aidan awoke with a squint in his left eye which was obviously quite alarming, so we took him immediately back to A&E at Yorkhill. This was the beginning of what would turn out to be the longest and worst day of our lives. Aidan was monitored all day and the on-call consultant was contacted that afternoon. After an assessment, the consultant immediately arranged for a CT scan. Within minutes of the scan we were ushered into a small room and our worst fears were realised. Aidan had a significant tumour at the back of his brain which was restricting the flow of cerebrospinal fluid (CSF) around his brain, causing an increase in pressure. An ambulance was already waiting to take Adrian to the Southern General Hospital, also in Glasgow, for brain surgery. We were told that by this point the pressure in his brain was so high that it was life-threatening.
We now know that the symptoms Aidan had been experiencing were typical symptoms of a brain tumour in children. Over a period of around five weeks, Aidan’s symptoms had progressed fairly quickly. Many children are misdiagnosed for several months before finally being diagnosed with a brain tumour. It is vital that diagnoses are made early in order to reduce the progress of the disease and thereby, hopefully, save lives.
Aidan had surgery that night to relieve the pressure around his brain. He had an external shunt fitted allowing the CSF an alternative route to flow and thus reduce the pressure. We were told that Aidan would face further major surgery the next morning with a view to removing the tumour, but that there was a significant risk of brain damage and that Aidan may be left partially paralysed or unable to speak.
Aidan was in theatre for nine hours while surgeons managed to remove around 90% of the tumour without causing any significant damage. Three days later, Aidan had to go through further brain surgery to put a permanent shunt in place as his body was no longer able to regulate the flow of CSF on its own.
We then were delivered further earth-shattering news when an MRI scan revealed that the disease had spread into his CSF and down Aidan’s spinal cord.
We met with the oncologist who advised us that Aidan’s medulloblastoma (the most common type of brain tumour found in children) appeared to be very aggressive (medulloblastomas are often more aggressive in infants). Because of his age and the stage of the disease at diagnosis, we were advised at that point that Aidan had a less than 20% chance of surviving beyond five years. Obviously this news was absolutely devastating – we cried and cried for days.
We were told that Aidan’s best chance was to follow the gruelling ‘Headstart 3’ protocol. This meant that Aidan would have five cycles of chemotherapy, each 28 days long, followed by a cycle of very high strength chemotherapy and stem cell rescue. In simple terms this was throwing as much at Aidan’s body as it could take.
For much of the time, starting in December 2009, Aidan was neutropenic (had no immunity) and therefore had to remain an in-patient, often confined to one room, in the Schiehallion Ward at Yorkhill.
By the end of the first cycle, Aidan had lost weight, lost his hair and could no longer walk. He was fed through a nasogastric tube and received regular blood and platelet transfusions. He had a central line to administer the chemo and several times he suffered infections of the line, as well as other infections due to his lack of immunity. On three occasions these infections resulted in septic shock. Aidan was given several courses of IV antibiotics, alongside some serious pain control (morphine and ketamine).
Despite this, Aidan remained an absolute joy. He made the journey to the ward’s playroom whenever possible and when he couldn’t we would set up play mats on the floor of his room. On Valentine’s Day that February, he even managed to exchange cards with another wee girl on the ward!
Aidan had bi-monthly MRI scans to monitor the effectiveness of his treatment. It made a big difference but, by the end of the protocol, there was still evidence of the tumour in his brain and spinal cord. The oncologist told us that Adan wouldn’t be able to tolerate further chemo, so instead he would need to undergo radiotherapy at the Beatson cancer centre. This would last six weeks with radiotherapy to his full brain and spine with a boost to the original tumour site every day of the week, Monday to Friday. The upside was that Aidan would remain well enough to stay at home and travel to and from the Beatson each day; the downside, apart from the treatment itself, was the need for him to be put under general anaesthetic each day due to the need for absolute precision of the treatment.
Again it was Aidan who took all of this in his stride and gave the rest of us the strength to see it through. As long as he got to spend some time in the playroom and got his toast and milk when he awoke after the anaesthetic, he was happy. He would run along to the radiotherapy room waving at all the adults waiting for their treatment – it was amazing for everybody.
The end-of-treatment MRI in October 2010, gave us the cruel news that although Aidan’s brain was now clear, a small amount of the disease remained at the bottom of his spinal cord. Complete remission had not been achieved and there were no further intensive treatment options available. The consultant gave us a glimmer of hope by explaining that the remaining disease had no blood supply and there was a possibility that it could be dead tissue that would disperse in time. However, the likelihood was that Aidan’s disease would relapse at some point over the following two years.
We were sent away and Aidan was closely monitored for recurrence via regular MRI scans. It was a routine scan in June 2011 that broke our hearts. It showed that there had been significant tumour growth in another area of the brain. Aidan had not displayed any symptoms, so it was a complete shock. Furthermore, we had been told that if the cancer recurred there would be no cure. Aidan’s body could not handle any further intensive treatment of any kind and so, in August 2011, he entered into a maintenance plan of oral chemotherapy with the purpose of attempting to keep the tumour at bay.
We administered the oral chemo at home and the dosage attempted to balance effectiveness of treatment versus Aidan feeling well enough to enjoy as normal a life as possible for as long as possible. Given the circumstances, we really did have a lovely 14 months. Aidan started nursery, loved it and made many friends. As a family we looked to make the most of opportunities to spend quality time together at home and also took Aidan on several fantastic holidays and days out to Lanzarote, Euro Disney, Lapland, Thomas Land, Peppa Pig World, Center Parcs (twice) and Calum’s Cabin (on several occasions). During this time, Aidan became a big brother when little Luca was born on 16th July 2012.
MRI scans during this period confirmed that the chemo was doing its job, but again there is a BUT…and this time it was the fact that even on this low strength chemotherapy, Aidan’s body could only handle just over a year of treatment.
In October 2012, Aidan had to come off the treatment again. The MRI at that point showed once again that there was no evidence of the cancer in his brain.
Aidan’s next routine MRI scan was in January 2013, at which point we were informed that the tumour had started to grow again – although once again Aidan was showing no symptoms. It was heart-breaking.
One final prospect remained in the form of a drug trial being conducted at several medical institutes world-wide. Fortunately for us, the nearest centre was Newcastle. Aidan was accepted on the trial and we started weekly trips to the Freeman Hospital. Early trial results had been positive with a number of patients with medulloblastoma responding well to treatment. Although still classed as chemotherapy, the trial drug used an alternative method for preventing further tumour growth, targeting a specific type of medulloblastoma cell (which as it turned out was not the type of medulloblastoma that Aidan had) rather than the traditional method of killing off tumour cells whilst also sacrificing healthy cells within the body.
The first MRI scan was scheduled after the second month of the trial, but before Aidan got to that point we were already starting to notice subtle changes in his speech and mobility. We asked for an earlier scan to be conducted and the result confirmed that the trial drug was not working for Aidan.
From that point, things progressed quickly with Aidan becoming more symptomatic. Increased pressure in the brain due to tumour growth and oedema meant that Aidan was increasingly being sick and in pain. His symptoms were controlled as well as possible with steroids, morphine and anti-sickness medication – there being no more active treatment options available.
During the next few weeks, Aidan required more and more medication to control his symptoms and became increasingly sleepy – just wanting to cuddle his Mummy and Daddy most of the time.
For the last week of his life, Aidan was unconscious almost all of the time – a syringe driver with all his medication controlled his symptoms. His nurse and doctor told us that he could still hear us and feel us close, so we stayed with him and cuddled him all the time. We read his favourite stories, talked about all the fun times we had had together and listened to his favourite music and TV programmes.
Aidan died peacefully on Saturday 27th April 2013.
Research into paediatric brain tumours and how to treat them effectively is the only thing that can save the lives of other children like Aidan. A greater understanding of how the different tumour cells develop, as well as discovering more effective treatments that target those specific cells, will not only reduce mortality, but will also improve the quality of life of children who survive brain tumours.
All of the care that Aidan received was fantastic and he was offered the best treatment options available at the time, but current treatments for brain tumours do not save enough children and those who do survive are often left with significant long-term health issues such as mobility and speech problems, growth and hormone problems, learning difficulties, hearing loss and a whole host of other side effects. These health issues are often so significant that these children will never be able to lead independent lives when they grow up.
This is why we have chosen to help fund the fight against brain tumours in children and are supporting Brain Tumour Research in Aidan’s memory. We have set ourselves a target to raise £90,000 to sponsor a PhD student researcher at one of the charity’s research Centres of Excellence with our wish to see mortality rates in children reduced, but also to see the quality of life for the children that survive improve, allowing them to lead as full and normal a life as possible. In the first 18 months since we lost Aidan, thanks to the amazing generosity of family, friends and supporters across the wider community, we raised £83,000 towards that target.
Natalie and Barry Linden
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. At the current rate of spend it could take 100 years to find a cure.
If you have been inspired by Aidan’s story you may like to make a donation to Brain Tumour Research via Natalie’s JustGiving page, via www.braintumourresearch.org/donation/donate-now or 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.