Personal Stories

Izzy Leamy

Age 3 | Dublin

Izzy Leamy, from Dublin 9, was diagnosed with a brain tumour at one and half years old, after concern was raised about her lack of weight gain and developmental delays in movement and strength. Izzy’s mother Cliona Gaughran was concerned about her daughter’s health and with suspicions about marks on Izzy’s body, pushed doctors for a test for NF1, a genetic disease that causes tumours to grow. 

The test indicated that Izzy did have the condition and a subsequent MRI scan revealed a large tumour on Izzy’s brain that is inoperable because of its position. Cliona describes the diagnosis as “the worst news I could ever get.” 

Izzy was put on chemotherapy treatment at Crumlin Children’s Hospital. The chemo is administered weekly and Izzy had a tube fitted to her chest to take bloods and administer chemo, and a feeding tube fitted to her stomach, as the chemo treatment meant that she could not eat naturally.

A year and a half on, Izzy is now three and her health is much better. Doctors have confirmed that the tumour will not shrink but the treatment is keeping it stable. Izzy learned to walk two months before her third birthday and has recently started school, which she loves. Her mother describes her as a “different child” now.

Cliona says that a very difficult outcome, aside from Izzy’s ordeal, is the fact that Izzy’s six-year-old brother Ben does not get the attention that he needs. She explains that it is “incredibly difficult to find a balance.”

NF1 is a condition that Izzy will live with forever and can cause tumours to grow at any time. She goes for an MRI scan every three months and is taken to a McDonald’s as a ‘treat’ after each visit.

Jake

Age 5

At four weeks old, Jake Smith’s mother Andrea went to see a GP as she had noticed a lump on the infant’s head. That day, Jake was referred to Cavan General Hospital. A scan revealed a large mass on Jake’s brain, and he was taken by ambulance to Temple Street Children’s hospital immediately.

A day later, on Christmas Eve, he was sent for an emergency MRI scan and Jake was diagnosed with a Grade 4 brain tumour and was scheduled for surgery early in the New Year.

Jake’s parents Andrea and Padraic took him home to spend the Christmas holidays with his two older siblings and family but unfortunately he got very sick over the holidays and they quickly had him baptised on St. Stephen’s Day and rushed him back to Temple Street.

He was operated on and a large tumour approximately the size of a man’s closed fist was removed on 29th December. Jake and his parents spent a month in a high dependency ward in Temple Street. On one occasion he stopped breathing. CPR was performed on Jake and he was rushed to the ICU.

During that time, Andrea and Padraic missed out on celebrating Jakes’ brother’s 5th birthday as Jake was too sick and his parents could not return home. When Jake was discharged from Temple Street, he got to spend just 10 days at home with his siblings, after which he was transferred to Crumlin Children’s Hospital where he spent nine months almost full time in hospital on intensive chemotherapy treatment.

Jake took an allergic reaction to one of his chemotherapy medications and it damaged the muscles in his throat which required another stay in ICU. Jake was fitted with a feeding tube and was not allowed to take any food or liquids by mouth for more than six months so as to allow the muscles to recover and heal. During Jake’s time in hospital and ICU he forgot how to drink and swallow, and now suffers with severe oral aversion.

Jake’s tumour grew back, and he was operated on again in January 2016 but surgeons were only able to remove a portion of the tumour. He was put on oral chemotherapy but unfortunately this was unsuccessful, and the tumour continued to grow.

In 2017 he was given a new trial medication, the first child in the world to do so. Jake continues to take this medication. Jake’s tumour has now stabilised and has shown little to no growth.

Now five-years-old, through his work with speech and language therapists, Jake is learning to take sips of water. Doctors had told Andrea and Padraic that their son may never be able to walk, but he has learned to do so and loves to play with his siblings in the garden, climbing and playing on his swing set. Andrea says that he is “a joy to have in the house.”

Throughout Jake’s treatment, both Andrea and Padraic have had to give up work to care for their son, who required around the clock supervision while on chemotherapy.

Andrea says that Jake and his siblings, who were six and four years old when Jake was born, do not remember a time when there were not health and safety procedures in place or even a ‘normal life’.

Alannah

Age 3

Alannah, from Kerry, was diagnosed with NF1 at two years of age, and subsequently a brain tumour, after displaying worrying symptoms such as dizzy spells and headaches. An MRI scan was ordered for Alannah and when the results were presented to her parents, they were also informed that an ambulance had been booked to take her to Temple Street Children’s Hospital, Dublin, that night. 

Subsequent tests revealed that the tumour is wrapped around her optic nerve meaning that it is inoperable due to the risk of blindness. Alannah goes for regular eye check-ups and MRI scans every three months to monitor the tumour.

Alannah started pre-school in September 2020. Her tumour caused hydrocephalus, a build-up of fluid in the cavities deep within the brain and so she was fitted with a VP shunt to drain this fluid. The shunt could break if she falls and would require immediate brain surgery to repair, so she requires constant supervision.

Alannah has been provided AIMS funding, which provides for an additional support staff member to be present in her school room. Alannah has a nine-month-old brother, Adam, who Geraldine explains “has had to take a back seat”. She says that it is hard to keep the fun element of life for her children, but she and Alannah and Adam’s father Andrew try.

A huge proportion of Geraldine and Andrew’s lives are taken up by travelling for hospital appointments from Kerry and, as the medical teams are based in Dublin, there is a huge cost incurred through paying for hotels. Geraldine is a pre-school teacher and says that it is difficult not to compare Alannah’s progress to that of other three-year-olds. Emotionally, the experience is highly draining, but she is trying to accept the situation as it is.

Adults reflecting on their paediatric brain tumour experience

Conor Cantwell

My name is Conor Cantwell, I am 21 years old. At 4 months old at my routine vaccinations, a simple query made to my GP about a nystagmus; an uncontrolled shaking of the eye, that my parents had noticed was the catalyst for further tests.

In June 1999, when I was only 6 months old, a CT scan in Crumlin Children’s Hospital revealed a mass on my optic nerve. This led to me having to undergo a biopsy in Beaumont Hospital several weeks later. This biopsy concluded that this mass was in fact a malignant optic glioma brain tumour. 

Then began the process of treatment to tackle the tumour.  The medical team determined that I was too young to receive radiotherapy and the tumour was inoperable due to its location. My only option was regular chemotherapy treatment which I underwent from September 1999 to July 2000. Obviously since I was so young I have no memory of this time but I’m sure it was a period my parents will never forget. Fortunately, the treatment was successful in tackling the tumour.

While I do not have any recollection of the diagnosis or treatment, visits to Crumlin Children’s Hospital were a part of my childhood. They carried on into my teens as I continued to attend check-ups with ophthalmologist Dr Donal Brosnan and oncologist Dr Anne O’Meara who I will be eternally grateful to for their unwavering support and their warm reassurance during my childhood visits. Although the treatment was successful in beating the tumour, I was left with a visual impairment. Considering I was so young when I was diagnosed and treated for the resulting visual impairment, it is all I really know and  I have grown up with this level of vision and learned to deal with it. I have never let it stop me from pursuing my goals.

I attended St Canice’s Primary school from 2003 to 2011. I completed primary mainstream education but I also got educational supports and assistance to ensure my eyesight never held me back. These supports ensured I was never at a disadvantage from my peers. Despite  reluctance from some people I also participated in mainstream sport. Being from Kilkenny and growing up in the naughties watching not only one of the greatest hurling teams of all time but one of Ireland’s greatest ever sports teams , I was always going be drawn towards hurling. I couldn’t have chosen a sport with a smaller ball but I never let that stop me from trying and thankfully my parents weren’t going to let it hold me back either. I wouldn’t say I was much good at hurling but given that it’s the primary sport in Kilkenny having the chance to emulate my heroes alongside every other child of that era provided a sense of normality for me. However, I’m not going to pretend it was all plain sailing, there were definitely frustrations in playing alongside my friends in school who didn’t have the additional challenge of reduced vision. I never really saw myself stopping because of it, I think it just made me more determined to work that bit harder and see where it took me.

I continued to receive supports at second level education and these became more important than they had previously been with the increased demands that secondary education brings with the many subjects and teachers. CBS Kilkenny allowed me to fit in as a “normal” student while also ensuring I got the supports I needed. Teachers were always very supportive and accommodating to help me to achieve my potential. Upon reflection, it was my stubbornness and not wanting to be different or to accept the easy option that led me to become truly determined and not put any limits on what I wanted to achieve because of my visual impairment.

When I went to secondary school I began to move away from hurling and gravitated towards rugby. Rugby has taught me a lot but very early on it led me to explore a curiosity and fascination with training. Given the physical nature of the sport this fascination originated from wanting to get bigger, faster and stronger to improve my own game and become a better player. Similarly to most teenage boys I wanted to be a professional athlete and this dream led me to explore different types of training and I really enjoyed this. I was a relatively unusual secondary school student in the sense that from very early on I knew what I wanted to do after school. That was to study Sport Science. As I continued to play rugby throughout my teenage years, I had seen great improvements in my game from training but I had also discovered the more specific field of strength and conditioning coaching along the way. While I enjoyed playing rugby it was really when I carried out some shadowing experience and a BT Young Scientist project that really affirmed that I wanted to study Sport Science. In 6th year I was extremely determined that this was what I wanted but was also aware of the challenges the leaving cert points posed; challenge accepted. I decided it would be best to step away from playing rugby to transfer my focus to getting the best leaving cert I could. As it transpired in November of my leaving cert year, after some interest in my BT Young Scientist project which had looked at “Functional Movement Training in Young GAA Players”, I was invited into the Kilkenny U21 Hurling team backroom staff to assist with strength and conditioning. Despite stepping away from rugby to focus on study subsequently this opportunity arose and sparked the beginning of my coaching journey.

I completed my leaving certificate in June 2017 and thankfully in August of that year I  accepted my first choice of Sport and Exercise Science in the University of Limerick. This was my aspiration and not only had I been able to survive secondary school without any issues I thrived and was able to achieve my dream course. It didn’t just happen it was the result of loads of  hard work but I reaped the rewards in the end. Sport has been such a big part of my life. I could have easily been deterred from or given up on but it ended up being such a focal point for me. I think my frustrations and desire to achieve really led me into coaching and created an inclination to help people improve and accomplish their goals. In September 2017, I began my third level education and it was everything I hoped for and more. The course allowed me to further explore my curiosity around training, performance and other areas of interest. The sporting city of Limerick allowed me to continue my coaching journey. I was given the insightful opportunity to assist with Munster Rugby underage development squads, this involved shadowing and exposure to coaching and really allowed me to develop my skills. This experience led me to roles with both Garryowen FC and the National Centre Limerick Swimming squad where I further honed these skills. In the spring of 2019, I got the opportunity to study abroad for a semester and complete an internship in East Tennessee State University in the US. I learned from world renowned sport scientists like Dr Mike Stone, Dr Brad DeWesse and Dr Kimitake Sato to name a few. This was an incredible learning experience and accelerated my development as a coach enormously. Upon my return I took up a role as Senior Strength and Conditioning Coach with Garryowen FC and completed my 3rd year work placement with Munster Rugby Senior team.

That brings me up to now as I currently continue my role with Garryowen FC and complete  my final year of my undergraduate degree. While I do not remember the diagnosis of my brain tumour or the treatment  I had to undergo at the time, I am left with a visual impairment. Despite this I don’t think your past defines you as a person but it does shape the way you choose to live your life. I don’t identify as a visually impaired man, I just happen to have a visual impairment, it doesn’t define me it’s just one aspect of who I am. It hasn’t stopped me from achieving anything so far and I am not going to let it start anytime soon.

Julie Power

Julie Power

I was first diagnosed with a brain tumour, called an Astrocytoma, in 1986. I was 12 years of age.

I had a recurrence in 1988. These tumours were removed by operations and I had a shunt inserted, which went from my head to my stomach. The shunt enabled my cerebral fluid to flow from my head. I have had further operations for revision of my shunt in 1991. A bone was taken out of the back of my neck or the base of my head, to help with a cyst in my head. I had an operation in Switzerland while on holiday, as my shunt had blocked and the neurosurgeon over there inserted a second shunt.

In 1998 there was another recurrence of the brain tumour. I have had an abundance of operations and even though a large part of my life has been spent in hospital, the support I received from family and friends kept me in good positive form.

I succeeded in getting my Degree in Philosophy and French in 2010. Today I have my own house and I work in University College Cork (UCC) where I teach French to students with disabilities. I am a Personal and Educational Assistant to a young woman in UCC, I invigilate (supervise) exams and I also volunteer as a peer mentor (helping students) in UCC.

Every illness has side effects. I have poor balance and double vision with a nystagmus. However having a very positive attitude helps to overcome obstacles.

I feel I am very fortunate to have succeeded as well as I have. The Brain Tumour Support Group in Cork has helped me in many ways.