Dr Karen O’Neill, Specialist Registrar in Paediatrics

From teenage cancer patient to paediatrician, it’s a journey that has brought Karen O’Neill full circle – right back to working with the doctors and nurses who originally treated her.  Diagnosed with Acute Myeloid Leukaemia at 16, Karen describes herself as lucky to have been treated in Crumlin Children’s Hospital.  As a 29-year-old Specialist Registrar in Paediatrics now looking back, Karen notes that “it came at the end of the summer after my third year in secondary school.  I had completed my Junior Cert – I had a couple of weeks where I was increasingly tired and dizzy walking around.  People were commenting that I had lost a lot of weight but I hadn’t really noticed that myself.  Then I went to a hockey camp and when I came home I was covered in bruises.”  Prompted by the bruises and the tiredness blood tests were arranged by her uncle who was her GP.    “And that was how I got diagnosed. It was really unexpected as I hadn’t been very unwell.”

 Crumlin

Her luck as she describes it was being treated in Crumlin: “I was transferred there following a discussion between the Connolly Hospital Adult Consultant Haematologist and the Prof. Owen Smith a Consultant Paediatric Haematologist at Crumlin. At sixteen, I fell into the very unlucky cohort of patients, diagnosed as an adolescent, who fall in between the cracks of paediatric and adult services. Nowadays if I was diagnosed like that I would have to remain in an adult unit but they were a little more lenient back then.”

“I pretty much lived there on their wards for about five months while I underwent chemotherapy. The facilities in Crumlin were very different to what they are now.  I was sharing a room with one other person which invariably was a small infant or toddler.  The age difference was often so vast because I was at the very eldest end of the spectrum.  But I always look back and say that I am very lucky to have been able to access paediatric services.  They look after the family unit, not just the adults on their own.  My parents and brother were able to be involved and was able to keep up with school in the hospital.

 Chemotherapy

“I had four rounds of intense chemotherapy in total.  I might get home for a night or two after that finished but after each course but was readmitted with infections pretty quickly. I spent less than two weeks out of the five months at home during that time.  I was a fixture on their ward.  In fairness they said if I had gone to an adult unit, they probably wouldn’t have let me go home at all.  The treatment is very intense and involves a very high risk of sepsis.”

Karen says she inevitably bonded with some fellow teenagers who were also undergoing treatment at the time, adding that she is still in contact with some of them today.  “At the end of the five months I was very lucky as I was declared in remission.  It was then a case of building your life back up again.  I didn’t have to have any further treatment.  I had lost maybe 25 kgs in weight and muscle mass, and I was very weak, so it was about building strength back.” 

Although home, Karen recounts how she was still not free to live a normal teenage life:

“My friends in Transition Year were experiencing that first sense of independence.  But I had regressed – being helped to the toilet and being showered by my parents. From a psychological perspective its very tough because in your mind you are able to do it but then reality sets in and you realise the toll this has taken on your body is enormous.

School

“When I returned to school to go into fifth year, I had a weakened immune system and so I lost a lot of days because of infections.  And then there was the Swine Flu – I ended up missing over a month of school as I wasn’t allowed to go in because of my weakened immune system.  It was prior to the days of virtual learning so I was at home trying to learn as much as I could. As a result, I missed a fair bit of the school year.”

Decision to become a doctor

Reflecting on her subsequent decision to become a doctor, Karen says “when I arrived on the ward in Crumlin in August 2008, I never thought I’d become a doctor.  I got my Junior Cert results when I was there and Prof Smith (who is now the National Clinical Lead for Children, Adolescent/Young Adult Cancers at the National Cancer Control Programme) got very excited and told me he knew I was going to be a doctor. By the time I had finished my treatment, I turned around to him and said I was looking forward to taking over his job some day!” Remarkably, Karen and Prof Smith today count one another as both colleagues and friends.

“What I loved then and still love about hospitals is that community atmosphere, that camaraderie. And having lived in the hospital for five months, I became part of that community. I knew everyone and they all knew me.  That was something then that really inspired me to work in the hospital.  I’ve always been interested in science and so the more I learned about my illness, the more I wanted to learn about the treatment and everything else involved.

Working with children

“Prior to ever being sick, I always thought I would love to work with children.  Then in Crumlin I was so inspired by the children around me, the little ones, they are just so resilient.  They could be lying flat for days and then the next minute they are up and bouncing around.  They just don’t want to feel sick so the minute they feel somewhat better they are up and about again.  I have also volunteered and worked with the team in Barretstown over the years. So all that inspired me to go into paediatrics.  And I’ve always stayed interested in haematology/oncology and in the area of adolescent and young adult (AYA) care.”

Survivorship is a particular area that Karen wants to focus on longer term:

“Children who finish treatment for their cancer hopefully have decades of their lives ahead of them. I am in a privileged position to have not only been cured but to be left with very few long-term side effects of my treatment. But not all children are so lucky. Those who survive, after often left with life changing disabilities, long term impact on organ systems and psychological trauma. That’s a huge area of interest for me within oncology – the late effects and the survivorship.  The treatment may be over but how does it affect your life.  Everybody has to build up back to a “new normal” life. It is important to support children, adolescents and young adults (CAYAs) to achieve their full potential after their treatment. Cure is no longer enough, we need to support these children and adolescents throughout their life after receiving treatment for cancer. The number of survivors of CAYA cancer continues multiply each year. Following treatment these patients have unique clinical and psychological needs.”

Needs

“These unique set of needs are beginning to be addressed now following the publication of the current Cancer Strategy {2017-2026].  Thirty years ago we wouldn’t have been having this conversation because if I had been diagnosed in the 1980s there’s every possibility I wouldn’t be alive now. The same need wasn’t there because we had much fewer survivors. So, it is so wonderful to be able to have this conversation and look at the huge numbers of children and AYAs who survive their cancer.  However, late effects can become apparent years after treatment and we need to be cognisant of minding these needs.

“I am still being followed up myself from a cardiac perspective.  Its only in the last year or two through MRI that they are able to see the damage on my cardiac muscle.   And for those, diagnosed at a young age, you need to think about the impact of treatment over many decades.”

Reverting back to her stay in Crumlin, Karen says even then she was having conversations with Prof Smith about the specific unmet needs of AYAs and how age-appropriate care was so important and the difference it can make: “He was telling me all about the services in the UK where they had Teenage Cancer Trusts funded units within paediatric and adult hospitals where AYA cancer patients were treated in an age appropriate environment which not just for medical needs but also the psychosocial requirements of an adolescent and young adult.  

“In the last three years however, what’s really exciting is that there is now a dedicated focus from the National Cancer Control Programme on adolescents and young adults as a distinct cancer community.  For me, Crumlin was the best place as my needs were very different to an adult in an adult unit but they were still different from the eighteen month old beside me as well.  From treatment, to environment, to education and social needs, they were so different and so distinct.

“The purpose of AYA care is to provide care in an age appropriate manner – this includes choosing the most appropriate treatment protocols for age and type of cancer and an adolescent specialised multidisciplinary team to provide appropriate support. It’s really important we don’t neglect the psychosocial needs of that age group.  We know mental health difficulties are so prominent during and post treatment.  We know going back to work, going back to college, financial loss are all very difficult. If you are missing out on formative years development and experiences that will impact on the rest of your life. 

“Cure is not enough, we need to treat it to maximise survival and minimise late effects but we also need allow these adolescents and young adults to then go on and return to the workforce and live their lives and one of the biggest starts we can give them is treating them in an age appropriate fashion.”

Currently working in Portiuncula Hospital, Co Galway, as a Specialist Registrar in Paediatrics, Karen says her long term ambition is to “be that person driving the survivorship service late effects and looking after all those children who have been left with life changing impact from their treatment and supporting them to be their best person and fulfil their maximum potential throughout their lives.”