Ellie Louise – Art Therapy

Ellie Louise Brown lives in Dungannon with mum Fiona, a nurse, dad Rodney and brother Ryan. She was only three when she was diagnosed in 2012 with acute lymphoblastic leukaemia. She enjoyed doing art therapy during her illness with Cancer Focus Northern Ireland. Fiona says:

 

“It all happened frighteningly quickly. Two weeks before she was diagnosed Ellie Louise had what we thought was a dose of chickenpox. She was running a very high temperature that wasn’t responding to paracetamol. I felt that there was something more wrong, so my GP organised blood tests and she started a course of antibiotics. blogs-Ellie-Louise-Brown-Personal-stories-with-Joanne-Boal

 

“One night she was unwell and slept in to 9.30 the next morning, which just wasn’t like her. When she got up she was brighter but by lunchtime she was as white as a sheet. We took her straight to Craigavon Hospital where she was admitted.

 

“At 1.30am on Wednesday 28th March 2012, a doctor and nurse came into the room with us as Ellie Louise was very ill. We were told she had a virus in the throat, an infection in the lungs and one of her lungs was partially collapsed. She also had an E Coli infection in the bladder. Her heart rate was 40 instead of 120 and her haemoglobin count was very low.

 

“She was an extremely sick little girl and we were very frightened as to what was wrong. What they said next turned our lives completely upside down and our life changed for ever. The doctor told us she had abnormal cells in her blood. At this point I remember us both wailing with such pain – it was a surreal moment hearing those words. My heart hit the floor and I remember thinking ‘how long do we have?’

 

“The doctors were pretty sure it was leukaemia but didn’t know what type. Rodney and I clung to each other, not taking in the words we’d just heard. Ellie Louise was transferred straight away to the Royal Belfast Hospital for Sick Children via blue light ambulance. I remember coming up in the ambulance and struggling to comprehend what was happening.

 

Ellie Louise with her mum Fiona

Ellie Louise with her mum Fiona

“By the time we arrived at the haematology ward, her haemoglobin count had dropped dangerously low – it should have been 12 to 14 and it had plummeted to 2.5.

 

“She had to get two units of blood and platelets and get her haemoglobin count up before they could take her into theatre to take a bone marrow sample. Every minute was precious and 24 hours later they took her to theatre. Her life literally hung in the balance.

 

“Ellie Louise was diagnosed with acute lymphoblastic leukaemia and that is when the treatment started. Around the same time we had a health scare with our son Ryan, who was 16 at the time. He had developed lumps in neck and arm. Fortunately all turned out to be all right, but it was another worry for us.

 

“Ellie Louise spent the first month in hospital. Three days after she started treatment, about four in the morning, I heard a noise. Our little girl was lying lifelessly in the bed. The doctors worked on her for two hours as she was having continuous seizures from 4am to 6am. Rodney had gone home that night, reluctantly. Shortly after 4am, I rang him to tell him to come back to the hospital.

 

“That afternoon she went through another battery of tests and had a second series of seizures from 2pm-5pm. It was a frightening time waiting for an MRI scan and test results to determine what was going on in Ellie Louise’s body. Doctors decided to give her anti-seizure medication and restart chemotherapy. Thankfully Ellie Louise has had no seizures since and has been off anti-seizure medication over a year now.

Art therapist Joanne Boal (left), Ellie Louise and mum Fiona

Art therapist Joanne Boal (left), Ellie Louise and mum Fiona

 

“Ellie Louise continues to battle this very challenging, life-threatening illness. As well as being in hospital for a month, she has endured nine months of really high intensity chemotherapy. She currently receives daily chemo at home and hospital chemo as well, and will continue with her treatment until doctors have confirmed that the leukaemia has gone.

 

“She has had many lumbar punctures, many injections, many intravenous treatments, many chemo medicines, many sick tablets and many steroids, all of which is very unpleasant and frightening, especially for a child. After she was discharged, there were times we had to drive up and down to Belfast three or four times a week. It was a very, very tough time and your whole life changes. But every day we got through, we knew we were a day closer to the finish. Despite all, she has remained a very sociable and lively little lady who is fully of energy.

 

“Cancer Focus NI’s art therapy service has played a hugely important role in her journey. One of our concerns is how this experience will affect Ellie Louise emotionally and psychologically in the short and longer term. I wanted to do everything possible to help her cope with what she’s had to go through.

 

Art therapy

“Art therapy helped her deal with whatever emotions she had at the time, feelings that she wasn’t old enough to articulate or express in other ways. She’s so young, she didn’t really understand why this was happening to her.

 

“We met up with Cancer Focus NI’s art therapist Joanne Boal once a fortnight or once a month, depending on when we had to come to Belfast for a hospital appointment.

 

Art as a distraction

“Before having a lumbar puncture, Ellie Louise had to fast after a light breakfast from 8am until around 4.30pm. It’s a very long day without food for a child. We had to spend the whole morning in a waiting room before going into theatre in the afternoon, which can be anytime from 1.30pm onwards.

 

“You can’t go anywhere because of the risk of infection and even the canteen is out of bounds because she is fasting, which is so frustrating for an active little girl. Joanne came along to the hospital and distracted her with art therapy, helping to take her mind off her hunger and what lay ahead – a fantastic help. It’s such a brilliant diversion and is so therapeutic.

 

Relaxing

“It’s hard to measure the benefits, but I feel Ellie Louise had fewer temper tantrums and was more relaxed after a session. She’d also sleep in the car on the way home if she’d had an art session prior to her clinic or treatment.2A5 Ellie Louise Brown Personal stories 2

 

“Joanne has commented that Ellie Louise has a fantastic imagination that hasn’t been dampened by her experience, which is very reassuring for us as parents. For me, personally, the artistic expression through art therapy has had a big part to play in this wonderful outcome.

 

Building trust

“She trusts Joanne, who is so easy going and gentle, and is really comfortable with her. As a parent, I knew my daughter was in safe hands with a very highly skilled professional who goes above and beyond what is expected in her role. I know the time that Ellie Louise had with art therapy was time very well spent for Ellie Louise’s emotional and psychological development.

 

“The Cancer Focus NI service for children in hospitals is relatively new and I only wish it had been available when Ellie Louise was going through the most gruelling part of her treatment. Fortunately, other children can have bedside art therapy now – and I think every child in hospital would benefit from it.

 

“While Ellie Louise was with Joanne, I was also used the charity’s counselling service, which is a brilliant complementary service, especially when one of your children has cancer. I found it inspirational and it has helped me tap into my best coping skills to face the challenges I and my family faced.

 

Nourishing

“As a wife and mother, you want to help your husband and children in the best possible way – when cancer crashes the family you are traumatised. You have to learn how to look after everyone including yourself. Nourishing the mind is as important as nourishing the body so that you are best equipped to face the challenges of dealing with cancer.

 

“Ellie Louise is a lovely bubbly warm personality and a ray of sunshine. She is active and loves being outside. Most people who saw her couldn’t believe she was battling cancer.

 

“As parents, Rodney and I are doing everything to make life as normal under the circumstances for both Ryan and Ellie Louise and try to incorporate as much fun as we can into daily life. I’m so in awe of her zest for life, attitude and determination to battle cancer. She has taught us a lot about life.”