Parents’ heartbreak led them to fund research

Parents’ heartbreak led them to fund research
Lyla Nsouli

Brain cancer is the #1 cause of death of childhood cancers, of which DIPG is the biggest killer, writes Sheila Bailey

March is Brain Tumour Awareness Month. One particular type of brain tumour – a diffuse intrinsic pontine glioma – will take the life of any child who has the terrible misfortune to suffer this incurable, inoperable and terribly debilitating illness.

It is a cancerous tumour in the pons, part of the brain stem that only affects children. In younger children the symptoms may be slow to manifest themselves clearly and can easily be mistaken for other problems. Nervous system function is deeply affected and double vision may occur, drooping of one side of the face and difficulty chewing and swallowing.

There is often a motor problem with children dragging one leg. The symptoms may worsen rapidly because the tumour grows rapidly.

Brain cancer is the leading cause of death from childhood cancers and DIPG is the biggest killer of children with brain cancer. Diffuse Intrinsic Pontine Glioma, or DIPG as it is known, despite its desperate impact, presents an opportunity for all forms of cancer because it has been suggested that a cure for DIPG might result in a cure for almost every other type of cancer.

Chemotherapy

It may be one of the most resistant of all cancers to chemotherapy but because it only affects children whose treatment has historically led to innovations in many other forms of cancer, any step forward in reaching a treatment could revolutionize cancer research The Lyla Nsouli Foundation for Children’s Brain Cancer Research came about when beautiful bubbly Lyla lost her very young life to DIPG.

Lyla was the first girl in a family with two generations of boys. She was a happy, gregarious little girl who developed normally. On 13 August 2011 Lyla’s Mum, Simone, noticed that she was dragging her foot and was a little withdrawn, but otherwise was her normal self. They were due to leave on holiday that morning.

Said Simone: “We decided we would look up a local doctor when we arrived in France later that day, but after a short flight, only hours later, we were alarmed to see it had worsened, and took her straight to the hospital emergency room. An MRI was done within an hour of doctors assessing her and determining that her entire left side was weak. After she returned from her scan, we waited in a room with a sedated Lyla, for more than an hour, after being told that a neurologist was coming to speak to us about “abnormalities” they had discovered. It was an excruciating wait full of panic and overwhelming fear and anxiety.

“However, this was nothing compared to the horror of being taken away from Lyla, down a dark corridor, to a small doctor’s office, and told by two strangers that Lyla had Diffuse Intrinsic Pontine Glioma (DIPG), an untreatable, incurable, inoperable, aggressive brain tumour.

That she was expected to only live months. The words were like painful, physical blows, difficult for the mind to assimilate and causing such extreme anguish that our reactions range from numb disbelief to absolute hysteria. In that moment, our lives changed forever. “As parents, we did everything we could to hide the reality of the situation from Lyla.

However, as her illness rapidly took hold of her, she clearly knew and felt something was very wrong. We brought her back to London within days of her diagnosis and a week later, commenced her six weeks of radiotherapy. In the week before commencing radiotherapy, it was shocking how quickly Lyla was being affected by her illness.

Dread

“Of course, over time, she began to understand, accept and dread her daily routine of the drive to the hospital, the nurses’ checks, the General Anaesthetic room the unpleasant injections and gases and the canula I.V. needle bandaged to her hand each day.

Lyla’s intelligence and perceptiveness of the situation made her very sad, pensive and deeply distressed about the prospect of each day. “When we would try to make her laugh or smile, she would turn her head and say ‘I don’t want to smile, I want to cry’. The six weeks endured for her radiotherapy were absolute, heart-wrenching, agony.

Each day brought fear, pleading, screaming and hysteria and rage from Lyla and total anguish and heartbreak for us.

She gained 20% of her body weight in two weeks, grew excessive amounts of facial and body hair, lost almost half of her beautiful hair in a ring around the back of her head and ears, and the skin on her neck and ears burned, peeled, cracked and bled.

She was bruised from having daily injections and blood taking, and bore scars on her breast and neck from a Hickman Line (a subcuteaneous IV catheter surgically inserted under the skin to direct injections into the vena cava) that had to be prematurely removed after ten days when she suffered a raging infection that forced her to stay in hospital for a week with a blood transfusion and daily antibiotics.

Dimmed

“Lyla’s eyes became dull, heavy and sad. It was as if their lights of joyful exuberance and childish innocence, were completely dimmed and darkened. Despite the suffering she endured during radiotherapy, Lyla’s tumor remained stable for only two months during which time we traveled with Lyla to her favourite beach holiday, swam with dolphins on her birthday and went to Disneyland Paris.

“Shortly after her third birthday, we were informed that her tumor started growing aggressively again. Lyla’s condition deteriorated very quickly and she experienced the awful symptoms experienced by DIPG children (loss of ability to stand, sit up, speak, etc). Lyla passed away in the early hours of 24 January 2012 in the arms of her parents. We miss her terribly. She was truly our pride and joy.”

From Lyla’s parents’ utter devastation hope is now being given to other children. Shortly after Lyla’s diagnosis her family set up the Foundation. This year will be the fifth anniversary and in that time major grants have been made to research scientists who are dedicated to finding a cure for DIPG.

One of the great strengths of the Foundation is that it focuses purely on research – indeed it is the only major grant making trust that does so in the UK and Ireland.

All of our funding has been raised from private individuals and the Nsouli Family themselves. We have just signed off our first major grant of the year for research, $163,000 for a phase 1 clinical trial into a drug that shows promise as a treatment. No matter how successful the trial is, it will still be too late for little Oisín Boland.

Like Lyla, Oisín was a much loved happy little boy living in Ballymore Eustace. His Mum, Sheila, is a clinical psychologist with the Rehab organisation in Dublin.

His brother Cillian adored him. I cannot do justice to his life and death but his Mum has written a most moving blog detailing his life and times. It’s called Our Butterfly Boy and can be read at www.butterflyboyoisin.wordpress.com.

It is tragic and moving.

It details in stark prose the grief of losing a child in this way. I doubt anyone will read it without shedding many a tear.A family friend, Jenna Hall, ran a series of challenges to raise funds for the Lyla Nsouli Foundation. Jenna knew Oisín’s parents when they were neighbours and she wanted to do something to help.

We have used her funds wisely to invest in research into DIPG. Right now it is all we can do; we have to push ahead with research until the day – and it will come – that a major breakthrough is found. So during the mad month of March please take some time to learn about brain tumours and DIPG in particular.

www.lylansoulifoundation.org

@LylaNFoundation

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