Irish parents whose son (3) passed away because of an untreatable brain tumour vow to help others parents in the same position
Sheila and Barry Boland were devastated when their three-year-old son died from an untreatable brain tumour. Now they are trying to set up a charity to support other families.
Sheila and Barry Boland always liked September - it was the month in which they got married in 2008. That was until September 30 last year, which was the day they were told that their three-year-old son, Oisin, had an untreatable brain tumour.
The couple were then told Oisin had six to eight weeks left. The tumor that he had only occurs in children and is called Diffuse Intrinsic Pontine Glioma (DIPG).
When she looks back to last August, Sheila, a doctor of clinical psychology, belives there were some indications that her elder son was very ill.
"There were some signs that Oisin seemed to have lost a bit of his usual spark," she says. "Little things like having his photo taken. He just didn't seem to want to smile as much. He was starting to have tantrums, something we had got away with very lightly during the 'terrible twos'.
"He started to walk around as if he was drunk. He constantly seemed to look spaced out. Next to the other kids around where we live, he just didn't seem to be walking right. I remember feeling sad when I watched him trying to keep up with a school friend. I recall seeing him drooling occasionally. I thought, 'That's strange. He can't be teething any more can he?'"
When Barry Boland's parents, Danny and Joan, returned home from a trip to the US that month, they were concerned after seeing Oisin. Sheila says: "Not long after arriving, Granny came to me with tears in her eyes, 'Is he okay, Sheila? He just doesn't seem the same boy.' Grandad thought his spark had gone."
Startled by their comments, Barry (36) and Sheila (37) decided to take Oisin to a paediatric consultant. They thought it could be an ear infection causing the imbalance. He had an MRI and blood tests done at Our Lady's Children's Hospital in Crumlin.
"On the way home, Oisin suddenly went silent," says Sheila. He curled up in his car seat and stared blankly. We called his name and he didn't respond. It only lasted a few seconds but it was enough for us to phone Barry's brother, Brendan, who is a GP."
On Brendan's advice they returned to Crumlin and Oisin was kept in overnight. He was booked in for a CT scan the next morning.
The next day, the consultant took them into a room. "The whole team was with her," says Sheila. "She told us that Oisin had a brain tumour. It was at that moment that everything in our lives shattered, my heart started breaking piece-by-piece, and things started to move at an overwhelmingly fast pace."
After Oisin had another scan the next day, they were told there was no cure.
"That evening a different consultant, a very kind and warm man, took us into a room again. He told me that Oisin would not survive this type of tumour. It is one of the very few tumours that has up to now, not responded to any treatment with a cure. Radiotherapy can buy a few more months, if a parent wishes to take that option."
Sheila and Barry decided against radiotherapy and instead wanted to make each day beautiful for Oisin. He may have a short life but he would have a full one. They wanted to treasure every day they had left with him, and for him to have the best last days a three-year-old could wish for.
Barry's parents looked after Oisin's two-year-old brother Cillian, so they could enjoy Oisin's last days fully. Cillian accepted the situation as Barry and Sheila were open with him about what was happening to Oisin. They see how much that approach has benefitted Cillian now.
Sheila's parents, Rita and Rodney Wilton, who are based in Leeds, were also very supportive, and they visted often.
Sheila set up a blog called 'Butterfly Boy Oisin' and a campaign to make every day special for Oisin - the response the Bolands have received from it is nothing short of amazing.
The beautiful days included a magical trip to Euro Disneyland, opening the Disney store in Dublin with Lightening McQueen, a plane ride, a surprise tour of the local fire station, zoo trips, copious Santa visits at Christmas, fun farm visits at his grandparents', bake-sales planting bulbs for spring, and simple seaside trips.
"All of them were beautiful when you don't have much time: the reptile guy, watching him fly up into the sky in a plane, whizzing around in a fire engine, hugging Pluto in Disney, opening the Disney store, doing doughnuts in a race car, the vintage car that greeted him from hospital, digging up mud, having a cuddle with the dogs Bella and Honey, getting to spend Christmas Day with him and his incredible final day. The simple days around the farm were as treasured as any."
People donated directly to the Bolands or did fundraisers, and the Make A Wish Foundation made the Disney holiday possible. All the remaining proceeds are going to a memorial and research into DIPG.
Oisin passed away on January 18 this year.
"He never gave up," says Sheila. "He never retreated into his mind. He never lost his humour. He never lost his strong spirit. We will never forget his last day. We saw his incredible beauty and spirit and so much more than his failing body."
"He died very peacefully between us both, his mummy and daddy, in the big bed. He simply stopped breathing in his sleep, very quietly. Daddy put a hand on his heart, looked at me, and shook his head, 'He's gone.' Words I never wanted to hear.
Sheila's older sister Lisa wrote a lovely poem for the mass called Butterfly Wings, and Sheila put it on Oisin's grave. "I held Cilly in my arms during the burial and as the coffin lowered, I opened a box of 1,000 paper butterflies and told everyone, 'These are 1,000 butterflies, each with a prayer for Oisin.' Every single one was cut, painted and with a prayer for Oisin."
Sheila and Barry have been attending a bereavement support group, Anam Cara. There, parents who have lost children can meet and share experiences, so they don't feel isolated in their grief.
They also talk about Oisin with Cillian every day. He writes letters to Oisin for his coffin and Sheila and Barry think he is doing very well as he knows it is okay to be sad sometimes and cry. He is a joy and an inspiration to them.
Sheila's advice for other families with DIPG is to make each day beautiful for their child and to give them as much home-based care as possible. "Try to be strong about your decisions regarding treatment. There has been no known cure for the last 35 years. Think how you can make each day beautiful for your child, given that it is almost guaranteed they will not survive. When I wasn't in a place of fear, I saw just how incredible Oisin was. We all get one shot at life."
The Bolands are keen to set up a charity and support DIPG in Ireland, as most charities are based in the US. They are looking for contacts who can help them to find out about or steer this.
In Temple Street Hospital, Oisin received a biopsy where some of his tumour cells were removed. The cells were sent to Beaumont Hospital where they received confirmation of his diagnosis and the cells were donated to research.
"As a scientist, Barry (a pharmacology lecturer at UCC) scoured the world for the best research labs to give Oisin's cells to," says Sheila. "The biopsy cells were sent to Dr Chris Jones at The Royal Marsden in Surrey, UK where extensive genetic screening into DIPG is being conducted."
To donate to an Irish DIPG see butterflyboyoisin.wordpress.com
DIPG - Diffuse intrinsic pontine glioma
DIPG is a rare form of brain tumour in children that is inoperable. Due to the positioning of the tumour on the brain stem, it is nearly impossible to target without harming the brain.
Children with DIPG typically live for around 9 months after diagnosis.
DIPG affects around 200 children a year, mainly between the ages of 3 and 10.
The symptoms of DIPG can include loss of balance, difficulty walking, speech issues and double vision.
Patients can be treated with radiation, but in the last three decades no other treatment has been shown to extend life beyond 1-2 years.
Very recently, a breakthrough was made in the study of DIPG by researcher and neurologist at Stanford, Dr Michelle Monje.
Dr Monje edited a paper for the Cell, which showed how more activity in cerebral cortex affected high-grade gliomas - representing roughly 80pc of malignant brain tumours in people. Dr Monje discovered these tumours were using the main function of the brain - thought - to accelerate their growth. Brain activity could fuel the growth of the tumour.
Doctors could use drugs to slow the growth in patients and reduce mental activity, but that also inhibits them from learning or leading an active life.
This discovery has also opened the door into therapeutic interventions which might help DIPG patients.
Her team studied human glioma tumours implanted in mice. 'Optogenetics' is a method used which uses light to control brain cells, to speed up activity near the tumours. The result was that this high level of brain activity made the glioma grow at a faster rate.
Dr Monje is also looking at ways to decrease the growth of the tumours by disrupting the pathways from the brain activity to tumour growth in her research.