Monday 24 September 2018

Bouncing back - how Barretsown helps this young boy get over his tumour treatment

Daniel Fagan-Bourgon loves the children's camp Barretstown. His mother Maria tells Joy Orpen that his weekend there helped boost her very sick son's confidence and also brought a light back into all of their lives

Maria with her son Daniel. Photo: Tony Gavin
Maria with her son Daniel. Photo: Tony Gavin

Daniel Fagan-Bourgon (7) resembles a bright, shiny sprite.

Full of energy, laughter and curiosity, he's also a very perceptive boy. So, when he got sick recently, he would have been conscious that his situation was serious. But fortunately, this aspiring gymnast is slowly regaining his health and is now rearing to go.

No doubt his good recovery has been fostered by the support he gets from his devoted mum, Spanish-born Maria Bourgon; his Irish dad, Mark Fagan; and his older brothers, Gavin (12) and Oscar (9). They live in Celbridge, Co Kildare.

When Daniel was about three, Maria decided to leave her job in finance at IBM. "Having a third child as energetic as Dani, made me realise I had run out of hands," she laughs. So, while Mark did his bit as an IT manager, Maria kept things running smoothly at home. But then things started to go very wrong.

"In March 2016, Dani began waking up at night," Maria recalls. "Then one day, I noticed his tummy wasn't symmetrical. So I took him to the GP, who immediately referred him to Tallaght Hospital." Doctors kept him in overnight. Next day, following further investigations, he was diagnosed with a Wilms tumour - a kidney tumour.

Suddenly, the happy world the Fagan-Bourgons had inhabited was cruelly ripped from them. Dani was immediately transferred to Our Lady's Children's Hospital Crumlin. This was a double-edged sword, as Maria and Mark had lost their beloved five-day-old baby, Pablo, during open-heart surgery at the very same hospital some years previously.

However, they were much relieved to learn that Wilms was not the most life-threatening of the cancers that can affect children, and, crucially, it was treatable. Just a week after he had been taken to the hospital, Dani was allowed to go home. "A plan was already in place and he was having chemotherapy," says Maria. "It was incredible; I can't praise Crumlin enough."

In April, Dani had an operation to remove the tumour and the affected kidney. But unfortunately, the surgeon was forced to leave a sliver of the tumour in situ, as it was attached to a major blood vessel. Dani was then given more chemotherapy and radiotherapy to zap the last of the tumour. That all came to an end in November 2016.

The following month, Dani had a scan and got the all-clear, so the family could really celebrate Christmas. However, late in February 2017, the next scan brought devastating news - the tumour had grown back. "I could see from the terribly disappointed look in the consultant oncologist's eyes, that it had indeed returned," says Mark. "We already knew, that if it recurs, it's much more aggressive. That was very definitely the worst day of my life." His lovely wife can only shake her head sadly as this awful memory is reignited.

Mark and Maria were warned that Dani was facing a much more aggressive treatment regimen. This would involve being hospitalised for a few days every three weeks, while he had intensive chemotherapy. He'd then have a couple of weeks off before the next round. By now, Dani had lost all his hair, and had a Hickman line in his chest to facilitate the administration of fluids and medication. It was harrowing for all concerned, not least little Dani himself.

However, Maria had, the previous year, booked for the family to go to Barretstown, which runs specially designed, fun-filled camps for children and their families who are living with a serious illness. The families are supported by 24-hour on-site medical and nursing care.

"Every third week of his chemo, Dani would feel a bit better," she explains. "So we used that window to go to Barretstown. The voluntary helpers there are known as 'caras' and they make absolutely sure you all have fun."

Maria explains that they shared a comfortable bungalow with another family who had a child who was a cancer survivor. "He was bouncing about so much, he gave us hope," she says of that child, while adding that even though Dani was reluctant to participate at first, the caras soon had him joining in with all the other kids.

"They are very subtle and use play to get the shy children involved," explains Maria. "It was pure oxygen for us. It gave us the ability to breathe again, and it gave us hope. It also helped Dani to forget his illness for a while, and to regain his confidence and sense of fun. They really do look after your mind, body and spirit at Barretstown."

Dani himself beams when talking about his wonderful weekend there. "We had to hunt for five things in the grounds," he says, his enthusiasm brimming over. "And then we went to the treehouse restaurant to eat. We went fishing in the lake, and we climbed the high [climbing] wall." Other activities include archery, canoeing, horse riding, drama, and music. All are done with an emphasis on everyone having fun. The weekend was such a success, the whole family is eager to return.

However, once their break was over, it was back to Crumlin so Dani could continue having intense chemotherapy. And even though the scans were looking good, surgery was done in June of last year to make absolutely sure there was no evidence whatsoever of the cancer. And thankfully, there wasn't. Following a period of rest, Dani received high-dose chemotherapy and stem-cell rescue (autologous bone-marrow transplant) treatment. This meant he had to endure three weeks living in isolation (with his parents) in hospital.

When he came home, he had a feeding tube in place, while many of his organs had been affected by the chemotherapy. This spunky lad is still in recovery, but thanks to his great medical team at Crumlin, he is doing really well again.

"Dani is desperate to get back to normal," says Maria. "He loves swimming and gymnastics. But he can't go back to them, or to school, until his white blood cells are able to deal with all the bugs," explains Maria. "So, in the meantime, he's being home-schooled. He's also looking forward to returning to Barretstown."

Their experience was such a success, Maria is adamant that she will one day become a volunteer there. "I want to be part of the fun, and to smile at those families who are going through so much," she says.

If you are interested in volunteering, or in finding out more about Barretstown, see barretsstown.org or facebook.com/barretstown

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