Thursday 19 April 2018

'After Twinkle, Twinkle, Little Star finished playing, he took his last breath' - parents of toddler (3) who died of brain tumour

Orna Brennan felt powerless watching her little boy fight for his life when he got an aggressive brain tumour. She tells Joy Orpen she is now dedicated to raising money for research into cancers that specifically affect children

Orna and Dave with their daughter Nia. Photo: Frank McGrath
Orna and Dave with their daughter Nia. Photo: Frank McGrath
The couple's son Seimi, who died aged 3 after a battle with cancer

When Orna Donnelly and Dave Brennan first met, they decided to put their respective travel plans on hold and see what happened. A wedding coinciding with the summer solstice in 2012, was the result. They settled in Balbriggan, Dublin.

Their lives were made complete by the arrival of their first child in May 2014. Seimi, who arrived four weeks early, weighed just over five pounds. However, soon after, he began making strange eye movements. They took him to the GP, who referred them to Temple Street Children's University Hospital.

Two days later, he was diagnosed with hydrocephalus. "I wasn't too worried, because some prem babies can have fluid on the brain," says Orna, a children's neurosurgical nurse.

Then, following an MRI scan, they learned that Seimi had a tumour in his brain. Naturally they were devastated, but they were comforted when they were told it was benign. A few days later, a shunt was positioned to drain excess fluid from the brain. And that seemed to be that, for the moment.

The couple's son Seimi, who died aged 3 after a battle with cancer
The couple's son Seimi, who died aged 3 after a battle with cancer

Three months later, Seimi had another scan, which revealed that, contrary to expectations, the tumour had grown, So a biopsy was done. A fear-filled week later, the Brennans learned their baby was suffering from a pineal parenchymal tumour of intermediate differentiation (PPTID). This affects the pineal gland, which produces melatonin, the hormone regulating sleep.

During challenging brain surgery in December, Seimi suffered a haemorrhage which led to paralysis on his left side. This meant surgery had to be abandoned. Doctors feared the paralysis might cause the baby to be unable to walk or to swallow. However, they hadn't banked on Seimi's inner strength. He soon began eating and showing signs of movement in the affected area.

Then, just before Christmas, while still hospitalised, fluid in his brain began seeping from the back of his head. A drain was inserted to ease the pressure. Nonetheless, he was allowed home for four joyful hours on Christmas Day. But the next day, his temperature shot up and he started vomiting. It emerged, he had meningitis, another serious condition. But staff at Temple Street pulled him through, and by mid-January, he was home again.

There followed a period of relative calm, which allowed Seimi to begin occupational and physiotherapy at the Central Remedial Clinic (CRC) in Clontarf. "He wasn't overly keen at first, but they did great work with him," says Orna.

Tragically, a year after he was born, tests revealed a nightmarish scenario. "They showed the PPTID was now behaving aggressively," explains Orna. "His spine was also coated in cancer cells. We were absolutely and utterly devastated - they couldn't offer us much hope."

At this point, Seimi was being shunted between Temple Street and Our Lady's Children's Hospital Crumlin because of the different specialisations he required.

In October, a central line was inserted into his chest, to facilitate the delivery of chemotherapy drugs. However, once the treatment began, his head swelled dramatically, requiring the line to be removed. A line was then inserted into his groin, but this caused clots. However, blood thinners did allow a line to be replaced in the chest. And finally, his chemotherapy could get under way; he was also allowed to go home.

"We had the best Christmas ever," says Dave, a teacher. "No hospital visits, just the three of us tucked up together, watching Seimi's favourite cartoons."

In January, it was back to Crumlin for more chemotherapy. After just three sessions, the signs were auspicious. "His oncologist said he'd made a spectacular recovery," says Orna "and would storm though the last three sessions."

And so, began a period of agony and ecstasy for the Brennan family. In March, Orna gave birth to Nia, Seimi's beautiful baby sister. However, soon after, Orna's much-loved father passed away. Then just after Easter, Seimi had a massive seizure, that resisted efforts by paramedics to stabilise him as they dashed to the hospital.

But, yet again, valiant Seimi bounced back and was able to go home. He completed his course of intravenous chemotherapy just before his second birthday in May 2016. The following month, Orna and Dave were ecstatic when their little boy got the "all clear".

He was able to live a pretty normal life at home for the next eight months. "He went to the CRC, where everyone adored him," Orna remembers. "Our extended families doted on him, while he and his sister loved each other. He was great fun to have around. It was such a good time. We even dared to plan things for the future, like him going to preschool."

But their beautiful bubble burst in February 2017 when scans showed the cancer was back, with a vengeance, in his brain and spine. "He was put on oral chemo to buy time and to make memories," explains Orna. "Which it certainly did - for three months."

Nonetheless, Seimi managed to have a wonderful third birthday, surrounded by friends and family. "He was always happy with a roomful of people," says Dave.

But there came a time when this brave little man could do no more. "In July, he started to go downhill," Orna remembers. "He'd stopped walking. His head ached, and he was on a morphine drip. In August, he stopped talking altogether.

"Last September 3, we were lying on our bed, cradling him, listening to music. He'd endured so much suffering, we gave him our blessing, and told him if he needed to go, he should. After Twinkle, Twinkle, Little Star finished playing, he took his last breath, and that was that."

Dave continues: "Everyone who met Seimi loved him. He was such a huge life force. No matter how sick he was, he'd always manage a smile."

Orna and Dave are planning to participate in the Great Ireland Run, which takes place on April 15 in the Phoenix Park. "We have seen too many children die from cancer," says Dave. "This is not a rare occurrence, as some people believe. So, we are dedicating our lives to raising funds in Seimi's name, for research into children's cancers. And that is why we will be running."

To enter online and for more information about the Great Ireland Run, sponsored by Garmin, see greatrun.org/great-ireland-run

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