A legacy for life – and leaving it

TALI FEINBERG

It was this moment that made Bloom realise that terminally ill children needed a hospice with specialised care to support them and their families through the horrendous end-of-life scenarios that no one should have to endure.

“I slept on a fold-out couch in the hospital for a year and a half. There are no beds for parents. They are doing their best, but resources are so limited,” says Bloom.

Another moment that stands out is when Rohan was bleeding from his nose and mouth, and he began to fight with the nurse who was treating him. “At this stage, he was an angry adolescent who had become a paraplegic due to the cancer spreading throughout his body. He didn’t want to be a cancer warrior, he just wanted to be a normal teenage boy, going on dates, and playing sport. He had huge plans. By the end of that incident, the nurse, Rohan and I were all covered in blood,” remembers Bloom.

It was not always like this. Rohan was a talented sportsman with the world at his feet. He grew up in Cape Town, attended Herzlia School, and Habonim camp, and had just been accepted into the prestigious boys’ school, Bishops, to complete his senior schooling.

“Everyone depended on him. If the cricket team wasn’t winning, everyone would say, ‘Don’t worry, Rohan still has to bat’,” says his father. With an easy swagger, a natural charm, and the all-round assets of a golden boy, Rohan Bloom was destined for great things.

So, when he noticed a sharp pain in his left rib after a cricket game in July 2014, he put it down to sports injuries. After all, he had just been made captain of the provincial cricket team, and that was on top of the waterpolo, rugby, and karate that filled his schedule. But after numerous tests, he was diagnosed with an extremely rare case of Ewing’s sarcoma, a deadly cancer that begins in the bones and is prevalent in adolescents.

After a gruelling fight, complicated by the fact that he was born with only one kidney, Rohan went into remission. Soon thereafter, still frail from his ordeal, he was picked for his new school’s cricket team. “It was both the happiest and saddest time of his life when, while on tour with his team in October that year, the pain returned,” says Bloom.

The cancer had come back, and it spread throughout his body. His family – including mom Kim and younger siblings Kieran and Carys – were told that Rohan was now terminal. Nothing more could be done to save him. “We never actually told him the cancer had spread so extensively,” says his father. “We wanted him to fight. Even though I wasn’t naïve, I told his doctor, ‘Watch, Rohan is going to beat this. He doesn’t know how to lose’.”

Yet, after enduring indescribable pain and indignity, confusion, and paralysis, Rohan slipped into a coma. Three days later, on 15 April 2016, he passed away.

The golden boy left behind a shattered family, blown apart by the bomb blast of illness, indignity and agony – but he also left a legacy. “I always knew Rohan’s name would be up in lights, I just never pictured it like this,” says Bloom. He is consumed by the wish that no other child should endure such horror in his last days. So, he began The Rohan Bloom Foundation, and its first major project is to build a specialised paediatric hospice in Cape Town.

At present, there is no specialised private children’s hospice in South Africa, says Bloom. Most terminally ill children die at home – be it in a shack or in a house – or in hospital, right alongside children who are fighting to live.

The hospice Bloom envisions, named Rohan House in his son’s memory, will be different. It will offer the best services in every sphere to a terminally ill child and their family. “The fact that we don’t have such a facility in 2018 is mind-boggling,” says Dr Michelle Meiring, the Chief Executive of Paedspal, a non-profit organisation that provides integral services to paediatric patients suffering from incurable illnesses. The organisation will play a major role in making Rohan House a reality.

For 14 years – the duration of Rohan’s life – Meiring has been trying to make such a facility happen. “I’ve seen children dying in terrible circumstances,” she says. “That’s why Rohan House will be accessible to all. There will be round-the-clock palliative care, accommodation for parents, art, music and play therapy, and respite care to give families a break.”

When Bloom and Dr Meiring found the perfect house for the hospice, generous donors from the Jewish community helped them to buy it. There will be many more opportunities to assist, from sponsoring a brick, to a room, to a bed for up to R25 000, the monthly cost of care at the hospice. The sponsor will be able to directly assist a specific child, and follow their journey.

In the words of Mattie Stepanek, a child who died from a life limiting neuromuscular illness, Rohan House will be guided by the principle that “Palliative care no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently.”

·         To learn more, like The Rohan Bloom Foundation page on Facebook, or contact Dr Michelle Meiring on drmameiring@gmail.com.