Perched on a chair in her immaculately-cut pant suit and heels, Her Royal Highness Princess Dina Mired of Jordan exudes an unmistakable regal presence. But her wide welcoming smile as she extends her hand to me in greeting, somehow tells me that she’s as down to earth as they come. And that somehow quells my jitters. After all, it’s not every day one gets to meet a real-life princess.
Expecting grandeur, I’m a little taken aback to arrive at the National Cancer Society for our interview. I’m just as pleasantly surprised to see how far removed the princess is from the regal standoffish demeanour I had expected of her. There aren’t any formalities, no pre-interview lessons on how to mind my p’s and q’s, no bodyguards, or handlers and hangers-on hovering nearby as we sit in a less than opulent meeting room to talk.
She’s both princess and activist. And that dual role sits well with her. “My title as a ‘princess’ comes with a great responsibility,” she declares, adding that her role as a global advocate for cancer control and non-communicable diseases is something she takes seriously. There’s a personal motivation behind her drive, she admits. “My other title is that of ‘mother of a cancer survivor’. I’m privileged to be in a position to help parents and caregivers who love their children just as much as I do, mine.”
Mired is also the president-elect of the Union for International Cancer Control (UICC), the largest international cancer-fighting organisation dedicated to taking the lead in convening, capacity building and advocacy initiatives that unite the cancer community to reduce the global cancer burden.
She’s in town to promote the World Cancer Congress (WCC), an award-winning international conference (an initiative of UICC) to be held for the first time in Kuala Lumpur from Oct 1 to Oct 4 this year. The congress aims to encourage effective knowledge transfer and best practice sharing amongst more than 3,000 global cancer control and health experts.
“I was elected primarily because I can bring the patient’s voice to the spotlight,” she says earnestly, adding: “I may not have a medical background but as a mother of a cancer survivor, I present a unique perspective on the issues facing cancer patients and I recognise the need for equitable and qualitative cancer care for everyone.” It’s extraordinarily plucky and self-possessed to turn a vulnerable, private experience into reportage but the princess is remarkably candid about her experience. “If my journey can help someone and make a difference, then it’s worth talking about.”
Hit by cancer
Born Dina Mohammad Khalifeh, she married HRH Prince Mired Bin Raad back in 1992 and soon became a proud mother of three children, Princess Shirin, Prince Rakan and Prince Jafar. When her second son Rakan was diagnosed with Acute Lymphoblastic Leukaemia (ALL) a few days before his second birthday in 1997, Mired was thrust with yet another new role — that of a caregiver.
“I tell everyone this. I didn’t choose cancer. Cancer chose our family,” she remarks drily, her eyes misting over as she continues to recall: “We went through the whole gamut of emotions when we first found out: shock, sadness, helplessness, worry, guilt. We kept asking ourselves, ‘What did we do wrong? Why us?’”
At the time, the family was living in England. After his diagnosis, Rakan began to receive treatment but his cancer relapsed after 18 months of chemotherapy. The family then headed to Boston where the toddler received a bone marrow transplant donated by his older sibling Shirin at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Centre. “We count ourselves lucky to have been living in England at that time because Rakan wouldn’t have been able to get that treatment he desperately needed in Jordan,” she confides.
Back in her homeland, Mired tells me, Jordanians had few, if any, treatment options. Around the time of Rakan’s diagnosis, the Al-Amal Centre (in Arabic, amal means hope) — the first centre for cancer care in Jordan — was only just opening. At that time, cancer was so taboo, Mired says, that the word was intentionally omitted from the centre’s name. “We were fortunate enough to be able to give our son the chance for a cure. But what about cancer patients who were back in Jordan? Those who didn’t have the financial means to get the treatment they needed?” she poses.
It was a tough road to see her son through the entire process. “You’re suddenly faced with such a traumatic disease. We’re not talking about months here; we’’re talking about years of being under tremendous stress as the treatment itself is very harsh,” she says. Both husband and wife steeled themselves to be strong and focus on saving their child.
“We did our best to be the best parents we could be for Rakan,” stresses Mired, clapping her hands to underscore her words. “We updated our knowledge about his medical situation and we were very hands on in taking care of him because in a way, as parents, you’re robbed of control and you want to do things.”
When a child is diagnosed with cancer, family dynamics, Mired attests, will change. Those changes can be extra hard for their siblings. Her eyes glistening, she recalls: “Shirin was 4 at that time. And it did affect her. Whenever she caught a fever, my eyes would betray me. I would not be as worried if she had fever but if Rakan caught one, it’d be a different case. Children pick this up. They don’t understand.”
Healthy siblings have the highest unmet needs in families affected by childhood cancer. They may feel great sadness, fear and anxiety, as well as more complicated emotions such as guilt, jealousy and resentment. Because so much focus is on their brother or sister, they may feel that their needs do not deserve to be met and that they have no right to complain.
Mired recalls wryly: “Shirin would visit Rakan at hospital and she’d find her younger brother sitting like a lord on the bed ordering things while we’d run around like slaves to him — simply because he was in pain. She didn’t witness the horrible procedures he underwent so it’s little wonder that she did feel a little left out.”
When the 4-year-old had to donate her bone marrow, she looked forward to it. “She was packing as though she was going to Disney World!” exclaims Mired with a laugh, adding: “She so wanted to be in hospital thinking that this brother of hers had all this attention and presents. Even if we gave her presents, it wasn’t the same.”
Her eyes glistening with unshed tears, she recounts: “I remember her asking me if there’d be any visitors coming to see her. When her school asked how they could support, I simply asked ‘Please come and visit!’”
After regaining consciousness from the anaesthesia, Mired recalls with hearty laugh that her daughter opened an eye and asked pointedly: “Mama, where are the visitors?” Her laughter subsiding, she adds softly: “Shirin is now 25. But I still tell her to this day: ‘Shirin please, if you ever felt you were neglected, we’re very sorry. We know it was very difficult for you as well.’”
Journey to activism
When they moved back to Jordan in 2000, Mired decided to take the insights she gained from her experience with Rakan and make a difference. She began working for the King Hussein Cancer Foundation in 2002 which is associated to the Al-Amal Cancer Centre. “The taboo concerning cancer had to be dispelled. One of the first things I wanted to do was to change the name of the cancer centre,” says Mired.
She insisted on the word ‘cancer’ being put into the name of the centre. “If you have an enemy, how can you fight it without acknowledging it? I wanted to dispel the fear about the word,” argues Mired. The centre was renamed the King Hussein Cancer Centre in honour of the late King who died from cancer complications. The late king was treated at the Mayo Clinic in the US, but it was his dream to have a cancer centre in Jordan.
“Our beloved King Hussein was one of the first high level people to dispel the secrecy and taboo around cancer. He appeared on CNN while he was fighting cancer without his headdress to show that he was bald. He was the first one to say: ‘Look, cancer can be treated. Don’t be afraid of it. Face it head on,’” says Mired with pride, adding: “That’s the same fighting spirit I wanted the centre to embody. I wanted Jordanians to know life doesn’t end with cancer. You can still resume your dreams and aspirations. In fact, you can do it better because you realise that time is of the essence.”
For the next 14 years, Mired served as director of the foundation, raising funds and spreading awareness. After transforming the foundation into an internationally known brand and leader in the global movement for people affected by cancer, she stepped down from that position in June 2016.
In November the same year, she was voted in as president-elect of the Union for International Cancer Control (UICC). When Mired steps into the position come October 2018, she’ll be the first Arab and the first non-medical professional to be president of the UICC.
“Honestly, if I’d thought years ago that I’d become the first Arab Muslim person to represent the union, I wouldn’t have believed it. But this is life. It puts you on a path. I’m just so glad I was part of this journey,” remarks Mired. It wasn’t a road she planned on taking, she acknowledges, but she adds determinedly: “There’s a reason why I was put on this path. So I’ll do all I can to advocate and speak on behalf of cancer sufferers everywhere.”
“Time’s up,” says somebody half apologetically and I can see the relief in her eyes. “Is it really?” she asks hopefully and I can’t help but laugh. I understand her weariness. She’s been doing interviews all day and the rest of her packed schedule is dedicated to meetings with leaders of Governments, members of the Malaysian royalty and diplomats while promoting the upcoming World Cancer Congress hosted by the National Cancer Society Malaysia (NCSM).
“It’s a packed schedule,” she concedes with another laugh, before concluding: “We can all do what we can — as much as we can — to contribute in the fight against cancer. Whether you donate towards cancer research, help fund an underprivileged patient’s treatment cost, fight tobacco or help promote healthy living — we can all do something.”
For more information on the World Cancer Congress, go to www.worldcancercongress.org