10 March 2014, Feature
It’s natural to want to protect our children from what we ourselves are often afraid of. However, professionals agree that it is often better to be honest and open with them on the subject. In fact, studies unanimously show that children often know more than what we think.
While the whole subject definitely depends on the child and family in question, here are some pointers we’ve gathered on how the topic can be introduced gently to our children.
1. Honesty is the best policy.
The unknown is frightening, and a lot of unnecessary anxiety may be caused by what a child imagines from stray words he catches in hushed conversations, or from the unhappiness he observes in his caregivers. Explore what he already knows, move on together, and both adult and child will feel far less alone from there on.
2. Don’t beat around the bush
Euphemisms like ‘gone away’ and ‘going to sleep’ are confusing for children – and we wouldn’t want them to associate a travelling parent or bedtime with death! Experts advise using straight-forward words like ‘die’ or ‘dead’.
3. Keep with the ages
Children understand the concept of death and dying differently at different points of their lives. Young children might still believe that death is reversible (no thanks at all to violent cartoons) and, with ‘magical thinking’, may even feel responsible – it’s crucial to reassure them. An older child may on the other hand prefer to have factual information.
4. Strike when the iron’s hot
It’s best to leverage on a child’s curiosity, especially when it’s directed elsewhere that’s more impersonal – it could be a dead insect he may see, a dying plant, or something on TV. Conversely, there may be times when the child is fidgety, or refuses to make eye contact – classic signs of discomfort, and indicators that the topic might be better off dropped for the moment.
5. Love is all you need
It’s important to ensure the child knows that he or she will continue to be loved and cared for. It helps to validate their emotions with language and sympathy, and for the child to be able to communicate his or her feelings through play or art therapy.
A recommended picture book for younger kids is Nana Upstairs and Nana Downstairs.
Sources: Journal of Clinical Oncology, ehospice, cancer.net, webmd.com,
18 January 2014, Feature
By Geraldine Tan
Being a Medical Social Worker in Star PALS means more than providing financial assistance, community resources and counselling to patients and their families. It also means being a furniture mover, a grocery shopping assistant and a house cleaner.
It means singing silly songs, helping with the cooking and playing Pretend. Memorizing the names of K-Pop celebrities, drawing pictures of lions and monsters and learning how to play football.
Being a Medical Social Worker in Star PALS also means being 24/7 on call, to attend to patients and their families when they need me whether I am in a movie or a meeting, awake or asleep.
It means holding crying mothers tightly as they try to come to terms with the latest medical test results, listening to grieving fathers haltingly tell their stories, and deliberately giving siblings the extra attention and care they inevitably crave. It means knowing that some patients do not have long with us, and giving my heart to them all the same.
Being a Medical Social Worker means incidents like standing in front of our patient’s coffin with her mother, at her wake. Her mother clasped my hand in hers and spoke to her child, “Now that you’re in heaven, please keep your social worker jie jie safe and happy and healthy always, because she is our angel.”
Geraldine Tan, MSW for Star PALS, shared her experiences for an exhibition by Singapore Discovery Centre: Hope. Heart. Home. These photos were taken by Bob Lee for SDC. The exhibition will be at J CUBE until 15 Jan, and will then move to Temasek Poly, UniSIM HQ, ITE College Central, and Yishun JC.
10 December 2013, Event
In 2008, celebrity photographer Jeremy Cowart had the brilliant idea – for communities of photographers around the world to band together to give back.
That was the birth of Help-Portrait, and this year, its Singapore chapter had the generosity to give 20 of our Star PALS children and their families a chance to take a professional family portrait, totally pro bono.
What better way to tell a story of photo-taking than in photos?
1) The first batch of Star PALS families arriving bright and early in the morning at Jurong Bird Park, greeted by our wonderful volunteers.
2) Then came the make-up and hairstyling by volunteering professional make-up artists, and finally, the photo-taking itself.
3) Professional studio photographers touched up the photos to perfection.
4) Meanwhile Senior Minister of State Amy Khor graciously found time to grace our event over lunch, and see our children.
5) Our wonderful emcees, and performances by Lin Si Tong, Myla and Friends, the Caring Clowns, and Edwin the Magician, kept us entertained throughout the day.
6) Finally, families happily went home with their portraits.
7) All of this would not have been possible without our incredible volunteers and sponsors!
For the full set of photos taken that day, check out our Facebook album here.
08 November 2013, Event
‘It’s the first time we’ve eaten dinner alone together since Haikal was born!’ Madam Yusnani exclaimed, looking across at her husband.
Though certainly candle-lit (tea light-lit would be a more accurate description) the setting wasn’t quite as romantic as we would have liked it. However, this is already more than many of our Star PALS families have time for, with a vulnerable child at home who requires so much care – from feeding, to changing, to therapy.
So, during the Family Day Camp the Star PALS team organised, our patients like the adorable Haikal, Mdm Yusnani’s son, were cared for by our nurses, Medi Minders, and volunteers, while their parents and caregivers got a chance to relax properly and catch their breaths.
The event was set at the Siloso Beach Resort at Sentosa, and families were invited to stay overnight as a getaway. After most of the children were properly settled in in their hotel beds, the families set out for a luge ride, then enjoyed their lunch and short ice-breaking games at a sea-side pavilion.
After a quick rest in the hotel rooms, the families set out for the highlight of the event, the SEA Aquarium, this time with most of the Star PALS children getting out of bed to join us. Dinner in the evening and hydrotherapy the next morning rounded off the family getaway.
One of the parents shared, after her luge ride, ‘Though I still feel a little worried being away from my son, I feel so much more relaxed today.’
Which was great for us to hear, since that was exactly what we wanted: to care for those who are so often forgotten in this journey – the parents, the domestic helpers, the children’s siblings.
For the day to day respite care, our trained Medi Minders are on hand to help our families take a break every once in a while. Take a look at all the photos taken that night on our Facebook album here.
05 September 2013, Our Stars
We met with the Star PALS team while we were still in hospital with our son, Timothy.
You see, Timothy had been admitted on the 6th May 2012 for aspirational pneumonia, when he stopped breathing at home that evening. My son was a special boy… my angel. He had been born with cerebral palsy and epilepsy. He was also blind, couldn’t talk, and had several holes in his heart.
Timothy was not meant to be with us for very long. From the time he was born and with every visit to his doctor at the hospital, we were reminded that his lifespan was short. At a young 16 years, Timothy had come to beat a lot of the odds, and lived a comfortable and happy life with his dad, elder brother, and was cared for by me.
The day he was admitted to hospital, it was not expected that he pull through the first 24 hours. But he fought for his life for another two weeks in the Paediatrics ICU. It was then that I was told that should Timothy survive, I could take him home and he would need an oxygen concentrator, a BiPAP machine (to assist with his breathing), and I would constantly have to keep his airways cleared by suctioning. I was familiar with the BiPAP machine but everything else was new to me, and I was afraid.
But our Timothy took another two months in the hospital. After such a long hospital stay, we were ready to go home, where he could be more comfortable and at least have more time again with him as a family. I felt encouraged when a social worker and some of the doctors from NUH talked to me about HCA’s services and the palliative care it provided for children with terminal illness. When they asked me if I would be interested to use Star PALS’ services, I said “yes” immediately, and our first meeting was a couple of weeks before we went home.
A day after leaving hospital and caring for my son at home, on my own, Dr Chong, Nurse Lily and Nurse Alice paid me a visit. I admit, that I breathed a sigh of relief the moment I knew they would be visiting because I was on unfamiliar ground, now looking after a seriously ill child who didn’t have much longer to live.
The doctors and the nurses from HCA would visit weekly and every time they came, I felt encouraged and motivated to do the best for my son. Our goal was to keep him comfortable and without any pain for most of the time.
My fears were slowly lifted as besides helping me with his medical treatments, I also received a good dose of encouragement and empathy, with real care. I was always told that the road we faced, though difficult, would never be a lonely one and that there would always be someone there to help us along.
HCA really came through on all their promises; Timothy’s medical needs were seen to promptly and professionally at all times. It was like having an extended family which sailed with us through both choppy seas and calm waters. There was always a listening ear and caring presence when Karen, a Star PALS counsellor, was also introduced to our family. My doubts on my son’s medical issues were handled most gently by Nurses Lily and Alice, who were always my bastions of comfort and from whom I drew strength. Dr Chong especially, gave us personal yet professional medical advice. All this helped me cope with the feelings of sadness, and the heartbreaking knowledge that my son was leaving.
Timothy passed away on 27th November 2012.
At no point did I feel we were alone to handle this painful journey. We spent four months with our new family at HCA, and we will never forget the kindness, the care and boundless help they have been to me and my family – and to our special little Angel Timothy.
God bless you all and thank you, thank you, thank you…
03 September 2013, Event
It’s in the parents, family, caregivers, nurses and doctors who work so hard for our Star PALS children that we witness a unique brand of unconditional love – one that, by virtue of the very fact that it never gives up, willingly leaves itself vulnerable.
The lyrics above, from Corrinne May’s If you didn’t love me, portray the power these special people’s love had on the children, giving them the strength to fight their hardest.
The live performance of this song was just one part of the Star PALS memorial night, a poignant evening of both tears and laughter. That night, we celebrated not only the bright lives of our shining stars who have passed on, but also the incredible capacity for love their families and caregivers have.
The event kicked off with the 70 attendees writing notes to the children and to thank others. Tealights representing the light each child brought were placed in blue candle holders decorated with the children’s names. Dr Akhileswaran, CEO of HCA Hospice Care, and Dr Aimee Seet, Council President, lit a candle for the children whose loved ones could not make it that night.
The event ended with a sparkler session by the sea, under a clear night sky which, fittingly, was dotted with stars.
One of the children’s parents translated a poem she recently published, in which she expressed how her son had strengthened her faith as she struggled to come to terms with the grief of losing him. She also shared how she keeps a photo of him in her car so that she can chat with him when driving alone.
Even as we fondly remember these children as the bright stars who continue to be a guiding light in our lives, we must never forget to salute the unsung heroes around them who have, with their undying love and care, been indispensable stars in these children’s lives.
Star PAL’s full range of holistic palliative care services covers not only medical care of children with life-limiting illness, but also psychosocial and bereavement support for their loved ones and caregivers.
Take a look at all the photos taken that night here.
29 August 2013, Volunteer Spotlight
Since June this year, Madam Sapiah has been contributing her talent and time by baking birthday cakes for children under the Star PALS (Pediatric Advanced Life Support) programme.
From Barney the Dinosaur to a dainty doll the little birthday girl could not bear to eat, these cakes are tailored to each child by Madam Sapiah with the help of Geraldine Tan, Medical Social Worker for Star PALS.
As a result, the children never fail to be delighted when they lay eyes on their personalised cakes. One of the children, a young fencer, had given her an immediate ‘thumbs up’ when he saw the fencers on his cake, recalled Madam Sapiah with a smile.
Beyond their colourful fondant figures, Madam Sapiah also invests much care and thought into the design of each cake. For example, she once chose to bake a truffle cake for a child who experiences difficulty biting, giving him the chance to enjoy the cake by licking it instead.
‘I feel happiness especially when I see parents treasure moments with their children,’ said Madam Sapiah when asked what motivates her to volunteer her talent this way.
Coming from Madam Sapiah, these heartfelt words hold a world of meaning.
Her own son Faridz had been part of the Star PALS programme, but passed on last June at the age of 14. It was because of him that she had initially started baking, as she needed a profession that would allow her to stay home to care for him.
‘After Faridz passed on, I just felt empty,’ Madam Sapiah shared. ‘I needed to go out to do something to help others.’
She offered her help to the schools Faridz had previously attended – Rainbow Centre and Metta School – before approaching Dr Chong Poh Heng, Programme Director of Star PALS, who suggested that she bake cakes for the Star PALS children.
On watching the children receive the cakes, Madam Sapiah said, ‘When I saw the children so happy, the emptiness went away.’
Madam Sapiah is now also training to become a Medi-Minder – a special breed of medically trained volunteers who provide respite at home for caregivers. By taking care of children in the programme, they provide a chance for caregivers get some quality time for themselves.
‘You can feel love in the food you eat,’ said Madam Sapiah, explaining her passion for cooking and baking. Through her baking, the love she has shared with these families has helped to perfect these annual celebrations of life between parent and child – certainly creating moments to treasure.
The Star PALS team believes every individual is capable of making a difference, and would be pleased to accept any form of help you would like to contribute. Find out how you can help here.