Latest News

LEARN @ STARPALS: PAINTING WITH COLOURS OF THE WIND

Event Details:

Date: 18 Jan 2017, Wed

Time: 8.30am – 1.30pm (Registration begins at 8.00am)

Venue: HCA Hospice Care Auditorium, Level 3, 12 Jalan Tan Tock Seng, Singapore 308437

Fees: Free (First come first served basis, limited to 30 participants.)

Kindly direct enquiries to Star PALS, Cindy Tan at CindyT@hcahospicecare.org.sg / 6891 9398

Workshop Synopsis

It can be intimidating for healthcare professionals to talk to children who are facing death. We may not feel comfortable engaging in conversation with children who are at the end of life because we are all trained to cure. While the private worlds of dying children remain a mystery to many, for those of us looking after them, it is critical to find ways to understand their experiences, to customise management plans that truly meet their needs. Most of these discussions are often conducted with parents. Timely conversations about treatment options before a medical crisis develops can be very helpful or even therapeutic for parents. In this workshop, we hope to share some practical approaches in talking with children about death and dying. Tips for conducting family-centred discussions about a child’s emergency care plans will also be shared.

Who Should Attend

This workshop is relevant for nurses, social workers, paediatric residents and paediatric palliative care practitioners who want to have a basic understanding in managing end-of-life issues with children.

Programme:

8.00am:   Registration

8.30am:   Opening address

8.45am:   Talking to children about death and dying – by Nurse Manager Lily Li

10.15am:   Tea break

10.30am:   Discussion on paediatric advance care planning – by Dr Richard Yap

12.00pm:   Q&A

12.30pm:   Lunch

Speakers:

0845377a-487b-484c-828d-53e2a04f5735

Dr Richard Yap, HCA Hospice Care, Star PALS Resident Physician Dr. Richard Yap obtained his Graduate Certificate in Health Care (Palliative Care) from Flinders University, Australia in 2010 and Diploma in Palliative Medicine from the Academy of Medicine, Singapore in 2012. He is an experienced Resident Physician with Star PALS.

 

nurse-lily-li

Lily Li, HCA Hospice Care, Star PALS Nurse Manager Lily has 17 years of experience in both women and child nursing care. She was previously working in children’s intensive care before joining HCA Hospice Care. At present, she is the Nurse Manager in Star PALS.       Both Dr Yap and Lily have been with Star PALS since its inception in April 2012. CNP and CME points issued for the workshop

Click here to register for the workshop.

5 Ways to Cope with the Loss of a Child

grief_canva

By Geraldine Tan-Ho, Counsellor (Star PALS, HCA Hospice Care)

The loss of a beloved child is the most devastating experience a parent could go through. Contrary to popular belief and teachings, there are no specific ‘stages of grief’ that a person will undergo after a loss. Rather, there are universal emotions that a bereaved person will experience, such as sadness, anger, guilt, disbelief and a great sense of longing for their loved one.

Grieving the loss of a child is a lifelong journey. This does not mean that the pain a parent feels, will always be just as intense as it was in the beginning. Many parents describe making meaning from their child’s life and death, finding inspiration from their child’s strength and loving personality and feeling gratitude from having time together with their child, no matter how short. These reflections help them greatly, in coping with the loss of their beloved child.

Grief is a multi-layered response to loss and is therefore not simply about having painful emotions, though these are generally the first to be felt. The sadness and pain of the grief journey is also often accompanied by heartwarming moments and memories, uplifting thoughts and revelations, as well as appreciation for life and the love received from supportive family and friends.

dsc04950

(Star PALS Memorial Evening 2016)

Just as how each parent’s love for their child is unique, so will their grief journey also be unique to themselves. Some general guidelines that may help in this journey:

Grief has no time limit

Expecting yourself to stop crying about your child or missing them in 6 months or 6 years after their death will simply put additional stress and other negative feelings such as guilt and anger on yourself (and sometimes others). Grief is a lifelong journey. Some parents find that their painful emotions come in smaller and less frequent waves as time goes by; others maintain that these emotions stay the same. Everyone goes through a different process – there is no ‘too short’ or ‘too long’ duration to grieve.

Give yourself permission to feel

There is no wrong or right way to feel after the death of a child. Some parents feel relief after a long and tumultuous caregiving journey, while others could feel numb and emotionless. Some parents feel disappointed with their child for ‘giving up’ after all their efforts for treatment. Others feel angry with God for allowing their child to die. Do not blame yourself for feeling what you may think are ‘inappropriate’ emotions. Should these emotions be overwhelming and disturb you greatly, talk to someone whom you know would be empathetic and non-judging.

Give others permission to grieve in their own way

Perhaps your spouse seems unaffected by your child’s death, going to work and watching soccer matches as if nothing has happened. Or perhaps your children do not want to talk about their sibling at all and you wonder if they even miss him or her amidst their busy school life. Not seeing others grieve the same way as us may feel isolating, confusing or upsetting. Keep in mind that everyone grieves in their own way and copes with their grief in their own way too. Give them time and space, just like how you would appreciate your own time and space to cope with your grief.

Spend time with yourself and others

The sadness of grief can be overwhelming physically, emotionally and mentally. Some parents prefer to fill their day with activities in order to distract themselves from the pain. Try to take some time to be with yourself and your emotions. This can be scary and painful, but suppressing grief constantly could be damaging to your grief journey in the long term. Because grief is unique and personal, other parents may find themselves wanting to be alone all the time because they feel that nobody would understand them anyway. Giving yourself the opportunity to experience love and support from those who care about you, can be a great source of comfort. Some parents who are not ready to meet up with family and friends find comfort in simply connecting via text messaging or social media.

Be aware of how you are responding to your grief

While there is no right or wrong way to grieve, there are times when the pain can be so intense that you may find yourself responding in ways that are harmful to yourself or others. This can include binge-drinking, being reliant on drugs and medication, having thoughts of harming yourself or others, or being unable to perform basic care for yourself (eg. bathing, eating). Talk to someone you trust or a social service professional if you find yourself or your loved one responding to grief in harmful ways.

Be A Source Of Support

If you know of a family grieving the loss of their child, here are 4 simple ways you can support them in their time of need.

You don’t have to ‘make things better’

We come with our own emotions and opinions about what has happened, or what should have happened. Be sensitive and respectful to the bereaved parent. They need our love and support, rather than opinions or judgments. Being with a bereaved parent requires an open mind and an open heart. Avoid using cliches like “Time will heal all wounds” or “Be strong, your child would not want to see you cry”. Be prepared to be with someone in great pain and instead of aiming to ‘make things better’, aim to be supportive and loving.

Talk about the child and use names

Some people are worried that ‘reminding’ the bereaved parent of their child would bring further sorrow to them. This worry is unfounded, because parents remember their children everyday, whether or not someone mentions them. Bereaved parents find comfort in hearing their beloved child’s name spoken and knowing that others remember their child as well. Talk about the good memories you have of their child, or respectfully ask them to tell you more about their little angel if you have never met them.

Ask them what they need

Trying to support a bereaved parent can be stressful if we are filled with uncertainties about what they need and how much we should do or say. The best way to eliminate unnecessary stress for both sides would be to ask them what they need. Simple questions like, “Would you be okay if I check in with you every now and then?”, “May I come to visit you this week, or would you prefer to let me know when you’re ready for a visit?” and “Would it be helpful if I bring over a cooked dinner for the kids every Monday?” help family and friends get a better idea of what their bereaved loved one really needs.

Understand that parents need time and space to grieve

Perhaps you are worried or even a little hurt that your good friend or close relative is not turning to you or not letting you visit them in their time of grief. Try to understand that this is normal and think of other ways you can show your concern and love. A simple check-in or ‘thinking of you’ text message can go a long way in giving a bereaved parent comfort. Respect their boundaries and they will contact you when they are ready.

(Source: The Barnabas Center)

The loss of a child is a life-changing experience. It brings uncharted pain, renewed self-discovery, meaning-making and unexpected insights. Whether we are making this journey ourselves, or sharing in a part of it, the grief journey of a bereaved parent is a sacred and essential tribute to the life and memory of a dearly beloved child.

Splash with Deutsche Bank!

20160625_110152

We had a splashing good time with our beneficiaries from Star PALS at Punggol WaterPlay and the supportive staff from Deutsche Bank Singapore!

It was a refreshing time for caregivers and the family to gather, relax and recharge.

“I am heartened by the works of HCA Hospice Care, enabling patients and their loved ones to create precious memories to find comfort in one day, enabling patients to finish their live journeys well, in the comfort of their homes and providing support to their loved ones,” says Ai Cheng who never fails to be enthusiastic in the presence of the little ones.

“Let’s do it again!”

Without hesitation, Ai Cheng is ever ready to take up new projects and organised outings. She hopes to organize more events where patients can participate, and reach out to more families – they need not be alone in their journey.

 

20160625_103441

“There is always the apprehension if beneficiaries will find the event enjoyable. But after the event, I’m glad to see them enjoying, happily interacting and playing with the volunteers,” says Ai Cheng, spokesperson of Deutsche Bank who strongly believes in the cause.

Volunteers from different divisions of the bank, ranging from front office to infrastructure/support functions usually get together to render their time and efforts for the beneficiaries at HCA Hospice Care.

20160625_112233

The fear of not getting enough volunteers and medical attention which may be needed in the course of the event worries Ai Cheng the most. However, these proved to be unfounded.

Families were swarmed with the love from volunteers and everyone felt assured with Dr. Ann, Star PALS medical doctor in attendance during the event.

20160625_110228

 

“I am especially encouraged when a mother told me that the event is one of those few occasions where she can bring her child out. Even though the child cannot participate in the water play, there is that festivity and atmosphere that she can feel part of,” says Ai Cheng. These are what motivates her to carry on doing what she does for HCA Hospice Care.

HCA Hospice Care is privileged to be the chosen beneficiary of Deutsche Bank.

Deutsche Bank Singapore started collaborating with HCA Hospice Care in August 2013. They’ve participated in many voluntary events such as outings with HCA Day Hospice patients to spring cleaning for our home hospice patients.

 

20160625_103808

 

Last year, HCA Hospice Care was nominated as one of the four beneficiaries of Deutsche “Donate-a-day” campaign where staff donated a day of their salary. They have been an extremely supportive sponsor and there are countless things to thank Deutsche Bank for and the list continues.

Like our Facebook for more pictures and updates! You may visit www.starpals.sg to find out more about Star PALS and the work we do.

Santa Claus is coming to town!

12370726_941075155928048_6371813902642263032_o

Why are we talking about Santa Claus when Christmas is still five months away? Well, Star PALS would like to extend our appreciation and thanks to Be MySanta in this issue of HCA Connect!

Be MySanta is an annual non-profit initiative that matches Christmas wishes from children of selected beneficiaries to kind donors also know as “Santa” who secretly surprises children with their needs and wants.

“Through Be MySanta, we want to show that Christmas remains an occasion for us to show love and care for fellow beings and strangers,” says Jacob Toh who started this initiative with his wife in 2009.

The outreach has touched the lives of more than 400 underprivileged children across six children homes in Singapore since then, with a common motive – to spread the festive joy to as many children as possible.

Star PALS had the privilege of being one of the six children organisations that have been blessed by the works of Jacob and his team.

“We identify strongly with the work the organisation is doing and more importantly, it was personally a very meaningful thing for us to bless these children,” says Jacob.

Patients from Star PALS simply answer a questionnaire specially tailored for them. After receiving the forms, Jacob and his team would actively reach out to volunteer donors and these “Santa(s)” will get into action and purchase meaningful gifts that they think the children would fancy.

12370830_941075159261381_932130489576539832_o

Collection booths were plotted all across Singapore last Christmas for the nurses to collect the presents which were delivered to the beneficiaries thereafter.

The presents range from simple stationary sets to extravagant presents such as a digital piano which was placed at a children’s home for all to enjoy.

“There is always a burst of joy and excitement when they witness the less fortunate children benefitting from our annual event,” exclaims Jacob. “Every Be MySanta event leaves a fuzzy feeling among those who take part.”

12375009_941075319261365_3811466078120334463_o

When asked if he would continue investing in the lives of beneficiaries from Star PALS, Jacob replies with a resounding “Definitely!”

It will be Jacob and his team’s fourth year working with Star PALS and he hopes to continue this meaningful and influential project in the years to come.

“Be MySanta brought many happy smiles to our children (and parents) in Star PALS. We see how the volunteers really put their hearts in choosing an appropriate gift for each and every child,” says Serene Wong, nurse from Star PALS. “Thank you for making a difference and sharing joy with what you do!”

Star PALS is immensely grateful to these group of generous donors.

In many ways, Jacob and his team have grown together with the organization and got to know the children better.

“Giving costs you almost nothing but benefits you immensely,” says Jacob who strongly believes in promoting the spirit of giving and continues to put it into action as he partners with Star PALS. “It is very satisfying to know that in our small little ways through Be MySanta, we are able to make these children happier.”

Visit www.starpals.sg to find out more about the services we provide for children with life limiting or life threatening illness. If you wish to participate or donate, please do not hesitate to click here.

Muhammad Khairul Ikhwan expresses Hope through his own Art Exhibition

DDC_1001

Life took a turn for the worst when happy-go-lucky and out-going art student Muhammad Khairul Ikhwan, 23, was diagnosed with Stage 4 colorectal cancer with a prognosis of two months, in September 2015. He was subsequently referred to Star PALS, a paediatric palliative care programme under HCA Hospice Care, when Nurse Nicole Peng discovered his talent as an artist.

DDC_0946

“I simply wish that he can do something that he really wants to do in this lifetime. If Star PALS can help to make his dream come true, why not?’ says Nicole, Khairul’s primary home care nurse.

Photo 22-4-16, 8 26 39 PM

The effects of Khairul’s cancer caused a whirlwind of changes in his life. His vision and hearing, both of which are important “tools” for him as an artist, were disrupted. Yet he neither feels defeated nor dissuaded. Khairul has managed to outlive his prognosis and has fulfilled his bucket list of hosting a solo art exhibition.

The flamboyant life he once led has given way to one that is constrained by regular medical reviews and chemotherapy treatments. Through it all, Khairul remains positive and upbeat.

DDC_1041

Khairul called his art exhibition HOPE – simply and powerfully titled. The exhibition follows his artistic journey of his battle with cancer, portraying how each individual ruminates and reflects on the idea of hope differently, casting wider interpretations on the very essence of life and living.

On the 21st April 2016, Khairul finally saw his wish come true.

We were honoured to have Mr Ong Ye Kung, Acting Minister for Education (Higher Education and Skills), gracing the evening’s event. It started with a walk through the corridor depicting the mind and heart of the artist himself. Hanging from its walls are 87 pieces of original artwork created by Khairul and seven fellow artists who have followed him on this artistic journey mapping out his ongoing battle with cancer.

DDC_1025

The piece enclosed in a display case caught the most attention. It showed a vibrant multilayered pyramid of cloths with a pair of sparkling shoes seated on the top – symbolizing the clothes that Khairul fashionably dons on daily.

The walk continues with a stunning array of artworks revealing Khairul’s innermost thoughts and feelings, expressing different phases, thoughts and views of freedom, beauty and peace amidst the fear he has to go through. Beneath the aesthetics and beauty of Khairul’s designs lie a simple individual pressing on to encourage his loved ones, friends and fans alike of the humanity and hope he discovered on the journey.

DDC_1055

“Somewhere around the world lives another soul who suffers the same pain as you do but that soul wishes to continue to live on in this world, because they believe it is not their time to leave yet and also because they desire to share and create many more memories for themselves. It’s because of these souls that I press on”.

Khairul’s message is clear, laid bare, raw to the touch and tender yet poignant and influential – to fill himself and ourselves with light and Hope, despite the darkness of fear and pain and doubt. Despite all that he has lost, he has gained an acutely heightened sense of clarity, vision and purpose. He continues to dream and it is this never-ending dream that will persist and shine and propel him out of his sickness, and send his ideas, his thoughts and feelings flying towards the dawns of countless tomorrows.

DDC_1105

The event was a success and everyone went home with a new understanding of hope, a lasting gift, his ever-growing legacy – HOPE in all circumstances.

Khairul’s life exemplifies HCA Hospice Care’s aims to provide the best quality of life for patients with life limiting illnesses by delivering professional palliative care and providing compassionate support to their families. Like us on Facebook for the event photos or visit www.hca.org.sg to find out more!

“…God decides how long I will live”

Star PALS Sharon_2016-03-02_Photo by Lawrence Loh-29

9 year-old girl, Sharon Callista Rain, suffers from bone cancer since September 2015.

Despite being wheelchair bound, Sharon’s maturity and bravery evidently shines through her life and never fails to brighten those around her. It is not easy for anyone to cope with an illness, what more for a young girl who used to actively model for children’s wear, swim, dance and run.

Star PALS Sharon_2016-03-02_Photo by Lawrence Loh-18

With her hair neatly tied back, big wide eyes behind thick, curly lashes, Sharon travels around in a wheelchair hugging her colorful “My Little Pony” pillow, all the time.

“I only like “My Little Pony”. I do not really like the rest of the cartoons. I enjoy watching Pony on Youtube. I also enjoy playing the keyboard,” says Sharon as she described her typical day at home. “In church, I play with Evan.  She is my best friend. I love school and the best things about school are my friends. I like to play with them. I want to learn more. Maths and Science are my favorite subjects.”

Linda Rain, Sharon’s mother and sole caregiver accompanies her every step of the way. Her love for Sharon is greatly seen through her disposition and the excitement as she talks about her daughter’s experiences as a child model. Heartbreaks and uncontrollable tears stream down as Linda shares Sharon’s photo while she was still a young active model, participating in competitions and games.

IMG_3916

IMG_3910

On 9 Sep 2015, Sharon started feeling pain in her back.  After visiting the doctor who prescribed her some medicine without detecting any serious illness, she went home.

However, on 27th September 2015, Sharon told her mum she could not feel anything in her feet. The doctor advised that her spine was infected.

They went for further checks and discovered that it was Ewing Sarcoma, a rare disease which is found in the bone or soft tissue. Surgery was performed in October 2015 and Sharon had to be hospitalized for a month. Chemotherapy and radiotherapy was recommended. However, there was still no improvement.

With the support of friends in church, their community and family, Linda and Sharon came to Singapore to seek further treatment in NUH. Both mother and daughter are now staying in a unit overlooking the reservoir surrounded by a vast area of greenery, while Sharon’s father, Richard Rain, the sole breadwinner of the family continues to work in Indonesia.

Linda is so grateful for the wonderful people who entered their lives. Sahabat Orang Sakit (SOS), an Indonesian community church in Singapore, has rallied around them throughout the whole journey. The assistant pastor, Ricky, has invited them to stay at his apartment in Singapore without any rental. With the support of their pastors and church members, the hospital bills were also well taken care of.

IMG_2570

Sharon is also thankful for Star PALS for visiting her at her rental apartment and taking care of her needs and wants.

Star PALS Sharon_2016-03-02_Photo by Lawrence Loh-5

“Nurse Nicole from Star PALS is nice. She knows that I wanted to visit the Singapore River Safari and Zoo, so she planned an outing to for me, I enjoyed it!  Kimberly, my Medical Social Worker is also nice to me,” shares Sharon in her own simple words of appreciation.

Star PALS Sharon_2016-03-02_Photo by Lawrence Loh-14

Since Sharon was two years old, she has been acting in Indonesia.  When she was three, she started to model for children’s clothes, and often paraded and “catwalk” in shopping centres.

“I was her personal chauffeur, driving her to and from school during weekdays, and sending her to the modeling assignments and classes with Kumon during weekends,” jokes Linda.

“Daddy sent me to school, not you Mum.”  Sharon gently interrupted.

The intimacy of this family is not lost on us. Linda and Sharon recounted the experiences and activities they used to enjoy together.  Sharon not only knows how to catwalk, pose for camera, she can also sing, play piano, dance and swim.  Talking about these activities brought a smile to her face.

IMG_3941

With such talents, Sharon is planning to embark on a new journey to do a personal music video. As a nine-year-old, it is amazing that Sharon has overcome so many milestones, which clearly reveals a determined young girl who knows how to live life fully.

“We can only rely on God’s miracle. We came by faith and never in my wildest imagination did I expect such grace,” shares Linda.

“I don’t really care. God will decide how long I live,” added Sharon adamantly about her prognosis.

Star PALS Sharon_2016-03-02_Photo by Lawrence Loh-32

Although young, Sharon displays an amazing maturity in coping with life and death.  Her faith is unwavering for matters that are beyond her control. In the meantime, she continues her life with passion, giving her best at what she enjoys doing and living life to the fullest.

Drop a note of encouragement to Sharon and her family at communications@hcahospicecare.org.sg. Visit http://www.starpals.sg/ to find out more about Star PALS, a paediatric palliative service under HCA Hospice Care.

[A Heart of Gold] Trading Miles for Smiles

Parents would do just about anything to see that sparkle in the eyes of their child or simply a face beaming with joy. When it comes to illuminating a smile on a child’s face, Caring CAB (Clowns at Birthdays) does likewise. Caring CAB is a group of professionals (some of whom are holding full-time positions) which has been actively volunteering with Star PALS since 2013. They travel the extra mile to bring the children extra smiles by bringing into play their clowning talents, singing and dancing skills and even performing magic for the children.

Picture3“A meaningful life is not about being rich, being popular, being highly-educated or being perfect. It is about being humble, being able to share ourselves and touch the lives of others. It’s only then that we can have a full, happy and contented life,” declares Shootie, who prefers to be addressed by his clowning name, a little quirk shared by his fellow funny men and women. The group of vibrant, fun-loving clowns has had many “first time” experiences with our patients at Star PALS.

Entering every house evokes a similar feeling of anticipation within each clown, but a different impression becomes indelibly imprinted in their hearts when they leave. There is a sense of joy in prevailing against hopelessness, a show of perseverance and gathering of strength despite all odds in most of the households that the clowns visit. They leave the houses, each with a deeply personal experience, speechless and amazed in their individual ways by the patients and their families alike.

“We show we care by delivering a moment of relief to the patients in whatever situation they are in, putting a smile on them; at the same time, the caregivers cheer up too,” shares Scooby.

Caring CAB always tries its very best to accommodate the different schedules of the families and individual physical abilities of the patients. The fabulously entertaining group of joyful jesters definitely go all the way and beyond just to bring joy and comfort. Most importantly, they create many beautiful memories that remain etched in the minds and hearts of our beneficiaries.IMG_0403On one such memorable occasion, Star PALS invited Caring CAB to join us for a birthday celebration in the afternoon. Sidney and Tellie were the dynamic duo activated and at the honking of a bright, red nose (or two), they dropped their daily work and hurried to meet the team at the void deck of the patient’s home. That was their very first home visit (unlike their usual hospital visits) and that one home visit thoroughly changed their perspectives and motivated them to continue spreading love and joy as clowns.

“The one-to-one interaction demands a lot more from us but the reward far outweighs the investment,” explains Tellie, the crooning comedian who loves singing.

In a hospital setting, there were proper facilities where they could change into their costumes and actual dressing tables where they could transform themselves cosmetically into full-fledged clowns, but home visits posed a whole new set of challenges as they had nowhere suitable to do any of those things.

Without much hesitation, they started slapping on their make up with whatever they had at the void deck benches. With space being a constraint, where can they change? Needless to say, clowns are almost always armed with a mindful of crazy ideas; they found a corner by the rubbish chute, relatively hidden from prying eyes (unfortunately not from our excessively enthusiastic photographers) and started frantically gearing up and hysterically pulling their costumes over their heads.Picture1Truly, these are not your run-of-the-funny-farm, ordinary clowns, but clowns with extraordinary talents and hearts of gold – always willing to spare time and go the extra mile just to witness a smile on the faces of our patients and families.

“I think about the turmoil that they are going through and what they have possibly been through earlier. Whenever I read certain stirring paragraphs of fiction, hear a particularly touching song, I’ll still remember the session vividly,” says Ronger, who volunteered once with Star PALS and left with a genuinely moving impression of a home birthday celebration.

Picture2

“Our beneficiaries acknowledge the total devotion from the Caring Clowns. The settings in which they practice their craft (within our patients’ humble homes) have not been the most conducive but they took it in good spirits, blessing so many along the way with their genuine and heartfelt kindness,” says Dr Chong, Medical Director of HCA Hospice Care.

We are eternally grateful to be blessed with these beautiful buffoons who are volunteering with us at Star PALS. The difference they make to our beneficiaries is something neither any amount of money can buy nor any form of medical treatment can accomplish. It is something so priceless and worthwhile just to see the innocence and pure joy radiating from the smiles of our beloved patients, delivered right to their doorsteps and straight to their hearts in a Caring CAB crammed full of crazy clowns. The joy is profound, and it spreads to all who are present.

IMG_0597Drop a note of encouragement for our beloved volunteers @ communications@hcahospicecare.org.sg. You may also wish to visit https://www.hca.org.sg/hospice/volunteers/info-on-volunteerism to volunteer with HCA Hospice Care. Stay tuned to read more volunteer stories in the [Heart of gold] series!

From Stork’s Nest to the Stars: A basket full of goodwill and well-wishes

Ever so often, we become overly concerned about the way we look. We wake up feeling frizzy, like we are having a bad hair day, or walk out of the salon complaining about the bad haircut that was foisted upon us. What does it mean to have a good or bad hair day? The truth is that it is something petty and trivial that we pointlessly obsess over. For many patients suffering from cancer, the state of their hair is the least of their many worries.

HCA Hospice Care had the privilege to speak to Jani Combrink, founder of Stork’s Nest, who shaved off her hair to raise funds for the patients under the care of Star PALS, a palliative care service under HCA Hospice Care.

Stork’s Nest started four years ago in 2012 with only 20 of Jani’s close friends. To date, they have established a strong parenting support group reaching out to more than 7000 like-minded people living in Singapore who have been raising funds for Star PALS through different initiatives.

IMG_1544

Last year, Stork’s Nest went the extra mile to organise three events which raised a total of $43,451:

Jani’s Sell-a-ton

The bustling bazaar has been an ongoing event since 2013, providing a unique opportunity for different individuals to set up special stalls selling both preloved and brand new items; all the proceeds from the successful sale were then generously donated to Star PALS.

IMG_1626

Jani’s Shave-a-thon

“I was so embarrassed that I wished I could have done it in the bathroom instead.”

Despite her apparent mortification, Jani’s leap of faith and courage has moved the hearts of many to donate and give their support to Star PALS.

“No one stepped forward to shave. I was thinking it was just hair but when every strand of my hair started to fall, it was tough,” says Jani, with a look in her eyes that was a bold blend of bravery and fear (for one cannot exist without the other). “But I just kept thinking of the children suffering. How silly of me to feel so emotional about my hair!”IMG_1157

From various walks of life, Jani and the members of her team have each met children who were suffering from cancer, and have always wanted to raise awareness for these children through a big and significant event. Since they missed their opportunity to participate in the Singapore “Hair for Hope” event, they decided to go a-head (pun alert!) with their own private “shave-a-thon”.

Jani’s Christmas Quiz-a-thon and Auction

A swarm of question marks was hovering all over the heads in a hall in Fullerton Hotel throughout the enigma of an event known as “Quiz Night”! Funds were raised through the sales of tickets for the night and through an auction - a lucky Manchester United fan brought home the much-coveted grand prize: a jersey signed by Will Keane himself!

Now…why did Stork’s Nest decide to channel their funds to Star PALS?

Stork’s Nest does not run on a single cent of money nor do they accept any donations.

“We run on human energy and experiences,” shares Jani. “We can hold more events, not with money, but with the human resources that we have.”

Every individual comes aboard with no hidden agenda or motive, but only to improve the community by empowering and supporting parents. Currently, Stork’s Nest has nine official groups which cater to beneficiaries with different needs, from single mums to parents with children suffering from cancer.

“People were giving us money. We did not want to accept it for our own organisation so we decided to donate the money to a good cause,” says Jani. “The work that Star PALS does is such a great fit to what we believe in.”

Anson Ng, HCA Hospice Care’s long-time volunteer, was the one who shared with Jani about Star PALS, introducing her to HCA and our services…and as they all say, “the rest is history”.

Indeed, it has been a privilege to be the beneficiary of these wonderful and selfless initiatives. Once again, we would like to thank Stork’s Nest for their continued support from “hair to eternity”, and donations which have definitely gone a long way towards blessing the children under our care.

To donate, please feel free to visit https://www.hca.org.sg/hospice/volunteers/donation.

Like our Facebook to find out more about our daily happenings!

A ‘beautiful departure’ of four-month old baby

Featuring the work of photographer Kerry Cheah, this article showcases Hermien’s life and strength even after the departure of her four-month old baby, Andrew Theophilus.

Welcomed with a warm handshake and smiles plastered on Mdm Hermien Iswantho and her three year old daughter, you won’t be able to imagine what they have gone through. They called it death but she says, “It’s a beautiful death.”

151118HCANurseSereneFinal48

Doctors told Hermien repeatedly that she could not conceive due to her medical condition but she was determined to be a mother. Artificial insemination was not an option as Hermien and her loving husband, Mr Ady Atmadja believed that God would bless them in His time.

The long wait of ten years finally paid off, Hermien managed to conceive her first child. They were surprised and overjoyed. Sadly the joy was short-lived, it resulted in a miscarriage three months later. She had no physical pain but emotionally, it is was overwhelming.

151118HCANurseSereneFinal34

The miscarriage did not waver her decision. The glimpse of hope that she used to have did not diminish. She tried for a second child and was miraculously blessed with an adorable baby girl, Ashley, who is cheery and tugs at the heartstrings of many.

151118HCANurseSereneFinal40

Her third child, whom the family thought was a baby girl came as a surprise. Hermien and her family were allured by the entry of baby boy, Andrew Theophilus. However, the journey ahead was not easy for the family. They lost four-month old baby Andrew to Patau Syndrome. A rare disease with a predicted life span of only 2 months from birth. Baby Andrew outlived the prognosis and had a fruitful four months, with a restful staycation and trip to Sentosa Island. Family trip to Sentosa“I cried when I heard about all his medical conditions. Why does a small tiny child have to go through such pain,” Hermien questions herself. “I used to ask God, can I exchange my health for his pain?”

Andrew faced several complications with his health, sometimes, he would stop breathing.

“I remembered calling Dr Chong and Nurse Serene for help and they will give me appropriate advice,” says Hermien. “When it happens at home, I’ll pinch his tiny fingers and it helps to revive his breathing.”

151118HCANurseSereneFinal49

Andrew was fit to be brought home to rest. As much as Hermien was happy, she could not assist in the suction or the tube feeding.

“I could not bear seeing my child suffer and having all the tubes in him,” says Hermien who was certain that the family will not resort to resuscitation should there be any complications.

“He was an alert and cute boy,” says Hermien as she recalls Andrew dying in her arms on her birthday. That fateful morning, Hermien noticed that Andrew did not cry and had unusual behaviours of coughing.

“He stared blankly at me and simply gave me three blinks when I asked if he wants to go home with Jesus. Then, I hurried to call my husband.”

They told Andrew, “If it’s your time, we’ll give you to Jesus,” followed by a simple prayer and neither any pain nor struggle, Andrew laid down his head for eternal rest straight after “Amen” on 28th September 2015. Baby Andrew

He was a tough fighter since birth. Despite his medical conditions, he grew like any other normal baby and his smiles brought joy and comfort to his family.

“I was doubtful and I wanted to check. I asked for the stethoscope again and when I heard no heartbeat, I knew and accepted that he was gone,” says Hermien. Those four months with Andrew were precious and Hermien would never trade anything else for it.

151118HCANurseSereneFinal50

Ashley, is aware of the absence of her baby brother. She used to accompany him while mummy prepares milk.Ashley and Baby Andrew

“Once in a while, she will look for Andrew in the baby cot. Sometimes, we will talk to her in front of Andrew’s picture,” says Hermien. “She loves him”.

151118HCANurseSereneFinal30

Hermien is thankful for the support from Star PALS, Dr Chong and Nurse Serene, for their love, care and concern even after the passing of baby Andrew.

“They assisted me medically and answered a lot of my questions.”

It was definitely not easy for a family who waited so long for a baby, had hopes of parenting the child, and was crushed not once but twice. Nevertheless, Hermien has a heart full of gratitude. Together with her family, they continue to inspire others with their story and strength. Their faith keeps them strong – believing all that happen is for the greater good.

You may wish to drop a word of encouragement for Hermien and her family at communications@hcahospicecare.org.sg. HCA Hospice Care provides bereavement support for our beneficiaries to help them cope with the loss of their loved ones. Visit https://www.hca.org.sg/hospice/services/psychosocial-and-bereavement-support to find out more.

Gone but still in MY heart and mind

Featuring the work of photographer Kerry Cheah, this article showcases Nurse Serene at work as she shares her pains and gains through lessons learnt from her patients at Star PALS, a paediatric palliative service for children with life threatening or life limiting conditions.

151118HCANurseSereneFinal1

“We cry, I cry a lot. It’s not a taboo to cry, it only shows that my heart is always with the patients,” says Serene as she shows a personal record of her patients’ death anniversaries on her phone.

Serene’s heart has always been for the disadvantaged. She started her career teaching children with special needs for nine years, nursing came into the picture when she decided on a career switch. She joined the palliative care service two and a half years ago and has never looked back since.

151118HCANurseSereneFinal19

Serene starts her day with administrative work and phone calls. Then, in contrast with her gentle disposition, she scoots off in her Vespa with her medical bag seated in the front to visit her patients.

“It is not a sad day every day, I do enjoy my visits. For me, the connection with families brings a great sense of satisfaction.”

Serene finds it a great privilege to be invited into the house of her patients. Thus, she does not misuse her designation as a nurse to dictate what the families do. Instead, journeying and supporting the families’ decisions are more important.151118HCANurseSereneFinal4

“They have all the rights to chase us out and reject our service,” says Serene who treats every first step into the house of a family a privilege. Her senses are all hyped up the moment she enters, she starts to identify the dynamics of the family, their problems and issues that she could help tackle. Her main concern is the patient and the concern also extends to the other family members – providing a holistic care.

“Patients and families sometimes turn us down due to the myths and disbeliefs of palliative care. There is only so much we can do for them to trust us,” says Serene as she recounts a few painful experiences with patients who passed on without the comfort that palliative care could provide. “Palliative care is one that I hope everyone can receive when diagnosed.”151118HCANurseSereneFinal24

Being quick to readjust to moods and environment is important in the work that Serene does. She may be visiting a dying patient in the morning and attending a birthday celebration in the afternoon.

“It’s so real. One moment I’m feeling the loss and the next moment, I celebrate an added year to a child’s life,” says Serene. Every relationship is an intimate, sacred and delicate experience. Her heart wrenches whenever she witnesses a child yearning to run and play outdoors yet trapped in a physically disabled body.

“It pains my heart even more when I leave the house of a suffering child and family, only to see everyone else in the surroundings living life as per normal,” says Serene who finds an even greater purpose and is certain about the work she does.151118HCANurseSereneFinal51

Serene does not stop when her patients pass on, she continues to foster a close relationship with their loved ones. Her time with each individual is a precious and uplifting moment.

151118HCANurseSereneFinal27

She cries, pray and laugh with the families, sharing beautiful memories of those who had left. It always touches her when families treat her as one of their own – On one occasion, a family surprised and celebrated her birthday with a homemade cake.151118HCANurseSereneFinal52

“I’m tired after a day’s work but I’m always happy to be able to touch someone’s life,” says Serene who finds strength from her faith and family. “What warms my heart? Wishes of patients and families fulfilled before and after death.”

You may wish to drop a word of encouragement for Nurse Serene at communications@hcahospicecare.org.sg. Stay tuned to the next story of Nurse Serene’s patient under Star PALS – a sharing by Mdm Hermien and her baby’s beautiful death. Star PALS is a paediatric palliative care service dedicated to improve the quality of life for children with life-threatening or life-limiting conditions, in the comfort of their homes.