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Emotional roller-coaster for cancer patient’s mum

Most parents talk about their children’s grades or schools but Esther Kueh talks about her child’s chemotherapy and scans.

Her youngest daughter, Sara, was diagnosed with a rare form of cancer in February 2009 when the child was just one.

Today, Sara is undergoing the final stages of her year-long treatment against rhabdomyosarcoma, or cancer of the muscle. She experienced a relapse following the completion of her first treatment early last year.

Seated outside ward 88 at the National University Hospital, where the Children’s Cancer Foundation (CCF) wards its young patients, Kueh, 38, shares with Yahoo! Singapore her experiences as her daughter’s primary caregiver.

One of the main changes has been in the way she mothers her other children -- two girls and a boy.

The stay-home mum used to send the three children to school and go through their homework with them. She was also heavily involved as chairperson of the school's parent-volunteer group.

But once Sara was diagnosed with cancer, these activities and duties were quickly replaced with frequent hospitals trips and overnight stays.

There is a sense of sadness as Kueh talks about how she feels her other children, aged 11, 12 and 13, have “already sacrificed a lot” because they “lose their mother”.

They have to eat instant noodles for lunch or eat out and they do their homework by themselves, says Kueh. “I am a very hands-on mum. Suddenly, I have (had) to let go; it’s not easy.”

CCF’s senior social worker Eileen Chua says caregivers undergo tremendous stress.

In addition to the financial strain, it is trying when they see their child suffering and other children losing the fight to cancer. They also feel guilty when they neglect their other children.

Being in the ward 24 hours a day and isolated from their community, “life stops” for these caregivers, says Chua.

The emotional ups and downs

While Kueh finds caring for a baby with cancer is not too physically demanding, the emotional turmoil takes its toll.

“When she’s happy I am fine. When you see her getting a little weaker when she’s in hospital for fever, you worry,” she says, explaining the constant see-sawing of emotions.

When the doctor first told Kueh and her husband, who works as a cabin crew for Singapore Airlines, the diagnosis and that their daughter had a 50 per cent chance of survival, they “grieved” for two nights.

“The first thought I had was, ‘What did I do wrong?’" confides Kueh.

During the first week of Sara's diagnosis, the couple was already planning her funeral -- the flowers they would have, the music they would play, the dress she would wear.

Sara survived but as Kueh watched her youngest undertake a second, even more intensive bout of chemotherapy and radiation, the mother would sometimes think she would not seek treatment if her daughter relapses a third time.

Doctors, however, have reminded her Sara is a fighter and that her child, the “ward 88 princess” as nurses fondly call her, is "happy".

On her good days, Sara sings and dances in the ward. She is a bundle of energy and spirit and has drawn hospital staff and patients to her, describes Kueh.

“She’s feisty,” the parent stresses, noting that even if Sara cries over a procedure, her little girl will still go for it.


Staying positive

Despite the dark moments, Kueh believes strongly in staying positive and encourages other caregivers to do so as well.

Kueh, a Christian, takes comfort in her faith and also considers herself fortunate to have the strong support of family and friends.

Her mother takes care of her three other children. Other parents bring her children out, ferry them to dance performances and so on, while teachers keep an eye out for her children in school.

Thankfully, her children are very well behaved, she says with a smile.

Some friends have given the couple money to tide them over.

While the family has government subsidies and insurance to help foot the bills, it is “tough as a single income family”, acknowledges Kueh.

Her husband earns less each time he takes leave to look after their children, she points out.

But she also knows that other CCF patients may have a harder time struggling with their children’s condition.

“Many of CCF’s patients are from lower income families, (and have) no MediSave, MediShield. … They need help with hospital bills and living expenses,” she notes.

Aside from raising funds to support these families, other ways CCF helps caregivers include arranging a buddy system whereby a caregiver whose child has recovered supports another caregiver going through treatment with his or her child.

They also have “play personnel” to play with the child for some time each day so the caregiver gets a little rest.

To support the Yahoo! Purple Hope initiative, go here.

A message from CCF:

Dear Yahoo! readers,

Thank you for your concern, encouragement and support for CCF’s children and their families. We truly appreciate your generous giving to CCF through Yahoo! Purple Hope. 

We are grateful to our beneficiaries for consenting to share their stories.The intention is to help raise awareness of childhood cancer and not to garner donations for the individual families. Annually, CCF helps more than 500 children and their families, many of whom are in the same plight as those featured here.

The donations raised through Yahoo! Purple Hope will allow CCF to continue providing critical services to help these children and their families cope with their needs at various stages of their illness.

For any further enquiries, please email to admin@ccf.org.sg or contact Tan Lay Eng/ Koh Yang Cheng at 6593 6478/70.

May our joint efforts assist the children in winning the battle against childhood cancer.

Children’s Cancer Foundation


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