Patient history
“Sister Luki, I am calling to say I have missed you and all the nurses at the hospital…” This was a call that came in April 2010 that reconnected Zaidin to help.
Zaidin is 14. He has been fighting cancer for over 2 years. In the middle of his battle, his mother died from breast cancer leaving him and his younger sister with his father as the main caregiver.
By the time of the phone call, it had been almost a year since his mother had passed away, and more than a year since he received any treatment or had any contact with Luki, the head nurse of the pediatric ward at the National Cancer Centre who had taken wonderful care of him.
It was through that fateful phone call that Luki found out that Zaidin’s mother had passed away, and it was also not long after that call that Zaidin was referred to Rachel House.
Background
Zaidin was diagnosed with Rhabdomyosarcoma in 2009 at the National Cancer Center. He was operated on and received several cycles of chemotherapy with his mother constantly by his side as his main caregiver.
Zaidin’s mother was not only Zaidin’s caregiver but also the main caregiver of the family. After the doctors said he was in stable condition, Zaidin and his mother chose to return home. Zaidin’s mother then became ill and eventually passed away. It became difficult for Zaidin to return to the hospital.
Zaidin has a younger sister aged 7 who is in school. Zaidin’s father is the sole breadwinner for a household that consists of Zaidin’s grandmother, his auntie and uncle and his sister. Zaidin’s father works as a labourer at a construction site in the morning, and as a motorcycle taxi driver in the afternoon.
Since the death of his mother, Zaidin’s father has taken over the role as the main caregiver for him.
At Rachel House
On Alisda’s very first visit to the house to assess Zaidin’s condition, she had to perform tasks that were totally out of the ordinary for a nurse. Having discovered that Zaidin had not bathed for almost 12 months and his bed linen had never been cleaned during that time, Alisda set the whole family to task. She gave a broom to the uncle and a mop to the auntie to start them both cleaning the room. Then she had the team move the mattress to shake out the dust. Once everyone was busy with their individual tasks, Alisda showed Zaidin’s father how to bathe and clean Zaidin.
After the spring cleaning was completed, came the physical assessment. Zaidin had little mobility – no movement in the legs, and restricted movement in the arms (he had trouble lifting his arms to shake hands with Alisda). Zaidin had been lying in bed for almost a year, since the surgery on his left eye.
Taken by the gravity of the situation and moved by Zaidin’s case, Alisda quickly realized that Zaidin needed to be motivated to re-enter life. To do this, Zaidin will need the support of the entire household.
So, Alisda came up with some ingenious ways to bring life back to the family:
For Zaidin, Alisda gave him a notebook in which he was tasked to enter his daily activities. This would include simple tasks such as bathing, brushing of teeth, meals, medicine taken as prescribed, maths homework (Alisda gave Zaidin maths exercise books when she found out that maths was his favourite subject in school).
For each member of the family, Alisda gave them one simple daily task each such as mopping of the floor for the auntie, sweeping of the floor for the grandma, drawing lines in Zaidin’s diary for the uncle.
For Zaidin’s father, Alisda sought activities to forge closeness between father and son, and to build the father’s confidence in providing the best care for his son. Zaidin’s father was tasked to give a daily exercise and massage to Zaidin’s limbs, in addition to caring and changing the dressing for Zaidin’s wound on his eye.
Goal-setting
Zaidin was also encouraged to commit to goals. The first of the goals set was for him to work towards being able to sit up to allow Alisda to take him on an excursion to a shopping mall after Idul Fitri (in August).
As it takes close to 2 hours for Alisda to reach Zaidin, she could only manage a visit once every fortnight. But communication with Zaidin was maintained every day to monitor his progress. On every subsequent visit, Alisda would go through with Zaidin his journal entries to ensure adherence to instructions.
The most beautiful thing to witness was the love and dedication of Zaidin’s father in his care for the boy. No matter how tired he was from his jobs, he will never forget to massage Zaidin’s legs. The attention and the precision with which he cares for the wound on Zaidin’s eye have allowed the area to heal beautifully.
But no matter how hard everyone tries, the hole left by Zaidin’s mother was difficult to mend. This was especially evident during the Idul Fitri celebration when Alisda presented Zaidin with a new outfit. Instead of reacting with joy, Zaidin was was teary-eyed. He said “I didn’t think I will receive any new outfits this year, since mom is no longer here to buy them for me”.
Goals attained
During the Idul Fitri holiday, unbeknownst to Alisda, Zaidin begged his father to walk him in the wheelchair to the nearest mall (4km away). On that day, he did not only make it to the mall but also made it to the water bomb park, all on his own without Alisda! The courage and determination of the boy is inspirational, and all it took was a little motivation and attention from the people around him!
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