Help bring Palliative Care to Indonesia's children

I have spent a few days at Rachel House and have accompanied the medical team on several visits to their patients, so I was well aware of how young their patients can be. This day, however, was different. It was the first time I have ever joined a Rachel House nurse on a visit to a toddler.

Thomas* is a little boy who has not even turned two, and yet has been living his life in a way that many others do not. He was born with an illness that affects his immunity system, making his health more fragile and delicate.

While explaining his medical background, the Rachel House nurse told me that Thomas used to have oral candidiasis – a fungal infection – in his mouth when he was first admitted to Rachel House. He also had pruritic papular eruption (“PPE”) - a skin disorder characterised by itchy papules – all over his body, and lymphadenopathy – swelling of lymph nodes, complicated with severe lung tuberculosis.

A shy Thomas, seated on his grandmother's lap, welcomed us as we entered the patient's home. Perhaps his nervousness was merely because he was seeing an unfamiliar face, since his bubbly nature quickly became apparent. Thomas lives with his grandmother, aunt and uncle, as well as a sister whom he adores and is closest with.

To begin the physical examination, the nurse asked Thomas to step on the weighing scale, but he resisted. With some encouragement and the help of his sister, he eventually stepped on it by himself. “Wow, you have definitely gained weight, Thomas,” said the nurse cheerfully. He had finally reached a healthy weight for his age, which was wonderful news as it meant he had taken his next step towards a healthier life. “Thomas now drinks a lot more milk, sometimes even two small bottles,” said his jovial grandmother, “He also loves to eat biscuits, he eats at least two,” she added.

Thomas, similar to most children his age, rarely sits still now that he can walk and run around. It was tough to carry out a physical examination on such an active child. Thomas kept removing the oximeter from his thumb as we tried to measure his blood oxygen saturation. After many attempts, we were finally able to check all of his vital signs. We were thrilled to find that he is in a relatively stable condition.

“His coughing has stopped,” said his grandmother. He was also finally clear of the oral candidiasis and the skin condition, both have healed completely. Compared to the images the nurse painted of his previous state, Thomas' health has significantly improved.

It was time for Thomas to take his medication. As he is still very young, Thomas’ grandmother is responsible for giving him his daily prescription. What he does during this caught my attention. We giggled as we saw how calm he was as he paid close attention to the television. “Unlike the majority of young kids who like to watch cartoons, Thomas prefers to watch commercials,” said his grandmother.

Before we finished our visit, we took note of all the medications he takes and the amount that remained. We also gave them a pack of diapers, one of the basic necessities donated by Rachel House. “Look, your size has moved up from M to L!” exclaimed the nurse. “You have grown a lot, Thomas,” continued his grandmother.

As Thomas’ primary caregiver, his grandmother’s everlasting and unconditional love for Thomas is palpable. She has been having restless nights making sure her grandson takes his medication at the correct hour each day. She never forgets to update the nurses regarding his condition. She knows everything Thomas enjoys and he is the centre of everything she does. “Well, this is all for Thomas”. Maybe it’s the fear of losing him – Thomas’ mother passed away from the same condition as a result of a delayed diagnosis and treatment. Nonetheless, her dedication and support were truly inspiring. Because of his grandmother, Thomas is one step closer to a more fruitful life.

*name changed for privacy