By Sri Wahyuni | Palliative Care Nurse
Dani is 10 years old. It has been 2 years since he was first diagnosed with a rare kidney cancer.
When I first met Dani, he was quiet and non-communicative. He spent most of his days in bed and would not speak to me whenever I visited him at home. He was also in a lot of pain; he had been experiencing unbearable pain on his stomach, due to the tumor that continued to grow despite chemotherapy. I noticed from the medical records provided to us when Dani was first referred to Rachel House that he had received pain medications, so I was particularly curious as to why the pain had persisted. Upon assessment on our initial visit, we discovered that he had unfortunately not been given the right dosage of pain medications at home. We encounter this often when caregivers are not adequately prepared to administer medications prescribed. So, for the next couple of weeks, I specifically dedicated my time to support and educate Dani's mother, on the proper administering of the medications. Thankfully, Dani's pain eased quickly and his spirit lifted.
However, all was not well yet. Soon after his pain eased, his pain medications ran low. This meant that he had to go back to the hospital to see the oncologist for a review of his condition, as well as to get the new prescriptions. Unfortunately, it had been a while since his father, who worked as a manual labourer, was able to find work. Paying for the trip to the hospital was unthinkable for his family who, by that point, had to borrow money from their neighbours just to put food on the table.
In our mind, we knew that without the medication, Dani would once again spend his days in agonising pain.
Our team rallied the support of the amazing and faithful supporters who have been helping us bring palliative care to children like Dani. Their generosity allowed Dani to get to his medical appointment, thereby ensuring that Dani can remain pain-free and comfortable at home. His mother was overjoyed to see her son slowly returning to his old cheerful self.
One day when Dani was feeling better, he confided in me a wish he had kept hidden for a long time. "I want to go to a waterpark and go down the slide with my mom," he whispered. There was a small smile on his lips and a hopeful glint in his eyes. He had never been to a waterpark before.
To the waterpark we went last Saturday, and I saw the biggest smile on Dani's face. For a moment, I was lost in a thought of how different the situation would have been had he not been referred to Rachel House for home care, or had he not been able to go to the hospital for his pain medications. But the laughter of his mother and him from the pool drew me back to the present moment, and I was grateful to all our friends and supporters who had made this day possible for not only Dani, but so many other children like him who could smile once again.
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