I first met Aldi* in early March 2020 with Dadan, the Rachel House nurse assigned to take care of him. Before the visit, I was prepared by Dadan about Aldi’s diagnosis; that he has nasopharyngeal cancer (or nose cancer) since 2017. Cancer has now spread (metastasized) to the tissues that cover the brain and his spinal cord (the leptomeninges). I was told that Aldi is referred to Rachel House to help manage the complicated symptoms at home.
I must admit I was totally not prepared for what I would encounter when we entered the house – Aldi’s uncle’s rented house. Aldi and his mother have been there since they arrived in Jakarta in search of treatment for Aldi’s condition. Aldi’s father and his brother remained in the Lebak Regency in Banten – about 140 km from Jakarta.
Aldi is 17 years old. Three years younger than my son. I can see how weak he is, lying motionless in bed. As Dadan speaks to his mother, I could see Aldi’s eyes open from time to time. His breathing is labored, aided by oxygen supply. His mother told us that Aldi is not able to open his mouth without experiencing pain and that the metastases of cancer to his spinal cord has caused paralysis of his lower body and legs.
We enquired about Aldi’s hopes and dreams. According to his mother, Aldi has been tossing between the desire to go home to see his father and brother, and the determination to fight on to get better. I remember leaving the house that day feeling the heaviness of impending sadness.
In the following weeks, I watched as Dadan develops a beautiful relationship with Aldi, a bond forged with a young man who is missing his father terribly. Slowly, Aldi began to voice his deep longing to be home. Initially, it was just a passing thought; but as time passed, these words carried a sound of urgency.
Dadan and I discussed this back at the Rachel House office. With the Covid-19 pandemic in the background and the increasing number of restrictions being imposed on people's movement, we realized that time may not be on our side. And the clock has been ticking softly but surely for Aldi. We made calls to countless ambulance and transportation companies, friends, and families with cars – checking if anyone would be willing to drive Aldi home. As more and more rejections came in, we realized the enormity of the challenge. The race against time was present in all our minds.
I could not shake off Aldi’s simple yet seemingly insurmountable wish from my mind; a rock sat heavily in my heart. When I got home I told my husband about Aldi, and his wish to go home to be with his father and brother. I was surprised by his matter-of-fact answer, “I can drive him – if someone can pay for the fuel.”
Without even stopping for a breath, I picked up the phone and called Dadan to let him know of the possible solution. Within hours, we found a donor for the fuel, informed Aldi and his mother, and with Dadan in the car, we made our way to Aldi. When we arrived, I was struck by the smile on Aldi’s face. First smile. A precious gift.
Dadan had prepared a bag with all the medications Aldi may need for the long journey and at home. I had prepared food and drinks for their car journey. As the sun was just rising in the east, Dadan and I bid Aldi and his mother farewell. Bittersweet feelings. I knew in my heart that we will not meet again.
Aldi made it home safely. He had 2 wonderful days of reunion with his father and his brother. He passed away on the morning of the third day.
*Name is changed for privacy.