(by Lynna Chandra – Founder of Rachel House)
Today I heard a sad story.
I thought after almost 16 years at Rachel House, I would have heard it all. That nothing would threaten to break my heart and turn me into a mush now. But I was wrong.
A 6-year old boy’s story captured my heart today and broke it into a million pieces.
His name is Januar. He has lived with his cancer diagnosis since he was 3 years old. They had initially diagnosed him with Leukemia (ALL) and started him on a series of chemotherapy treatment for 18 months. Further pathology tests eventually pointed to neuroblastoma. And once again, Januar was submitted to a new treatment protocol – each one he accepted with courage and little complaints.
I can recall vividly when Januar was first admitted to Rachel House’s service a little over 8 months ago, for palliative care assistance at home. He had woken up that morning with difficulties to walk. His left foot was too painful for him to put his weight on. His mother sent a video of this strange development to our nurse – showing Januar limping and hopping towards his mother, and giggling with big bright smile on his face. It was as if the discovery of this disturbing pain on his left foot was just a game!
Januar quickly won our hearts over, with his incredible spirit of bravery and wonderful jolly.
Sadly, things have taken a turn for the worse these last few weeks. Tumour mass has crept up in different places; some growing much faster than others stretching his young skin, as we fear for the worst. Signs of hematoma can be seen on his arms and legs.
Januar is on high dose of morphine to keep his pain at bay. He had been really good in taking them, until a few days ago. Suddenly, he just stopped taking all his medications, and categorically refused to go back to the hospital.
And yet we know that without morphine, his pain can be intense. As we had seen a few weeks ago, when he woke up in the middle of the night screaming in pain at a lower dose of morphine.
So, what is the explanation?
Could it be that he has lost the sensation of pain with the brain metastasis? But he clearly winced when our nurse was cleaning his wounds – so, obviously he could still sense pain.
As our nurses probed and asked questions – we learned that his father had had to use Januar’s savings to pay for the rental of their home. And that he was particularly upset by the incident.
Is Januar worried about his parents’ financial situation? Could this be why he has stopped taking his medications?
Today, Rachel House’s nurse Dadan – Januar’s nurse since February – paid him a visit. Dadan brought food supplies along with a sum of money to pay for the family’s rent, food and transportation (to and from hospital). Dadan explained to Januar that he does not have to worry about the family’s economic situation, and that he needs to first take care of his health. Januar buried his head in the little PS game Dadan bought him, as Dadan waited patiently for him to respond.
Then, slowly he looked up, and said, “Does this mean mama can take me to play? And we can go to visit Tangcity Mall?”
“I will take the medications now, mama. But I don’t want to go back to the hospital. I just want to stay home with mama. And play…” he continued in his little voice, looking up at his mom for approval.
His loving mother flashed a huge smile of relief and rushed to get his medications.
A few moments later, as Dadan was getting ready to leave the house, Jason tugged at his mom and said, “Come on mama, let’s go. Help me get dressed, mama. We go to Tangcity Mall.”
Januar is our brave little warrior. And much more than that, he is a boy with a huge caring heart. Selfless and kind.
Today I heard the crying heart of a dying boy. And my heart breaks in a million pieces.
*name changed for privacy