My son was diagnosed stage 4 Burkitt lymphoma in May 2019. Initially, when the doctor recommended a NG tube to be inserted at his next general anesthesia, I was very resistant to the idea. She explained that chemotherapy would affect his taste, smell, appetite and could even cause mouth ulcers, which would further inhibit his oral intake. Furthermore, during treatment period, he would require higher amount of protein and calories to maintain strength, keep his body tissue healthy, and decrease side effects of chemotherapy.

I refused her suggestion because there were many negative connotation of a child on NG tube playing in my head –Would he be exposed to the stigma of a debilitated child in public places? How would my family and friends react to seeing a tube sticking out of his nostrils? And somehow, I felt that by giving in to NG tube feeding reflects my failure as a mother.

Gosh! Had I known better…

Not two weeks into his first chemotherapy cycle, roles switched and I became the one appealing doctors and nurses for an earliest opportunity to insert NG tube. As the doctor predicated, his appetite quickly waned. There was a period he was so weak that he slept for three days straight. Making him eat and drink became a near impossible task. Meal time came with so much stress, tantrum (mine more than his) and tension. To make matters worse was the around the clock oral medications (believe me, I had changed every medication I could to IV form). We had to constantly arouse him in his sleep and understandably, he was not a happy trooper. Very soon the situation deteriorated to having to resort to nurses pinning him down and pinching his nose in order to force feed medication down his throat. Imagine doing this every 8 hourly- day and night. Those were really dark days…

We agreed that the best time for his first tube insertion would be with his intrathecal chemotherapy as he would be put under light sedation. In order to prepare him for the procedure, a social worker from Children Cancer Foundation (CCF) introduced him to the NG tube and tried her best to explain its purpose in a language a three-year-old would understand. She even brought along a custom-made soft toy to do role play with him.

However, nothing could have prepared us for the real deal. In the procedure room, he put up such a fight that 4 nurses had to hold him down. Even so, their effort quickly turned to dust as he pulled out his first tube within an hour. And subsequently, the second one within a day. I was at wits end and eventually resorted to taping his hands on splints. The first 3 days, he cried, begged and pleaded for me to remove that thing from his nose. When he finally accepted that I will not give in, he fell into a depression (yes, a three year old can be depressed).

After nurses secured the NG tube to his cheek, other end was left literally hanging. It was very awkward. I did not know what to do with the remainder 30 cm tube with a weighted port. I tried looping around his neck but it slowly strangled him. Then, I tried to micropore tape the tube to his shirt but the constant retaping left a sticky residue on the tube. I also tried using a hair clip to hold the tube but it was hard and scratchy on his skin. Not long later, I noticed his head began to tilt outwards as if the dangling NG tube was weighing his cheek down. It was so bad that physiotherapists were activated to help neutralise the tilt.For nights I sat at his bedside and pondered on how to help him get use to the NG tube. Suddenly, a thought struck me to make a small pouch to pin on his shirt to store his NG tube. After googling for ideas, I made the very first pouch with needle, thread and offcut fabric, literally hand-sewn at his bed side. With his NG tube tucked away nicely in a pouch, it no longer was a thing constantly nudging at him or getting in his way. Soon he saw the benefits of the tube, got used to the new sensation and things started to return to normal. Some of the things which I did to help him accept the tube are –

1. Reminding him the positive side of using a tube “See! No more yucky medicine!”
2. Distracting him quickly whenever he reach out to touch/pull the tube.
3. Tape the tube securely so that it doesn’t move in and out of his nostrils when he cries. The in-out sensation makes him gag.
4. Get him involved with the feeding. I asked him to “help me” push the plunger when giving him medication so that he able to familiarise himself with the tube.

A few months into treatment, the NG tube became a part of him, a part of us. Once or twice, a curious child asked us about that yellow thing sticking out from his nose. And I explained its purpose as pleasingly and gratifyingly as introducing our live-saver 🙂

After seeing how the NG tube pouch helped my son. I now make pouches in my free time and distribute to others who may be facing similar situation.