Nichi’s Bystander

In a perfect world, kids freely dangle from monkey bars, play in sand boxes, go sliding, swinging and see-sawing until they get satisfyingly exhausted. But last Friday, I was once reminded how the world is far from perfect.

I do not really have to look far to know that not all kids are as normal as they should be. I have witnessed my bother’s battle against leukemia from 2001 to the present. Since the day he was diagnosed of the said disease, things were never easy for him.

If there’s one thing I hate about his ailment, it is the unmerciful manner in which it takes away most of his childhood. While other kids can freely go outside and play, he has to have the approval of a doctor—that his blood count is within the normal range so that it will be safe for him to mingle with other people. He is required to wear a mask to filter whatever virus he might possibly inhale. I have tried wearing a mask myself and it surely is uncomfortable.

Nichi, my brother, he continued attending a regular school not until last year when he had just started his first year in high school. He was forced to take a sabbatical due to the more intensified chemo protocol designed by his doctor to rid him of his disease once and for all. I know my brother so well that I understand how much courage it took for him to say goodbye to his teachers and classmates no matter if his farewell is just a temporary thing.

By the way Nichi shares his stories, it is apparent that the best times he’s had are those he had spent in school. He managed to enjoy his classes and the company of his classmates even if he had treatments, chemotherapy sessions and, at one time, a radiotherapy session on the side. He did well in class, too. In fact he graduated from elementary with the fifth honorable mention distinction to boast.

A major burden that goes along his disease is the pain it inflicts him. It is bad enough that he experiences headaches, muscle pains, and joint pains from time to time; he even has to face needles on a regular basis. From the time he was seven until now that he is turning 13, he has learned to handle needles, something I have a morbid fear of. These needles come in various sizes and enter his skin on different depths.

There’s that stapler-like device that pricks his fingertips to let out enough specimen used to analyze his current blood count. Then there’s the so-called butterfly and the heplock, both used for IV lines for some of his chemo drugs. If Nichi’s veins decide to show up, inserting the butterfly or the heplock on his hand will be successful at one insertion. If the veins do not cooperate, Nichi suffers several insertions until the needles assume the correct position. If the veins on his hands freak out and hide, there’s always his feet to puncture.

On a regular basis, Nichi gets an intrathecal (IT). I think it is more famously known as a lumbar puncture (LP) a process where a needle is inserted in his spine to extract a sample of his cerebrospinal fluid (CSF) and to inject another chemo drug that ensures that his brain is free from leukemic cells. For the first time, I witnessed this procedure last Friday. I’ve seen Nichi undergo IT in pictures and videos but never in person. To narrate what I saw read this: a relatively fat needle, about six inches long, is inserted at Nichi’s back while he maintains a tight fetal position. (He must tuck until head touches his knees.) About four inches penetrates the body. To give you an idea how “relatively fat” the needle is, continue reading: once the needle is in place, the doctor turns its screw-like end then pulls out a long needle within the first needle which is inserted in Nichi’s back. Therefore the first needle is “relatively fat” enough to contain another needle inside. Ouch!

Sometimes Nichi undergoes a bone marrow aspiration (BMA) where a little amount of marrow is sucked out of his bone. The needle in this procedure is fat, too and the tip of the syringe where the needle is connected is made out of metal probably to make it stronger than plastic syringes. The needle has to be strong because it would not only penetrate the skin, it will also go through the bone, the pelvic bone to be exact. Once it is properly inserted, the marrow is extracted, enough amount to stain four to five slides.

Everyday Nichi takes a number of prescription drugs. Everyday he is reminded of how different from normal his life is. Sometimes, he notices and stays sad and depressed for a while. Other times, he seems fine with the fact that unlike his playmates, his activities need more supervision and come with definite limits.

Somehow, Nichi has learned to live with his ailment. He accedes to whatever procedure that has to be done to him, regardless of how painful it might be because he is optimistic that by fighting a good fight, he will soon win.

Through it all, my family and I, backed by relatives, friends and strangers, are behind him, cheering for him and praying that his efforts wouldn’t go unrewarded.