Meet Akanimo “Nimo”, Angel (Forever 12) Desmoplastic Small Round Cell Tumor (DSRCT)

 

“NIMO - Just before sunrise on this fateful Wednesday, the earth welcomes a new entrant whose warmth and cries greet his joyous parents. His name is Akanimo (I’d call him Nimo). He is an epitome of gentleness and tenderness from day one. He grows so fast and tall, smart and all. 

 

Nimo is as magnificent a soloist as he is a team player. His innate ability to lead is easy to see as all playmates flock around him. An embodiment of skills he truly is - whether on the soccer field, in the tennis court or on the piano - a virtuoso in all ramifications. He’s good at all the board games, a critical and deep thinker who gives his all to win all encounters. That dazzling all-round confidence is a beauty to behold anytime. His academic records are perfect, excelling almost effortlessly at every grade level. He’s organized, tactful and neat. He rarely requires reminders to complete his homework. Of course he wants to maximize his playtime and would not want to be “interrupted” when in that “zone”. Lol. 

 

Nimo is such a great lover. His only sister is the luckiest recipient of his doting nature. He’s her biggest fan, her best friend, her Voltron. They compliment and complement each other. The next lucky parties are his cousins. Summer time at our house is always a handful for the poor adults but absolutely fantastic and memorable for the kids. The fights and the make-ups, the laughter and the tears, the vigor at daytime and the fatigue at nighttime. With his cousins, his leadership and organizational skills are evident. He never runs out of ideas to keep the battalion active and occupied. 

 

The templates seem laid for a lifetime of adventures and achievements; then life happens. After ten healthy, blissful years comes a report of abdominal pain and within a few days (not weeks, not months... days!), it’s cancer! Oh Nimo! His world, his sister’s world, our world develop a whole new meaning nearly overnight. What’s worse, it turns out to be a very rare and aggressive tumor almost unheard off even among health personnel. He’s only ten for heaven’s sake! It’s not just raining, it’s pouring. The fit, athletic build of our handsome boy gradually gives way to a grossly distended abdomen and markedly swollen lower extremities. He is struggling to breathe as his lungs can’t find enough room to let in air. He’s in excruciating pain, his screams echoing several miles from his bedside. No answers, no respite. Surely not a quagmire any parent will want to caught in. It’s Desmoplastic Small Round Cell Tumor (DSRCT).

 

Then some succor comes from supportive friends and family, brilliant doctors, nurses, physical therapists and other health workers. Nimo battles through chemotherapy, several surgeries and a bunch of complications of both tumor burden and treatment. Thankfully, the monstrous tumor is gone! He leaves the hospital NED - No evidence of disease! The thrill as we watch him ring that bell at discharge after a very long inpatient stay is second to none. A few weeks later, he holds up a banner of what we believe will be “The Last Day Of Chemo!”.  About a month later, he rings another bell- the last day of Radiotherapy! Some solace. Yes, peace at last? Nah, all too short-lived. 

 

Exactly two months after radiotherapy, the tumor is back! Devastating, demoralizing, heart wrenching. This is exactly one year from the onset of symptoms. We brace for further battle. The monster grows back more viciously. Bowel obstruction recurs (a major issue from the first occurrence) but this time surgery is almost off the table. The travail is horrific, the pain enormous. Options get thinner. Chemotherapy is recommenced. First signs appear “promising”. The tumor needs to shrink substantially before another surgery can be attempted to debulk the tumor. We eagerly hang on to that thread of hope. Unfortunately, Nimo is worrisomely emaciated. Another trial of chemotherapy fails and the tumor aggression reaches an exponential state - literally growing out through his skin! The liver is infiltrated and the function is significantly impaired. Chemotherapy is held off as focus shifts to at least preserving what’s left of his organ functions. We keep holding on to our hope and faith, advocating for him as we meet often with his team of healthcare providers. 

 

Over these years his legs are weakened by nerve damage, initially able to walk with leg braces but later would become wheelchair dependent. In spite of these, he still loves to dance. At Prom Night, he wins over the crowd with his special moves and gets crowned the Prom Prince! However, his dream of playing soccer professionally vanishes. A hitherto passionate fan of the English Premier League and other major European clubs and leagues, his interest in the games wanes. More so, he loses confidence in his abilities on the piano. The pains hinder his practice sessions and performances. The indescribable trauma from all he’s endured physically and mentally cause him to suffer very frequent panic attacks. Furthermore, the illness makes him miss out on several months of school too but his awesome teachers patiently fill in the gaps whenever he’s able to sit through a class. Interestingly, through all this he remains an avid reader, always eager to learn. He takes the 6th Grade State Math Exam and his teacher cannot hold his excitement as he announces Nimo is in the 99th percentile! So impressive! He continues to selflessly look out for others, ever willing to help. His sensitive soul is so endearing, filled with love and compassion. Joy radiates in him through it all. Nimo is indeed a super hero. 

 

October is here again! Our apprehension skyrockets for obvious reasons - the onset of disease two years earlier and the first relapse exactly a year ago. But it turns out much better than anticipated. Nimo is looking his best for the first time since he took ill! Hospital visits are shorter, no inpatient stay and he’s in fantastic spirits. Whether he’s playing his favorite games, or watching anime or reading a book, tranquility surrounds him and his warm smile perfects the ambience. Sadly again, it’s very short-lived. The abdominal pain returns November 1 and he’s re-admitted the next day for four weeks. He is released to watch the Thanksgiving parade (his last public event) but goes right back to the hospital the next morning. The camera rolls for final four-week stretch. No active tumor treatment as he’s too ill to tolerate the adverse effects of these medications. 

 

This Thursday comes and it will be the last time we hear his voice. Some irregular heart rhythms cause a cardiac arrest and he never regains consciousness. These last days are so tormenting as we helplessly watch his organs fail one after another. Just before sunrise on this special Wednesday, he suffers another cardiac arrest and the curtain is drawn. It’s Christmas Day. Nimo gains his angel wings. 

 

Nimo is just one of several thousands of children who’ve been terribly unfortunate to not only suffer from the burden of cancer diagnosis as well as complications of treatment but also to lose their lives to it. While there is remarkable improvement in pediatric cancer survival in recent years, the prevailing rates show that 1 in 5 (or 20 in 100) kids will die from cancer. Their dreams are dimmed way too early. Parents, siblings and caregivers are shattered as they have to live with this traumatic experience for the rest of their lives. The ripple effects of these losses are enormous. Pediatric Cancer Research is grossly underfunded. More awareness is key to improving survival and minimizing financial and manpower losses from childhood cancer incidences and deaths. 

 

Fly high, Angel Nimo! You are forever loved and forever in our hearts! - Dad.”