Support Nikolas' Battle Against Neuroblastoma Relapse

March 15th turned our world upside down again; we received the devastating news that our son Nikolas, our sunshine, our whole world, relapsed. His cancer spread to bones this time. We knew the odds, the brutal statistics for high-risk neuroblastoma – 50% survival rate, 60% relapse chance, and a significant drop after that (once in relapse, the survival rate drops to less than 5%). But knowing and feeling are two different beasts. We weren't prepared for the fear that clawed its way into our hearts, the helplessness that threatened to drown us. Nikolas, our little fighter, deserves more than a statistic. He deserves a chance. He's our son, a fighter with a smile that can light up a room. We won't let the numbers define him or our fight. We'll keep searching for answers, for hope, for best treatment because that's what Nikolas deserves. We'll face this storm together, one step, one treatment at a time. We know the journey is hard, but Nikolas is strong, and so are we.

Some of you have walked this path with us from the beginning, your love and support have meant the world, and for those who are new, thank you for joining us. We're sharing an update on Nikolas' fight with neuroblastoma.

In June 2019, our world shattered. Our firstborn son, Nikolas, was diagnosed with High-Risk Neuroblastoma, stage IV with MYCN gene amplification at just 3.5 years old. Neuroblastoma is a rear childhood cancer, and this specific form is incredibly aggressive.

Nikolas fought unbelievable hard. He began his battle against cancer at Hackensack Hospital in New Jersey before transferring to the world-renowned Memorial Sloan Kettering Cancer Center in New York City. We were trying to find the best possible care for our son. He underwent a 12-hrs surgery to remove a tumor wrapped around his right kidney. The pediatric surgeon called it one of the most difficult procedures they've ever performed. The surgery was successful, but it did require the removal of the right kidney and some nearby adrenal knots. He endured 6 grueling cycles of chemo, 12 targeted rounds of radiation, and 6 innovative rounds of immunotherapy. Following this, he underwent Accutane treatment and received a special preventative vaccine developed at Memorial Sloan Kettering Cancer Center. On top of that, the countless scans, bone marrow aspirations, and the emotional rollercoaster have been incredibly challenging. There were complications along the way, moments of fear and frustration, but Nikolas never gave up, his spirit never broken. Nikolas's fight was a marathon of strength. Over a year of relentless treatment…and then, the glorious news – remission! So desirable “Cancer-free” was a blast of pure joy and relief washed over everyone who had walked beside him on this grueling journey. Nikolas's spirit is an inspiration.

Nikolas started to live his best life. We were a happy family again. School, soccer, chess, vacations, and the constant joy of being a big brother to Matthew – their days were filled with laughter and unforgettable moments. Every day was a gift, a chance to create memories that would forever be etched in our hearts. As a family we were stronger and more grateful for the simple joys of life. Regular checkups with the oncologist were a reminder of the battle fought, but scans remained clear, bone marrow biopsies uneventful. But life, as it often does, throws unexpected curveballs. While everything seemed perfect, an invisible shadow lurked on the horizon.

In January of this year, Nikolas started to complain of leg pain. We took him to a pediatrician where he was examined. The doctor initially thought it was a muscular pain because he'd just started soccer practice. Since the pain didn't go away, we went back to the doctor again. This time, she requested a blood test, which came back with normal results. However, Nikolas started limping, and the doctor sent him for x-ray. X-ray revealed a lesion in his right femur. We were suggested to contact our oncologist ASAP for further investigation. After MRI of his right leg, our worst fears were confirmed – most likely metastasis, the cancer's return. We still had hope that it is not true, but a full-body MIBG scan painted a clearer picture – the cancer had spread to some bones, thankfully sparing his organs. The disbelief was crushing. The question "Why?" echoed in our hearts. The joy of remission had been brutally ripped away, replaced by the harsh reality of a new fight.

Accepting this new reality was a brutal process. But the most heart-wrenching task lay ahead – a conversation with Nikolas. He wasn't the same wide-eyed 3 years old child from before. Now he is 8 years old, very intelligent and curious boy. We decided on honesty, a raw truth wrapped in love. As a mom, I knew that it is my mission to have this conversation. With a heavy heart, I sat him down. Trying to stay calm and positive amidst the emotional storm raging within was a monumental task. This wasn't a conversation any parent wants to have, telling their child about cancer, about a fight that loomed large. I knew the uncomfortable questions would come but there is no way you can be ready to hear something like "Will I die?", "What did I do wrong?", “Why am I sick?”. These questions steal the breath from my lungs. Nikolas, our brave boy, absorbed the news with wide, questioning eyes. "Why me?" he cried, a question with no easy answer. In that moment, I cried with him, my soul ripped into tiny pieces. I held him tight in my arms and I promised that we will do everything that is possible and impossible to win this battle. We did it once, we do it twice. This time would be different, the path ahead uncertain. But one thing remained constant – our love for Nikolas and our unwavering belief in his strength. Nikolas, our warrior, wouldn't face this alone.

Relapsed neuroblastoma presents a significant challenge. There's no single best course of action, and doctors need to carefully craft a treatment plan specific to each child's unique situation. The past two months have been a whirlwind. Nikolas underwent surgery for a chest port, a necessary step in his treatment. Two high-dose chemos have been brutal - a physical and emotional torture. Nikolas' little body struggled to cope with the intensity of the treatment. Out of the past 45 days, only 10 were spent at home, the rest, 35 days, spent between two different facilities. Memorial Sloan Kettering serves as our main hospital, a constant source of expertise and care and the place where we receive treatment, while Hackensack Hospital became a temporary place during crucial recovery periods, particularly when his white cell count dips. It's a harsh reality.

The fight has been far from easy. Nikolas developed allergic reactions to some medications, the most severe being to TPN (total parenteral nutrition) – a crucial source of nutrients for him since he lost so much weight recently. Prescribed TPN triggered a severe anaphylactic shock, leaving him struggling to breathe with swollen lips and eyes. Thankfully, an EpiPen shot stopped the reaction. But this experience was terrifying. Apparently, this allergy is extremely rare, leaving doctors and nurses equally surprised. Now, his weight management options are limited – either increased food intake, or a feeding tube, a last resort we hope to avoid. The past two months have been a relentless rollercoaster. But through it all, Nikolas' spirit remains unbroken. Amidst the fear and uncertainty, Nikolas' courage shines brightly. A whole family stands beside him facing each challenge head-on.

The path this time is undeniably tougher, as doctors warned from the start. But amidst the challenges, hope remains a flickering flame. We believe in the power of prayer. Please raise your voices in support of Nikolas, for every whispered prayer and heartfelt wish adds strength to his journey. We lift our voices in prayer, louder this time, pleading for a miracle. Last time, a miracle touched Nikolas' life. This time, with your prayers combined with our unwavering love, we believe again. Nikolas' wish is simple – to be healthy again and witness the magic of Messi's game live in Miami. We fight for our son, for his health, for his dreams. With your prayers as our armor, we believe in the impossible.

As many of you know, the best treatments often require significant resources. While we're incredibly grateful for our insurance, it doesn't cover everything. The unpredictable nature of this journey makes it difficult to foresee future needs or the overall duration. In this incredibly challenging time, we're reaching out for your support. Any donation will help us cover unforeseen medical expenses and ensure Nikolas receives the best possible care. We deeply appreciate your kindness, support, and prayers as we navigate this difficult journey. Together, we can help Nikolas win his fight. Sending you all our positive thoughts and wishes for good health.

Be Healthy!

Serenkov Family: Eugene, Marina, Nikolas and Matthew