September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
Five months ago, my life changed, and I joined a group that I wished didn't exist. I became a pediatric cancer patient. My name is Niki, and I am 17 years old and a senior at Kutztown Area High School. The past 5 months have had some highs and lows, but more highs due to the extreme outpouring of support I have received from not only my friends and family but also my swim, school, and Kutztown communities as well.
My story does have a happy ending, but I will tell it from the beginning. I am a District 3 PIAA Gold Medalist and a competitive YMCA National Swimmer. I decided in the fall of 2016 to focus on swimming. I started to feel some chest pains in late September/early October but just assumed I might have pulled a muscle. By November, I still wasn't feeling quite like myself, but figured it was from the high intense training the sport of swimming brings. I swam at the Junior National meet in early December and had issues breathing. I could not get out of the water without gasping for air and feeling extreme pain in my chest area. After that, I became sick with the flu and told myself that is why I was struggling with not feeling the best.
In January of 2017, I still wasn't swimming well, and many people thought I hit my peaking point as a sophomore. But I knew that wasn't true. I still was giving it my all in training but seemed to go backwards. My mom took me to the doctors after a meet and I was diagnosed with having had mononucleosis. I decided to take a week off of training. I then returned to what I loved to do. I still was feeling exhausted in the water but told myself I had to keep pushing to try and get over the hump of fatigue associated with mononucleosis. In February, I had this constant cough that wouldn't go away. It started deep in my chest and never came to my sinuses or throat. Living off of cough medicine and cough drops, I saw the doctors another 3 times - being diagnosed with a viral infection, pneumonia, bronchitis, and so forth while my mom asked about chest x-rays. On April 2, while being diagnosed for asthma, my mom asked again for a chest x-ray and they granted it. That is the day that my life was turned upside down.
I was admitted to the ER and the PICU at Lehigh Valley Health Network. I was told I had a large mass in my chest cavity and fluid around my heart. I had emergency surgery to remove over 400 cc's of fluid. I did not return from the surgery awake. The doctors could not remove the ventilator tube due to the mass in my chest collapsing my airway. After that surgery, the doctors weren't sure if I would even make it through the night.
After many days of being under complete sedation in the PICU, and five tries to come off of the ventilator, I finally woke up six days later. During that time frame, I went through three surgeries to try and diagnose the mass. Two biopsies later, I was diagnosed with Primary Mediastinal Large B-Cell Non-Hodgkin's Lymphoma (PMLBL). Waking up from what I thought was a dream, it was terrifying hearing the three words: "You have cancer." I didn't know what to think. I was scared knowing that everyone in my family that has had cancer hasn't survived. I didn't want to die. I had so much life to live! I havn't even graduated high school yet, let alone college. I had many goals for myself that I still wanted to achieve and wasn't about to let this get in the way of that.
I started chemotherapy the day I woke up. I didn't know exactly what to expect, but I knew chemotherapy can come with many side effects. Thankfully, I got to go home a few days later. I came home to many balloons, get-well cards, gifts, food, and so much more. I had so many visitors, including administrators from Kutztown High School, family, friends, and people I haven't seen in a long time. It was heartwarming knowing I had so much love and support surrounding me during this difficult and confusing time.
I completed 18 weeks of chemotherapy. I was on a 21-day cycle, with the first 5 days staying at the hospital for a chemo infusion and the rest at home recovering. I tried my best to keep busy while staying in the hospital; working on schoolwork most importantly. Thankfully, my teachers were extremely supportive of me during this time and helped me complete my classwork so I could finish my junior year. Since I am a swimmer, I am used to working out a lot. I started physical therapy with my swim trainers at Mountain River Physical Therapy and started to build back muscle I lost. It was hard because sometimes in between my 6 rounds of treatments, I made emergency visits to the hospital due to fevers, infections, and blood clots. As frustrating as that was, I started to feel stronger than the past winter months even during the chemotherapy.
Each treatment brought more exhaustion, but I definitely tried to stay as positive as I could through all of it. During something as grueling as chemotherapy, positivity can make a huge impact on the physical, mental, and emotional aspects of the whole process. Positivity is the best medicine, and that is definitely something I have lived by during the past few months.
After treatment was complete, I was due for a PET-CT scan to confirm everything was dead and gone. When looking at the results, there was a small area that was still lighting up on the scans. The doctors wanted to confirm that area was dead by performing a biopsy on it. I went into surgery again and came out with a chest tube, which was very painful, but I knew it needed to be done. Two days after my biopsy, I got the call from both my surgeon and oncologist that the biopsy came back negative! I was so excited! On August 24, 2017, I was declared cancer free and officially in remission. It was by far the BEST way to start my senior year. In the beginning, I never thought I would get to this moment, but I am so grateful that I did!
I can't thank everyone enough. I would not have been able to get through this without the support from my family, friends, and the community. My parents have been the strongest people throughout all of this. They have supported me through each doctor appointment, blood work visit, hospital stay, and Emergency Room visits. They have been there with me when I needed a shoulder to cry on or just a good laugh. I'm forever grateful for them. My siblings have truly been amazing as well. They have helped me out so much with simply getting more water for me or massaging my feet when I ask them too. This experience has put them through so much as well, and they have been incredibly strong. My friends have been my saving grace. From my school friends and swim friends, I have experienced so much love and support. Each text message, visit, and gift has meant the world to me, and it has kept my spirits up throughout all of this. The community has been amazing, through winning prom princess, having green lymphoma ribbons on the Kutztown Dolphin summer swim caps, displaying a quote I live by on the back of the Boyertown YMCA Summer Swim Team t-shirts, many home-made meals, and so much more. I can't express how thankful I am for the support of "Team Niki." I'm at a loss of words for all of it.
Thank you to each nurse and staff member that has been there for me while I stayed on the fourth floor at LVHN. You have done so much for me and made my time there comfortable and I will cherish that forever. Thank you to those special nurses, doctors, respiratory therapists, and staff members from the Pediatric Intensive Care Unit. You saved my life and supported me during the rough time when I woke up and you helped answer all my questions. Thank you to everyone in the Emergency Room, who was so supportive and dressed me with Wonder Woman stickers. A special thank you to Sloane, the outpatient clinic social worker and pediatric cancer mom, who is an amazing person and a wealth of knowledge. Finally, I can't thank my doctors enough. Dr. Hagstrom, Dr. Bautista, Dr. Boetang, Dr. Umaru, Dr. Wheatley, Dr. Relles, and Dr. Misselback: THANK YOU! Each one of you has been amazing. You have made this experience great by truly explaining everything and giving me your undivided attention. Every one of you saved my life, and I can't express enough gratitude and appreciation towards you.
I am proud to say that I will be starting my senior year on time! I will be going on recruiting trips for swimming in hopes of verbally committing by sometime this fall. I will be graduating in June of 2018 to further my academic and athletic career in pre-med and swimming. I would love to focus on pediatrics to help kids that are going through the same thing that I went through.
Thank you to PCFLV for supporting me and allowing me to share my story. The support everyone has given has helped me tremendously and excited me for my future! I can't wait to see what's to come!
Edited by PCFLV to add: PCFLV will be proud and honored to provide Niki with a $3,000 scholarship to help with her endeavors in college. Our scholarship program is an important piece of the support we provide local kids who have or are fighting cancer!
#TeamNiki, #FightCancer, #BeBoldBeBraveBeUnafraid, #PositivityIsTheBestMedicine