The only “C” word a child should hear on December 25th is Christmas! However, for Kaylee, her world came crashing down at eleven years old and this once special holiday will never be the same. Among her presents in 2018, would be excruciating pain, a permanent PICC line and port for chemo and other treatments, a ridiculous regimen of medication (that she didn’t even know how to swallow), a barrage of constant testing, a lengthy hospital stay (the first of many over the course of the next few years), and an unfathomable fear of the unknown.

 

Kaylee had been visiting her primary care physician and urgent care frequently in the months leading up to her diagnosis. She was getting UTIs quite a bit, random bruising, headaches, fatigue, and nausea. She was very pale, delirious, and weak. Her aching muscles and bones were thought to be just growing pains as she ventured her way toward puberty. On December 23, 2018, she was taken to the Emergency Room at San Antonio Hospital with severe pain in her legs, shoulders, and head. After performing some routine blood work, the doctor on call noticed some irregularities and decided to do more extensive testing. After a long wait, she came back into the room and told Kaylee, her parents, and younger sister (Brenna) that she believed it to be some form of cancer. She immediately set things in motion to have her transferred by ambulance to Loma Linda Children’s Hospital. Within two hours, Kaylee found herself as a resident on Floor 4800, the Oncology Unit at LLUCH, little did we know it would become a home away from home for years to come. On Christmas Day, she was officially diagnosed with Acute Lymphoblastic Leukemia (ALL) and the long journey to recovery began. At that point her road became, “Jesus Take The Wheel,” and the anthem, “Believe.”

 

She was not able to return to school to finish her 6th grade year due to extensive treatments, her immune system being severely compromised, and a variety of medical issues/side effects complications that frequently arose. She did her work from home and only attended a few functions to see her friends and teachers while wearing a mask and gloves (she was COVID prepared before anyone even knew what that was). She didn’t get to start Junior High with her peers, but was eventually able to return to school in a limited capacity, often missing extended periods of time due to hospital stays for complications, illnesses, and further treatment. Despite all of the setbacks and pain, she never lost hope of one day being able to say/sing, “I’m A Survivor.” 

 

It is impossible to describe the impact childhood cancer has on a family.  It is a devastating diagnosis, even when you are told “this type of cancer has the highest survival rate.” There is no other choice than to pull together to try to defeat this invisible foe.  Team Kaylee seemingly formed immediately after hearing the news. “Smiles for Kaylee” t-shirts and the orange wristbands worn by family and friends are a constant reminder of the struggle each of us has had to endure. Kaylee’s life was forever changed in the blink of an eye and the impact this disease has had and will have on her is immeasurable. Her parents had to determine how to split time between Kaylee and her younger sibling, trying to remain positive and optimistic even in the most difficult moments. Juggling schedules became a logistical nightmare at times. An adult needed to be at the hospital with Kaylee constantly to receive necessary medical information, to give permission for treatments, to make life-changing decisions, and to calm the fears and anxiety of an eleven year old girl even when their own went unchecked. Having a seven year old sister at home meant that someone had to help care for her as well, especially since she did not understand what was happening and was wondering if her role model was going to live. Attempting to keep life as “normal” as possible during the most turbulent times. Someone had to be available to deliver items (clothes, food, etc.) or to relieve a shift at the hospital to help keep up the strength needed by all for the fight.  Even when Kaylee was at home, there were bandages that needed changing, showers to be given, a medicine regimen to adhere to, and appointments to be kept. None of us will ever forget the large file box that was once used to organize papers transformed into a portable med kit that followed Kaylee everywhere she went, or the large binder meant for schoolwork that became the “Bible” of important notes and schedules to make sure nothing was missed. Behind the scenes, a numerous army of people have provided essential support, time, and money to help in any way they can. Patient, parents, siblings, grandparents, aunts/uncles, cousins, and friends have unselfishly given of their time and talents to ease the pain and suffering cancer causes to all involved. When things get difficult, Team Kaylee is there to say, “We Are Family.”     

Kaylee is nearing the five year anniversary of her diagnosis.  She is a Junior at Alta Loma High School and is dreaming of graduating with the Class of 2025 and a future that was not guaranteed when she was eleven. She celebrated her Sweet Sixteen birthday on August 1st and looks forward to driving, choir performances/being in the school musical, writing for the campus paper, attending Brenna’s softball games, and Prom instead of chemo treatments, wound vacs, giving herself Lovenox shots to thin her blood, and prevent clots, flushing her port, and fissures. She has found her niche as a second generation ALHS Brave through the choir.  Music has gotten her through the best and worst of times in her life. She sings with a depth that can only be found in one who has seen and experienced more than she should have at her age. A song she loved performing last year, “Inveniam Viam,” can be translated from Latin to mean, “I will either find a way or make one.” She is determined to do just that and she possesses the courage to persevere.  She is an inspiration to all who have the pleasure of knowing her story. Kaylee and our entire family are grateful for all of the doctors, nurses, and medical staff that she has encountered throughout her journey. She is blessed to have Team Kaylee behind her since the beginning. She appreciates each new day and cannot thank everyone enough for the support she has received. As she prepares to participate in the High School Musical on her campus, she is reminded that, “We’re All In This Together” and she wouldn’t have it any other way. The rest of us are grateful to have Kaylee as our Childhood Cancer “Hero!”

– Michelle Laramie, aunt