ROOMS TO HEAL BY CARSYN NEILLE INSTALL DATE: JULY 7, 2019 - JULY 13, 2019
Kara Evan Khamo - a name that rings of both incredible power and crippling tragedy. Kara was named after her father’s best friend and battle buddy, Simon Evan, who had died after returning from his deployment in Iraq 3 years prior to Kara’s birth. Kara was the name of Simon’s fiancée . Kara Evan was born both headstrong and feisty. She marched to the beat of her own tune and could light up an entire city with the fire inside of her. She was born a warrior.
Kara was 3 years old when she was diagnosed with stage 4 Neuroblastoma - a form of childhood cancer that her doctor defined as the worst of three possible cancers for which she was at risk. Although her parents knew that Kara’s prognosis was not promising, and that the battle would be a difficult one, they resolved, as any parent would, to do everything that they could do to save their daughter’s life.
Kara complained of back pain for 2-3 months prior to her diagnosis, and was in and out of urgent care and doctor’s offices. In January of 2016, Kara spiked a fever that stifled her desire to eat, drink, or walk. She was taken to the ER at CHOC, where her test results were returned with concerned looks on her doctor’s faces, followed by a consultation with oncology specialists while Kara had her pain managed enough by IV to sing and dance in her hospital bed. It was then that her parents knew that something was terribly wrong. A heavy, knowing dread danced in the pit of her mother’s stomach. The doctors treaded lightly through the conversation, but Kara’s father very quickly drew his conclusion from the facts that they were given - he knew in his heart that what they had hoped to self-diagnose as chronic arthritis in their daughter was something much more crippling. He knew that it was cancer.
Kara was admitted to the hospital after her doctor had delivered the news to her family. Her mother, 9 months pregnant with her third child, sat breathless in the corner as she hid her own hysterical tears. Kara didn’t understand what was happening within her body. After spending a few days in the hospital, she said that she was better and that her back no longer hurt. She wanted to go home. “How many SLEEPS,” she asked, “until we get to go home?” Kara had lost weight and had to remain connected to an IV pole, which she coined as “Polly the Pole.” She began acquainting herself with the oncology department staff and other patients on her floor. Between testing and treatment, Kara was the same joyful little girl that she was before she was admitted.
During Kara’s stay, her mother went into labor 3 weeks early and gave birth to Kara’s little brother. She returned to CHOC the very next day to be with Kara and to attend a Roadmap meeting - a meeting wherein specialists work with the family to set a detailed treatment plan to fight aggressive diseases. Kara’s mother and father sat, overwhelmed not only by the information that they were forced to digest and choices that they were expected to make during the meeting, but also by the fact that the time had come to tell 3 year-old Kara why there would be many more “sleeps” before she could go home.
Her parents depersonalized the disease by telling Kara that there was a monster in her body that was making her sick. Kara did’t cry, but she was visibly disappointed. From that day forward, Kara was stung by guilt and would apologize when she was having a rough day. The medical team started treatment immediately. Kara had a central line placed in her chest, which she cleverly named “Eyeball.” As she settled into her new temporary home away from home, she guarded her medical equipment by exchanging every kid’s “what’s the secret password” game for “but first, you have to smell my feet!” Kara so bravely accepted what she could not control and challenged what she could. Her first two rounds of chemotherapy went well. But the treatments grew tougher and more invasive with each one. Kara experienced fought dangerous infections. She suffered a seizure. She wouldn’t eat, and her hair began to fall out in large clumps. But in her innocence and incredible courage, Kara recovered from it all. She wore a sword on her back. She embraced being a ninja. Kara never lost her spirit.
As Kara’s time in the hospital went on, her parents grew distant. They blamed themselves and each other for pieces of this nightmare that were out of their control. Afraid to allow themselves to be vulnerable, they fought the same battle but stood ay odds. There is no cure for heartbreak when your child is at war. It was one foot in front of the other for Kara's family, until her grandfather visited and encouraged them to attend a church service in the hospital. They didn’t know it then, but all of their lives would be forever changed the day that just a little hope was restored. Together, this warrior family learned to pray and walk by faith. Kara began to ask her parents to pray when she wasn’t feeling well, and her mother clung to the peace and comfort in knowing that someone bigger than herself was in control, and that Kara’s belief in Jesus would carry her where her parents couldn’t.
Several months went by and Kara was well enough to spend her 4th bday party at home with friends and family. At every bittersweet moment, her mother wondered how many more birthdays - or how many more days - she would have with her daughter. Kara was in and out of hospital for 15 months. In that year, she spent over 150 days in the hospital. And on all 150 days, Kara was BRAVE. She developed her own coping strategies. She comforted her mother. She kept her sword on her back. One year later, Kara’s annual review returned with unfavorable results. The treatment that Kara had endured was ineffective. Her treatment team was forced to deviate from the original plan and Kara was selected to participate in a trial at Seattle Children’s Hospital. Her and her mother spent one week in Seattle that March. To Kara, it felt just like a vacation. Her illness was well-managed and she was able to explore the city alongside her mother. Kara’s family returned home and later received a call in early April that she was eligible to return in May for more treatment.
Kara celebrated her 5th birthday on April 13 and was admitted back into the hospital that day. Her nurses decorated her hospital room and surprised her with a “birthday party.” Kara shined more radiantly than ever on her birthday. She had cake, and played games, and opened presents just like any other child her age. She smiled into cameras and hugged the people that she knew loved her. Kara’s mother felt that day that her time with Kara was short, but she had no idea how short it was. On April 24, 2017, Kara woke up from a nap and asked about her uncle, who had passed two years prior. She said that she missed him and that she wanted to be with him. Her parents reminded Kara that her uncle was in Heaven with Jesus, and that they would all see him again one day. Kara became upset, and asked her parents to pray with her. Shortly afterward, Kara said that she wasn’t feeling well just before she lost consciousness and collapsed in her father’s arms. Kara’s mother called 911 as her father carried her out onto the driveway to wait for the ambulance to arrive. Once they arrived, Kara was rushed to a local hospital where she remained, unconscious, as a machine breathed for her. After what felt like an eternity, a doctor came out of the triage room and asked Kara’s parents, “We want to know how long you want us to keep going. Before you answer, why don't you take a look at your daughter.” Kara’s mother and father entered her hospital room. She had was unresponsive, her monitor showing signs of the life leaving her body.
Kara’s body was present, but her parents knew that in essence, she had died at home. Her father stood, composed, as her mother settled her hands onto her baby’s thigh and prayed what would be their very last prayer together: Tears overflowing, she surrendered her daughter to her Creator. Immediately after the prayer was prayed, Kara's body began to show responsiveness to the life-saving measures. She stabilized just enough for the doctors at the local hospital to feel she could be transferred to Children's Hospital of Orange County, where she received oncological care and was surrounded by staff that was familiar with her. Kara received a brain scan in CHOC's ICU that revealed a serious brain bleed. The doctor informed her parents that surgery would be risky, resulting in a loss of the quality of her life if they intervened. Kara's parents called their friends and family and invited them to say their final goodbyes.
Through the night and into the early hours of the morning, the family was visited by a team of doctors, nurses, child life specialists, and music therapists. This had become their second family during all of Kara's hospital stays. Their immediate family gathered as kara was taken off of life support at 2pm on Tuesday, April 25. She was 5 years old. Kara's family stood, heartbroken, as her nine year old brother, Robbie, clung to his sister, crying in agony. With shortened and shallowed breaths, he whispered that he loved his sister and was going to miss her so much. The extended family stayed and listened as Kara's mother spoke to them about what Kara had taught them all - Her story was one of love, patience, kindness, and generosity. That day, Kara's family was forced to leave CHOC for the first time without their little warrior in tow.
Kara's life ended, but her legacy did not. She is survived by her mother and father, aunts, uncles and grandparents, and two brothers - one who remembers who Kara was both before and after cancer invaded her body. She is remembered by her best friend Julian as “One-punch man and kara ninja warrior” and by the 150 gifts that she made for the people that she had come to know during her stay at Children’s Hospital of Orange County - "I hope this lotion makes you feel better. Love, Kara evan khamo.” Lavender and Rosemary scents will dance down the halls just like Kara once did. And those people will be reminded of vibrant, feisty, larger-than-life Kara Evan Khamo for all of the rest of their “sleeps."
For Kara’s family, a Room to Heal by Carsyn Neille would bring closure that will work over time to cleanse her family of the painful memories, leaving behind more of the beautiful ones. It would be a place where all of the sweet memories of Kara’s life can be refurbished and changed into something that honors her and invites in the calm. Kara’s room will no longer be avoided by family, but embraced as a place of rest in knowing that Kara was ours for as long as she was destined to be. And that God was with her for every step of her journey. Just as He has been with her family every day since.