I have been meaning to write this post for a long time, but I never knew if I had the right words to say. I don’t consider myself a great writer, yet I am thankful to have this blog where not only can I document memorable moments in my clients’ lives, but personal memories of my own. At the end of 2013, my world was forever changed. On Dec. 30, 2013, my beautiful, 19-month old niece Kylie was diagnosed with stage 4, high risk, Neuroblastoma cancer. Time to go back to the beginning.
Trent and I were on a mission trip in Belize. We left on December 26, 2013 and when we arrived we were cutoff from the outside world. Our days started at 5:30am and they ended at midnight. It was awesome seeing God work miracles and not once did we miss catching up on social media or have an itch to connect to wifi. We knew it was pointless to have our phones, so we turned them on airplane mode and we left them in the nightstand next to our bed.
Prior to us leaving, my mom asked us to keep Kylie in our prayers because her eye was bothering her. We had a layover and I called my mom to check in and she said that they are giving her medicine and doing a few tests to see if she got bacteria in her eye. We didn’t worry much about it because kids are always getting colds, stitches, bumping into things, and terrifying their parents with their clumsiness. I look back and I can’t image the stress my parents experienced with our sprains, fractures, broken eye sockets, broken ribs, concussions, and all the painful moments we put them through with high school sports and goofing off with our friends.
Three days into our mission trip, Trent and I had one of the most powerful experiences. We were seeing God change the hearts and lives of so many people. We were on cloud nine and feeling so blessed to be together and experience this with one another. We were laying in bed and all of a sudden Trent’s phone rang. It was eerie because our phones were not connected, we didn’t have signal, and they were not supposed to receive any text messages/phone calls. Trent picked up his cell and his face instantly went pale. He passed me his phone and my tearful mom gave me the worst news. While we were gone, they learned that the pain behind Kylie’s eye was a tumor. Each day they went back for more tests and each day they received worse news. She had several tumors, she was diagnosed with stage four Neuroblastoma cancer, and they think Kylie has been suffering from this cancer since birth. It was the longest, saddest, and one of the most heart wrenching nights of my life.
Kylie displayed signs of pain that people didn’t notice until she was diagnosed. When she would eat, she would point to her jaw and say, “ow.” When people would pick her up, she would grab her hips and say, “no” or “ow.” She would receive frequent checkups and doctors were always telling my brother Luke and his wife Bree that Kylie was exceeding in all her tests so they didn’t think much about it. They especially didn’t think the pain was caused by tumors.
Once Kylie was diagnosed, everything came at her hard and fast. It wasn’t like snowfall that piled up quickly. It’s was as if someone had snowballs prepackaged and they threw them right at her. The tests, the IVs, the scans, the labs, the medicine, the pokes, the chemo, and everything else in between quickly followed. She went from dancing on tables to being confined to a hospital bed. I remember just sitting on my computer looking at pictures of her and wondering what the heck happened?
Chemo was hard on everyone. For so long, we didn’t know Kylie was sick and it provided visible signs of the trials she was about to endure.
Kylie is pricked and probed all day so we all miss our snuggly baby. Last night, Grandpa Larry said that he is looking forward to the day when he can hold her without anything connected to her. Often times, you’ll sit by her and you’ll receive the heisman. This picture always cracks me up!
But the best days are the days when she gives you a little hug or a pat on the bed allowing you to sit/lay next to her. Even though, she doesn’t like to be picked up, on the of worst days, you can still walk in the room and she’ll lift her arm and wrap it around your neck and give you a tiny hug. Those are the moments that mean the most!
Throughout this experience, I have never been more impressed by my brother and his wife. We have all struggled with our niece, cousin, grand baby, and friend getting sick, but I cannot imagine the pain they feel knowing that their daughter spends each day fighting for her life. People ask where Kylie receives her strength and the answer is simple, she receives it from her parents. Bree sleeps with Kylie every night in the hospital and they share a bed. The room is bright, there are constant noises from the machines, and doctors frequently walk in to check in on Kylie. She never sleeps, she has no time to herself, and yet you never hear her complain. Bree is hopeful and a mother on a mission. Morning to night, she is always tending to Kylie and seeking out the best treatments and options for her little girl. One of the only complaints I have heard from Bree is that she gets annoyed when people leave her messages saying that they feel bad for her. She told me, “I feel bad for them because Kylie isn’t their daughter. She is the most beautiful, amazing baby in the world.” Afterwards, she hopped into the hospital bed with Kylie and they fell asleep face to face. It’s always hard visiting my brother because he always looks so tired and worried. Luke is usually the life of the party and the class clown. A few weeks ago, I visited my brother in the hospital and he told Bree to go home and rest. She was in the hospital for over 20 consecutive days. When she got home, she found a bouquet of flowers waiting for her. My brother works night shifts and he works hard to provide for his family. However, he powers through each day and he continues to do whatever he can for his wife and daughter. One night, Kylie didn’t want to lay in bed and my brother stayed up late rocking her in a chair. He was falling asleep, but he still didn’t move until Kylie was fully knocked out. Luke is a tall man and it was so sweet to see him climb into the tiny hospital bed and fall asleep with little Ky. It’s already squishy quarters and Kylie is a bed hog, so it was amusing to watch them tetris themselves into their bed. God has blessed Kylie with two parents full of strength, love, determination, and hope. Those same virtues shine through Kylie each and every day.
What can you say about family. You can’t live with them, but you can’t live without them. They partake in some of the best memories of your life and unfortunately sometimes the worst. Like many families, we have experienced our times of trials. We have experienced pain, hurt, betrayal, and all the drama in between. However, we also experienced years of laughter, love, friendship, and bonds that only family’s can relate to. We may not agree on our day to day choices, but we have learned (or we at least try) to respect the differences. Through it all, one thing we can all agree on is our unconditional love for Kylie. God has changed the hearts of so many and the biggest change I have witnessed is the hearts of my family. What an amazing testimony Kylie is sharing. A testimony of love, forgiveness, strength, and selflessness. God displays that to us each and every day and He shines His light through Kylie in every waking moment. If only we could all portray Him more (like Kylie does) in our everyday thoughts and choices. The best you can do is keep on trying!
Luke and Bree’s biggest support system is their family. However, when we walk into the hospital, Bree has rules that we must abide by. We cannot cry in front of Kylie and you must just love, laugh, and play with her at all times. When our families visit, they entertain Kylie by coloring, puppets, movies, tickling, and all the fun and joyful things that you can think of. When Kylie see’s her grandparents, her face instantly lights up. The grandpas are her best friends and the grandmas bring her so much comfort. They walk into the room and she greets them with arms stretched out wide. I love when Kylie visits with her aunts and uncles. They all are so playful and I love the energy and silliness that they bring out of Kylie with each visit. My hubby is always taking the pics and I realized he is never in them! Sorry Trenty!
Kylie has her good days and her bad days. I don’t know how she does it, but she still manages to smile and be goofy. When she was walking, she would always go around and say hi to all the nurses and walk by all the hospital rooms and wave at the patients. She has a heart for people and for life. She is blessed with such a goofy and joyful spirit.
However, even through the smiles Kylie spends most her time fighting the challenges that are thrown at her each day. Sometimes, it takes everything she has to keep on fighting.
Kylie had a Facebook page created so that people could be updated with her journey. The emails, Facebook messages, letters, text messages, and phone calls came so overwhelmingly to Bree and the rest of the family, that they thought this would be the easiest way to keep people connected and updated. Within three days of the news being shared on Facebook, Kylie received seven thousand followers. In three months, she has reached out to over twenty thousand followers. It’s unbelievable how many hearts Kylie has captured. Family, friends, and strangers come together and continually organize outreaches and fundraisers to support Kylie and create awareness. They paint the town pink, they partake in meal preps, they host concerts, they give percentage of their proceeds, and day in and day out they give never ending support and prayer to Kylie!
Last night, they had a Prayers for Kylie benefit at the Hardrock Hotel in Downtown, San Diego. Hundreds of people came to show their support. It was an evening filled with amazing local vendors, yoga, spa treatments, photo booths, and constant thoughts of Kylie. Thank you to everyone who came out!
My favorite part of the evening was when we Facetimed with Kylie. We were able to walk around with my phone and have all her supporters wave and send their love to her. It’s one thing seeing pictures everyday, but to witness her moving around and looking right at you is a totally different/powerful experience. I would walk up to people and when they saw Kylie on the screen, they instantly melted and many said they received goosebumps just looking at her. She’s one special little girl!
If you made it to the end of this post, thank you for going on this journey with Kylie. I’m so thankful for my niece and for the strength she shows me each day. She has blessed my life more than words can express and although I don’t always know what God has planned for my life or for the lives of my loved ones, I know He has a spiritual perspective that far exceeds my worldly outlook. He has a plan for Kylie and He has already utilized her determination to reach thousands of people. Her parents constantly rely on Him and now they are able to witness to thousands each and every day. Thank God with your blessings, praise Him through the storms, and seek Him through the trials… even when you don’t understand the circumstances. He will never leave you nor forsake you. He romances you with every sunrise and sunset and sends you little angels to show you how much He loves you. Kylie is our little angel and she truly is God’s little warrior! I love you Kylie!
Pictures are a mix of Analisa Joy Photography and iPhones.