Personal: Prayers for Kylie | Analisa Joy Photography | San Diego, CA Photography

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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?

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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.

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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!

Pin thisimageBut 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!

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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.

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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!

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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!

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Pin thisimageKylie 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.

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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.

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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!

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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!

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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!

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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!
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Pictures are a mix of Analisa Joy Photography and iPhones.

Stay Connected:
Facebook: Prayers for Kylie
Instagram: @prayersforkylie
Website: www.prayersforkylie.com
Funding: Go Fund Me/Prayers fo Kylie
News Coverage: NBC San Diego

  • Robin Donley - Beautifully put Ana. Thanks for sharing. Of course, lots of love, hugs and prayers for your family and dear sweet Kylie.
    XOXO
    RobinReplyCancel

  • Carrie - I am speechless…. Analisa, you ARE a writer. What an amazing thing you have done here with such a beautiful message of Kylie’s story and sweet pictures, capturing what amazing parents she has in Bree and Luke. I am in awe of their strength, gratitude and grace in this circumstance. It truly is evident where Kylie gets her spirit from. All the while pointing your readers back to Jesus. I am blessed for having read this. My heart is full. ReplyCancel

  • laurie erickson - Analisa,

    I’ve told you many times that you are an amazing photographer, and you are!!! In fact, I have often been very touched by your beautiful photos, BUT, this time I was moved to tears by your heartfelt words. I’ve been “following” Kylie on facebook, and getting updates from your Mama, and praying, of course. Thank you for sharing your sweet, thoughtful, hopeful and heart-wrenching story. Kylie is soooo loved by so many….. and so are you, sweet Ana!

    Love you,
    Momma EReplyCancel

  • Danica - This is beautiful and loved reading every second of it. Thank you! Lots of prayers from my family to yours. God bless Kylie, She is such a beautiful little girl.ReplyCancel

  • Deanna - I don’t know your family personally, I am a sister in Christ. After reading your post, I have fallen in love with Kylie. Such a young girl with a heart of gold. Looking at the pictures, I smiled, laughed, and cried. Her parents are amazing, a true testimony of trusting God! A friend from work has a good friend whose daughter was just diagnosised with neuroblastoma stage 4. I will keep Kylie in prayer. Thank you for the wonderful blog. God bless your family.ReplyCancel

  • Jamie - thank you for sharing her with us we will pray for her and the rest of the family she is one amazing girlReplyCancel

  • Mary St. Claire Dunstan - Thank you for your blog about Kylie. It touched my heart. I prayer for Kylie and family several times during the day. I can’t wait to get up in the morning and check on Kylie. My relationship with the Lord has grown because of Kylie.
    Miracles are happening.
    “With people this is impossible, but with God all things are possible.”ReplyCancel

  • Julie Schuettenhelm - Beautifully written!!ReplyCancel

  • Robin - I love reading your blog, Analisa! I pray for your family everyday. Thank you for sharing.ReplyCancel

  • Angela Messer - This is so beautiful. I don’t know Kylie and your family personally but I do know a friend of this family.
    Ever since my friend asked for prayers for Kylie months ago, I have prayed and followed every post, she’s such a sweet little girl and it melts my heart to see her going through all this pain.
    God is in control and he has some special plans for this sweet precious baby.
    Prayers will continue.
    Thanks so much for this amazing blog.
    God Bless your family.ReplyCancel

  • Amy - Love, love, love following this beautiful and amazing little Angel ❤️ May God Bless her and your family. Thank you for continuing to share her story with us.ReplyCancel

  • Joey Shull - Thank you for the beautiful testimony of the powerful love of our Lord. Giving Kylie and her family faith, hope and love to carry on each day. Their strength comes from
    Him and they selflessly share it with all of us. God bless Kylie to carry on His hope. God bless your family. You have all been true witness of God’s unfailing love. I am blessed to read and follow Kylie. I am praying everyday for all of you.ReplyCancel

  • Tracy Bailey - I have been praying for Kylie and the family and am so blessed that you have done what you do to let us in to your lives. He is a beautiful little girl. Was wondering what size the shirts go up too and if you are still selling them and if so how much. I believe my brother Jeffery Wolf works with Kylies dad at the San Diego jail. May it rain healing drops on this amazing family and Kylie.ReplyCancel

  • Jolene Ferrer - Kylie has stolen my heart….ReplyCancel

  • Tamra Todd - Wonderful recap from the very beginning. Still praying for God’s miracles. Kylie is an angel and one of God’s little lights that shines on our hearts and minds.ReplyCancel

  • Kyra Ferreira - I love your honesty in this post. It highlights how mighty our God is and gives Him the glory despite the disease. Thank you so much for sharing! Kylie is in our prayers constantly; I am awed at the amount of love this little girl has. It’s amazing <3 She is a gift.ReplyCancel

  • Maggie - This is so beautiful. What a lucky girl to have all of you. She is such an amazing little person and a huge inspiration. I think about her every day and she is constantly in my prayers. As a cancer survivor and mother of a 9 month old girl, her story touches me deeply. God bless you all. :)ReplyCancel

  • sarah Trezise - This is so beautiful what you have put into words & pictures. Kylie is one special little girl & i pray nightly for her miracle of her cancer to be healed. There is so much love for you baby girl, I m in Melbourne, Australia & think of you every day. Keep fighting cherub you are so very strong, i admire you more than you ll know. Love & healing prayers to you all xoxoReplyCancel

  • Nicole Wall - Beautifully said.ReplyCancel

  • Tori - I made it through the whole thing! Thank you for sharing Analisa. your heart is precious towards your niece and whole family included. I really admire your whole family for pushing through this trial just knowing and trusting that God can get you through this. It brings tears to my eyes hearing how precious Kylie is and has become to so many people. She is a special little gift! We are praying for you all.ReplyCancel

  • Michelle Childers - Yes, it is an amazing blog and beautiful. I have come to watch over Kylie here on facebook. She is so beautiful and full of life. I believe in God and that he has a plan for all of us and has chosen Kylie to be his warrior. Your writing is inspiring and has really helped me understand myself as well as opening my eyes to others. prayers are for her everyday ReplyCancel

  • Pam - God Bless all of you. Thank you for sharing your story, I also have a friend that her daughter is fighting neuroblastoma so this was really touching to read. I will be praying for Kylie also.ReplyCancel

  • Prayers for Kylie - Family Tribute Post - Mom's Lifesavers - […] wanted to share this touching post from one of Kylie’s aunties, Analisa.  It’s so special we had to share it.  It was so […]ReplyCancel

  • Bernie - LOVE & PRAYERS………..BEAUTIFULLY WRITTEN……..AND THE POTOGRARPHY SUPERB……LOVE TO YOU ALLReplyCancel

  • Addie - What a wonderful post! Your family’s strength is inspiring and I feel lucky to be able to call you a friend. You used just the right words darling, and I definitely shed a year or two. Many prayers and much love for little Kylie!ReplyCancel

  • Brenda Rosas - I actually don’t remember how I found out about Kylie but I immediately stopped what I was doing and fell to my knees in prayer. I pray for her everyday. I have a grandaughter a year older than her so this hit very close to home. Her fsmily amazes me and gives us all so much hope.ReplyCancel

  • Dacia McComb - Never a day that goes by that I do not think of Kylie. Praying for her always. Even my 5 year old remembers her in his prayers at school and home. Thank you for allowing us to be with her during this journey. I do not know her but my heart is bound to her.ReplyCancel

  • amanda mcArthur - love it Ana. This is beautiful.ReplyCancel

  • Kelli Rayzor - What a beautiful tribute!ReplyCancel

  • Sherrie - The best heartfelt and very touching blog ever written about such a special lil Angel with a big heart. Nicely done Ana.ReplyCancel

  • Week In Review 3-23-14 - Mom's Lifesavers - […] our prayers and well wishes to beautiful Kylie. We wanted to share this touching post from one of Kylie’s aunties, Analisa.  It was so insightful to read the family perspective on […]ReplyCancel

  • Jessi Edison - I have followed Kylie’s journey from the beginning. Quite a few of my friends are child hood fiends of Bree through gymnastics. Her story touched so many from the start. This was written so beautifully. We say our prayers for Kylie every night. She is such a fighter and so so beautiful. Plus she has an amazing support team. Thank you for letting us all on this journey. Prayer is powerful. I will share too. The more prayers the better:).ReplyCancel

  • Cheryl Paulson - Absolutely BEAUTIFUL!! Thank you for sharing your story with all of us. My heart goes out to all of you and I pray that Kylie will defeat this ugly disease. The love and happiness you all show her is so important – you all are doing an amazing job!! God Bless you All <3ReplyCancel

  • Michelle Gilmore - Im in tears… What a beautiful story. She is so blessed to be loved by so many!ReplyCancel

  • Alan Cathcart - Ana, thank you for sharing Kylie’s story. It was good to meet you today, and perhaps not coincidence. Love to Kylie and all her family and supporters.ReplyCancel

  • Suzi - Tears, tears and more tears. God has touched my life through His Little warrior angle Kylie. ReplyCancel

  • Toby - Incredible blog! And I love your new website!!!ReplyCancel

  • Meg - This is beautiful Analisa!! I was really stressed today and every time I see you guys post something about this precious angel I remember what it’s all for! Many of my classmates now follow her and she continues to be our inspiration. Thank you for sharing, she has brought so much heartache, faith, tears, and joy to everyone. Oh, and you’re a wonderful writer!ReplyCancel

  • Taylor Tulao - One of the most beautiful posts/blogs I’ve ever read. Kylie’s story is one that always give me hope and hearing it from your perspective is just breathtaking. Thank you for sharing your love and pictures.ReplyCancel

  • Personal: Prayers for Kylie | Analisa Joy Photography | San Diego, CA Photographer » Analisa Joy Photography - […] A few months ago, I was able to fly out to New York to visit my brother, sister-in-law, and my niece Kylie. Most of you know her story, but if you don’t, my beautiful niece is name Kylie and she is my angel! On Dec. 30, 2013, she was diagnosed with stage 4, high risk, neuroblastoma cancer. She was only 19 months old at the time. They realized the best treatment for Kylie was out in New York so they packed there bags and they have been living in the hospital ever since (for more info, check out this blog post). […]ReplyCancel

  • Theresa Castro - I just wanted to say Thank You for sharing your family’s journey…Kylie’s journey. It’s funny how it came about….I was just scrolling through my Instagram and her beautiful face caught my eye….and from that day forward I was hooked. In 2006 I had my first child and before his father was able to return home from his Iraq Tour, he was killed by an IED explosive. My husband died two weeks after the birth of our son….never getting to hold him or even kiss him. You can imagine my confusion and anger….since then, my relationship with the Lord has never been quite the same. However, seeing and following Kylie has made me wonder and question my own beliefs. Do I believe in God….of course I do. Do I understand his reasons for doing things….nope, not one bit. I have been inspired by your entire family to seek the Lord in the darkest times…and seek him in the happiest of times. I still struggle, but my path over the last 8 years have become so much clearer and His reasons are starting to make sense.

    When I heard about the news that the cancer had spread to Kylie’s liver and had affected other organs giving her weeks to live, my heart just shattered. I honestly cried for days. I don’t know her personally, but I feel she has touched my heart and it was a way for God to lead me back to him. He has used Kylie as an instrument of love and faith to reach my heart, because for so long, my heart has been hardened by my grief and inability to understand how someone so good and so loved can be taken so fast without being able to say goodbye. I suppose God chooses the best and they sometimes are so very young.

    I woke up this morning and checked my feed only to find out the tragic news of Kylie’s passing. I know it was a personal moment with the family at her side…I just hope she didn’t suffer. My biggest fear was that her poor little body would or could not handle anymore pain….and so finally God took her. I’m sure she is running free with no boundaries and no wires attached to her. I asked my Angel to watch over her and play with her…My husband was always great with kids. She is truly a blessed soul.

    As I close this post, please know that I love you all with all my might and all my heart. I pray for easier days and to find comfort in knowing that she is in a better place. Your family and little Kylie have impacted my life tremendously….and she has helped me see the love God has for us all. God Bless you and your family always and God Bless Kylie!

    Kylie Strong!

    With love all the way from Guam!ReplyCancel

  • Daniela - I have been following Kylie’s story and I have been searching for ways I can help. In this post you mentioned that they thought Kylie had been suffering from the disease since birth, do you know if there is a prescreening test for neuroblastoma during pregnancy as they have for other diseases? Just curious if this can be prevented in the future as more advancements are being sought for a cure.

    Also, your post on not being angry with God was beautifully written. We more often than not praise him through good times and during our battles we tend to do the opposite. I am as guilty as many for this and when I feel like this I think of the song Blessed Be The Name of the Lord, in the line “You give and take away, my heart will choose to say blessed be your name”

    Kylie and her family are a constant in my prayers. I am sure I am one of many who have said Kylie’s life has changed mine. I am a fellow believer, but my relationship with God was distant until I came across the inatagram of kylies story and the unfailing faith and trust that her parents have in the Lord. What a glorious day it will be when they can see their precious daughter again!ReplyCancel

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