April 2, 2002 ~ December 7, 2006
Rose, Kaylin Elisabeth, a 4 year resident of the South Bay, passed away on Thursday, December 7, 2006 in Torrance. Born at Torrance Memorial Hospital in CA, Kaylin was 4 years, 8 months and 5 days old when she died. She was born on April 2, 2002 at 4 pounds 3 ounces and from the minute she was born, she had to fight for her life. No one ever figured out what or why but she had multiple medical challenges: nasal passages not open for breathing, holes in her heart and other miscellaneous medical issues. A lot of doctors guessed at different Syndromes but none ever figured out an answer. From the first day being told that our sweet angel probably had a fatal syndrome but that we would have to wait ten days for test results to know for sure, we were in for the best ride of our lives. After three months in the Intensive Care Unit (ICU), (she was transferred from the local ICU after three weeks to Children's Hospital of Los Angeles (CHLA)), and the results that she didn't have one syndrome but possibly another, being accidentally given a life threatening infection at the hospital (that she fought and beat, while others couldn't survive the battle), we were able to bring her home (July 2, 2002) with all the necessary medicines and "gear": oxygen that she needed for two years, suctioning machine to hourly keep her "newly opened" (drilled) air passageways, heart monitor, oxygen monitor, breathing monitor, feeding pump (one surgery in the ICU had been to put a "permanent" tube into her tummy so she could get the calories that she needed to keep fighting/succeeding), and of course the hundreds or thousands of pieces of medical "stuff" that we needed to use with all these machines. Since Kaylin had been on a respirator for a lot of the three months, she had been tube fed (with milk from Mom for seven months) and was unable to swallow without risking aspiration and hence the feeding tube that we used for getting almost all calories into her for her entire and way too short life. She was blessed with grandparents that sustained and tirelessly gave her love, strength, comfort, singing, and playing, through every good or hard day, whether in the hospital or at home. There were special staff, doctors and nurses everywhere including our best friend, Alex, at the front desk (who generously gave Kaylin and her parents more caring, love, and extra ID stickers for Kaylin from the first day until a week before her last day), CHLA's ICU staff with so many, but especially Dr. Friedlich, Nurse Practitioner Karen, Aunt Annie, RN that helped us through the days and Aunt Delores, RN that cared for and sang to her nightly when Mommy and Daddy had to say goodnight after being by her side from early in the morning until late at night. Once she was out of the ICU (for later hospital stays), thankfully Mom and Dad were always able to stay with our sweet girl day and night. She was a blessed child and a gift to us all. We have always been surrounded by dedicated family and friends that have helped get us through every difficult day for Kaylin's entire life and of course with our loss. Thank You. Words cannot express enough now but please know that every prayer, thought, and help you've given to us and our angel is eternally appreciated. They have enabled us to live and love every precious second that we had with our dear and sweet angel.
At two and a half years old we got to share some wonderful family time on a relaxing cruise to Hawaii. By this time, our little fighter had overcome all the breathing issues, her heart had healed itself (while luckily the doctors waited to operate since she was still so small and medically fragile), learned to walk although still wobbly, communicate with real or her made-up sign language (all via so much hard work by Kaylin, doctors, nurses, three different kinds of dear talented therapists and her proud Mommy and Daddy, tireless Grandparents, Family, and Friends). As she walked in the surf, in Hawaii, on the beach, holding Daddy's hand (and then playing in the water with MaMa) she seemed so footloose and finally past life's toughest obstacles. This of course was a special little girl who had fought and won some very difficult battles. Each and every day of her too short life, amazingly enough, there was always something special and happy she did or said that made us feel like the most blessed parents on earth. Kaylin taught so many people what strength, love, and having the right priorities meant. On the cruise we made many (everyone on the ship) new special friends as Kaylin walked everywhere, blew kisses to everyone, and tickled quite a few toes on deck by the pool (initially we didn't know these people but after blown kisses or toe tickles you make lots of friends).
We were blessed by many great medical personnel as well as some heroic Doctors that really did love our sweet girl and would do anything at any time - e.g. meeting us at 3:30am in the Hospital Emergency Room, Operating on or around Christmas day, saving her life countless times, giving us the truth even when news was devastating, never giving up, and finally holding Mom close all day on the last day (and others to follow), sharing our pain, and getting us special hospital privileges for time to say goodbye to our sweet angel's strong little body. There were many, but at this time, we'd just like to express our love and eternal gratitude to our heroes and loved, Dr. Sylvia Mansour, of Torrance, CA (Auntie Sylvia - knew Kaylin as "my or our baby") and Dr. Ken Geller, at CHLA (who called Kaylin, "my little Tweety Bird"). Words cannot and will never be enough, but we were so blessed to have these tireless, knowledgeable, compassionate, loving, and hard working heroes to thank for caring, loving, and helping to give this gift of a special child to us for almost five years from the day we were blessed with her to the day we had to let her go. Led by Kaylin's strength and love, there could never have been enough days to love this angel but we lived and appreciated every second we had to its fullest. Never could we have traveled this journey alone and thankfully we never had to.
By the time Kaylin turned three years old, she started "big girl" (though she promised to always be Mama's baby) special education preschool, As she eagerly and happily went to class the first and every day thereafter, she was so small that it always looked like she only came up to the knees of the other kids and even though she had the littlest and cutest butterfly backpack, it seemed to drag on the ground as it hit the backs of her heels while she proudly carried her own snacks, notes, and creations, all by her self. I think she tipped the scale at about 15 pounds at this point. Every day as she went in, it was after hugs and kisses for Mommy and as she came out trying to walk with her backpack on (Mom was sure she would tumble over backwards) and holding one of her teacher's hands while frantically waving, saying MaMa and blowing Mom kisses as she eagerly waited at the gate on the other side of the fence. We always then sat on the sidewalk, counted, blew kisses, and waved to all the teachers, buses, kids, and drivers as they left to take kids home. The teachers and staff at LAUNCH school loved Kaylin so very much and for that we will always be grateful. Kaylin never really wanted to leave, in case any more buses might come, but eventually we'd enjoy our walks to the car (of course stopping at any stairs to go up and down, up and down, up and down, etc.) and then a fun time in the car for quite awhile (singing and dancing her special songs) while Kaylin stood in the driver's seat (Mom delegated to the passenger seat whether there was a car seat there or not. Kaylin was always convinced she could drive us home if we'd just let her), drinking ice water, just enjoying the days and each other. When Daddy got to pick her up, he had a lot of rules to remember. Every step in the routine was special.
Some of the year 2005, she was sick on and off (fevers, hospital stays for tests or antibiotics) although it never slowed her down and the doctors could never figure out "the answer" completely. At one point I counted 20 specialists at 6 hospitals. Nothing ever fazed my Angel. This is when she was in school, she walked with or played at the park daily with Daddy, and then we traveled on a wonderful cruise to Alaska. During this month of September and then as the year came to an end, our little angel had fevers for unknown reasons and just gradually got to feeling pretty lousy by December 21. She had dropped from 23 back to 18 pounds and yet we could have never imagined the future. Our faithful doctors kept by our side, when Mom just kept calling and coming back in because "something was not right". We were admitted to the hospital for a day to insert a surgical line so that they could treat her with antibiotics that hopefully would beat whatever infection (probably in the sinuses or hidden elsewhere) she was fighting. After a day of countless tests, unbelieved lab results, and retests (she couldn't be this healthy if her hemoglobin count was really a three) we felt kicked to the ground once again as our doctor friends broke the news that our angel now had Leukemia. It didn't seem fair.
After a month in the hospital and every kind of poisonous chemicals (chemotherapy) being poured daily into our baby (spinally, intravenously, and into her tummy) we continued at home mostly (with many air purifiers and air conditioning) through 9 months of different chemotherapy treatment phases with many weekly surgical spinal taps for testing and pouring in more chemo drugs. Our amazing girl, never complained, always smiled, blew kisses, and reminded us daily of our incredible blessing. With wonderful Oncology Doctors, especially Dr. Fu, Dr. Perumbeti and Dr. Tishler, Kaylin seemed to sail and fight through every phase just as brave, strong, and successful as ever. We reached the Maintenance Phase of Chemotherapy at the end of the summer, with virtually no setbacks and settled in at home, cautiously feeling victorious. Kaylin had been in "remission" (no Leukemia cells detected in her blood or spine) since the beginning of treatment and was "lucky" to have a kind of Leukemia that was 85% of the time curable. When it's your own baby and you have to wait for two more years of treatment and five more years of testing and worrying, anything less than 100% was not always comforting but Kaylin never allowed us to not be Happy (her favorite word) most of the time. Maintenance phase lightened a few of our restrictions we had lived with for almost nine months (no going outside and no going around others at all due to the reduced immunity state that is the result of chemotherapy) but we still had to avoid grass, parks, plants, open windows, kids, wind, schools, crowds, etc.. Kaylin made our home her happy playground and world while always remaining connected to others during masked doctor/surgical visits and tireless hours of frantically waving, smiling, blowing kisses, and opening (remotely) the gate to our neighborhood to everyone she could see passing our house or starting, ending, or just living their day. Her little beaming face in the window and kisses through the window daily before Daddy got back in the house after work lighted our and so many other lives.
We were blessed with a wonderful school system and district that provided Kaylin a very talented and soon to be loved home teacher (Miss Anna) and three therapists (physical, occupational, and speech) so our "big" girl could thrive. She tirelessly learned past or gained on her age appropriate learning level (including numbers, counting, colors, letters, signing, increased speaking, patterning, sorting, singing, dancing, drawing shapes/letters, cutting, and making the most incredible art projects that we could ever imagine). This was all while starting the two years of the Maintenance chemotherapy phase (including less frequent spinal taps but still taking daily, weekly, and monthly chemotherapy drugs), and enjoying our slightly increased freedom (nightly walks and escalator rides at the mall with Daddy, church with Grandma Rose on Sundays where she always insisted on helping Grandma carry her purse (Mom thinks it was bigger than Kaylin was but of course that never stopped her), and trips to stores or just out with Daddy for car rides to let Mommy rest). Kaylin was NEVER tired and ALWAYS happy. She was the definition of joy and love. Kaylin made friends everywhere she went either through blowing kisses, smiling her beaming little smile, or waving to anyone and everyone driving or walking. She seemed to cram three or four days into every one we were blessed enough to have with her. She, as always, LOVED Grandma and Grandpa Wright coming over (every day if it was up to Kaylin) since we could no longer go to their house (as before to spend the afternoon with them) and as many visitors or phone calls (Uncles, Aunts, Cousins, other family and friends) as possible. She also "spoke" with Grandma Rose usually twice a day (morning and night) since we didn't get to see her except on the weekends. Kaylin reminded and helped us on almost every activity, medicine, and especially every daily routine required or requested. She was our "assistant" for every activity, chore, or job that ever needed to be done along with the joys of daily playing ball (throwing and kicking), hide and seek, greeting outsiders, remotely opening and closing all gates and car alarms entrusted to her, going up and down stairs, tickling, blowing kisses, reading stories, watching the Teletubbies (on the rare slow moments), sharing, having a beautiful sense of humor, learning new things daily, exploring, dialing/answering the phone, being proud of accomplishments, playing cards, being her own person, smiling, walking, running, jumping, sliding, swinging, crawling through tents and tunnels with everyone around, signing, talking, choo-chooing around the house, singing ("Old MacDonald Had A Farm" was the current favorite but there were a lot of very interesting things on the farm, e.g. Grandpa driving a train with Grandma Wright in the back swimming, Grandma Rose, Mommy, and Daddy in the back sleeping and snoring (complete with All sound effects), Uncle Jeff riding his bike, slippery fish, sharks, dolphins, octopus, and of course the usual array of pigs, cows, horses, ducks, chickens, turkeys, and frogs), hugging, dancing, drawing, laughing, and being especially loving in every way and on every day. As someone said this week, she lived a "Big Life". Kaylin was ALWAYS happy. Kaylin was an amazing and strong little girl to have such a challenging life. You'd never know it from her that there was ever a difficult day. She was truly amazing. We and others learned so much more from her than we could ever teach to her.
Sadly, and unbeknownst to us (thankfully we think), we unconcernedly entered our last chapter of her short life. It seems now that she had the end completely planned to make it the best and easiest for us. An incredible little girl that is hard to continue on without. We love and miss you sweet pea.
Kaylin had a lingering cold for the last few weeks that seemed to make it difficult to get very much good sleep. She was gradually a little more tired than usual but all medical tests, x-rays, blood work, exams, and etcetera indicated no real problems. She began struggling more with a cough, started antibiotics and on Tuesday evening she had a fever which was controllable via Tylenol. Wednesday she had her speech therapy and the therapist said she was the most talkative she had ever been. Wednesday afternoon she worked with her teacher for four hours making Christmas cards with her hand prints as hugs for her family. She was very tired and went to bed a little early even though she insisted she wasn't sleepy. Except for being tired, it was a basically normal day. Before lying down with Daddy for her stories (lots of nursery rhymes and her favorite Winnie The Pooh story, "A Grand And Wonderful Day"), Kaylin snuggled and blew kisses to Mommy, signed "I Love You" and for the first and only time in her life was actually able to speak "I Love You" to Mommy. It was such a precious moment in time that we celebrated with extra Eskimo and butterfly kisses and Mom wrote the date down to remember for all time. At 5am on Thursday, Kaylin woke up coughing and Daddy put her on his chest where she slept a couple more hours. Next she then said she wanted to lie with Mommy and snuggle (or spoon as we called it) and cuddle under the blankets. We knew she wasn't feeling well and got Tylenol for her fever (this one seemed like all the others), wiped her forehead with a washcloth (which she eventually tossed off in her own little way), called and asked to come in to see Auntie Sylvia (Dr. Mansour), and started a nebulizer treatment to hopefully ease her breathing. With Mommy holding her and Daddy rubbing her neck as we nebulized, Kaylin quietly slipped away and died within minutes in our arms. We quickly bagged and performed CPR, called 911, and anxiously awaited our precious angel to fight back as she always had before. The paramedics were very prompt and Little Company of Mary emergency personnel worked very hard to revive her, but her heart would not respond. Gratefully, they allowed Mommy in the ambulance and trauma room as they tried to bring her back but finally had to tell Mommy that Kaylin was just gone. As Daddy and our Doctor arrived, our world had stopped.
We are grateful to all the hospital staff at Little Company of Mary (which included our next door neighbor) that fought to try to save our baby, knew when it was time to let her rest, and give us the time and respect to say Good-Bye on our schedule and in our way. Thank You.
Kaylin Elisabeth Rose was an inspiration and gift from God. From the minute she was born, she had to fight for life. She never quit. A stronger child it seems never could have existed. Life was never easy for her but she taught us so much about strength, love, and true happiness. We miss our sweet angel more than we could ever have imagined. A light of life and love is gone from this earth forever.
She is survived by her Daddy, Edmund Rose of Torrance, CA; Mommy, Karen Louise Wright Rose of Torrance, CA; Grandmother, Elizabeth Rose of Tarzana, CA; Grandparents, Sally and Bill Wright of Torrance, CA.
Aunts and Uncles - Jeff Wright of Torrance, CA; Art and Alice Rose of Santa Ana, CA; Jim and Liz Rose of Fort Collins, CO.
Cousins - Kelly, Saundra and Thomas Rose of Santa Ana, CA; Phillip, Darcy and Wesley Rose of Fort Collins, CO.
Loving and Cherished Extended Family - all of the family, friends, neighbors, teachers, therapists, doctors and nurses.
A Memorial Service and Celebration of Kaylin's Life will be held at First United Methodist Church at 243 S. Broadway in Redondo Beach, CA. at the NW corner of Broadway and Torrance Blvd, one block west of Pacific Coast Highway (or Highway 1), on Saturday, December 16, 2006 at 11am. A Reception will follow in the Church's Fellowship Hall. All are welcome and appreciated. Burial/Placement will take place at a later date at Green Hills Memorial Park. In lieu of flowers, donations would be greatly appreciated to Children's Hospital of Los Angeles (contact Donor Services Department at (323)671-3850), to The Leukemia & Lymphoma Society (http://www.leukemia.org/hm_lls ), or any place of personal choice to help make a difference for someone else's child. Thank you.
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