Ten days after our beautiful plump baby girl was born in 1976, the pink tinge around her umbilicus deepened to a mean crimson. Her pediatrician thought I was an over-anxious new mother as I kept calling his office explaining that the skin around my baby’s belly button looked irritated. He finally agreed to see her late on a Friday afternoon. As he peered at her belly, his face grew intense and angry, “this baby is sick.” He scolded. “You’ve got to get her to the hospital. I’ll call ahead. She needs treatment immediately.”
I drove to the hospital in a daze, wishing there was somewhere better to go, someplace beautiful and peaceful where she might heal without medical treatment. They were waiting for us when we arrived and whisked us right into a treatment room. I couldn’t believe what I was hearing as the resident conferred with a physician outside our door. “It’s the worst umbilicus I’ve ever seen,” he said. They insisted on hooking her up to an IV and pumping high octane antibiotics into her veins for two weeks.
My husband and I had both been blessed with good health; we had never seen the inside of a hospital. When we finally took our baby home, we believed the worst experience of our life was behind us. We were wrong. More infections followed, more hospitalizations and more puzzled doctors. Finally when Leta was eighteen months old they gave her condition a name: severe congenital agranuelcytosis or lifelong neutropenia. I held Leta in my arms while her hematologist explained how rare her disease was. I finally asked him, “you call this lifelong neutropenia, does that mean she can have a long life?” He was silent. “How long? Do you think she’ll live past her toddler years?”
He shook his head and said, “take your baby home and enjoy her while you can.”
Beating one terrible infection after another, Leta surprised her doctors and defied the odds. Her mighty spirit and her inexhaustible love of life always prevailed. She excelled in school despite the endless infections that often put her in the hospital, sometimes for months, Leta had an irrepressible instinct for celebration. She never missed a chance to make a “party” out of the simplest event or milestone. She loved music, art, drama and writing. She got a big kick out of changing the color of her hair–one autumn after she died it orange, she told her friends she did it as a safety precaution since it was hunting season in our town. Leta left behind dozens of journals filled with her thoughts about life, and wild collages that reflected her dreams and struggles.
When Leta was twelve, her life was transformed by an experimental drug called GCSF, a true miracle drug. For the first time ever, her bloodstream teamed with neutrophils, the microscopic warriors that ingest and destroy the ever-present bacterial predators that once overwhelmed her body and threatened her life. She endured bone marrow aspirations and frequent blood draws during the testing phase of the GCSF. Eventually her hematologist, Dr. Boxer, prescribed two injections a day and Amgen offered the drug at no fee to her and all participants of the study.
The quality of Leta’s life improved dramatically and she was able to join in activities more fully. For the first time in her life she was considered “normal.” During the teen years Leta struggled to find her identity somewhere between the world of the sick and the world of the healthy bodied. “Mom, I don’t really belong in either world. I’m glad I have the medicine, but I’m tethered to it. My friends don’t understand.” In Leta’s second year of college when she was twenty, we got the tragic news that she had “converted” to leukemia–a bone marrow transplant was her only hope. She approached this daunting reality with a big heart and deep resolve–she would endure whatever might lie ahead in the hopes of getting a new life, free of drugs and free of sickness.
She braved the chemo and its painful consequences for four harrowing months, but her body had been through too much. The doctors gave their all to try and save her, but it was not to be. On August 25th doctors, friends and family gathered at her bedside, surrounding her in love as they said their goodbyes. I’m sure it’s the hardest thing I will ever do, saying goodbye to Leta. The love she brought to us remains strong and continues to be a force for good and joy in our lives. She is deeply missed.
She touched many people in her short life. Below are some quotes from Leta and from those who loved her.
When she was five, she drew a picture of death, a stick-figure sitting up in bed with arms outstretched. When I asked her to explain, she said, “Mom, life’s the dream; when you die you wake up.” Several times she told me, “Mom, I’m not afraid to die. I’m just afraid of being forgotten.”
Once she was sitting on the sofa, recovering from a terrible lesion and her father came home complaining about his errands, irritated at how they hadn’t gone according to his plans. “Dad, you should be glad you’re able to go on those errands.” She scolded. “Most of life is running errands, you should enjoy them.”
Words about Leta from her friends and family:
August 25, 2007 marked the ten year anniversary of her passing. I sent a request out to family and friends asking for their thoughts and memories of Leta. Here are the responses.
From her father:
I got to witness her birth, a miracle to experience, regardless of the times it is said. A new human to join the world from a strong and beautiful mother. I got to hold her hand as she died, an unusual experience for a father, the only time I experienced what must be called a state of grace. For twenty one years I got to be her father. I only saw her frightened a few times in all those years. I saw her take dismal days and uncertain people and turn them into happy memorable events. I’ve never known anyone who was so hell bent on enjoying life regardless of the terrors it threw at her, from the day she was born until the day she died, laughter, compassion and joy were her goal. She saved my life, she still does, everyday, it is simple and she knew it. Her daughter to father advice, “You had better learn how to have fun Dad.” She’s right of course, she usually was and her laughter really does still rock.
Leta’s sweetness, her courage, her inner and her outer beauty, her humor and her strength blessed and enriched the lives of all who knew her. How could anyone not miss all that? “What I do is me, for that I came”.
I cannot think of a more worthy or more difficult subject. When I first got to know Leta person to person, she could only hold my finger and not my hand. We became cousin-friends quickly. I came to know her as a close friend and relative with the exciting sense that our relationship was growing and on the rise. After overcoming a big age gap, we had reached an age where we really related to and needed each other. It was very comfortable. I do not feel at all uncomfortable in saying that I feel a very personal loss that I could no longer experience that relationship and nurture it and benefit from knowing her. I empathize with you and Louis and Skyler primarily for the tragic loss of Leta, but in a very strong second place, I miss her for the relationship we had together, and what we were building. Sometimes, I just cannot believe that she is not here to share in the MANY fantastic times Justin, Skyler and I have shared over the years. As to anecdotes and memories, when she flew to LA in 1989 (or so), Franny and I picked Leta up at the airport. She was about 11, and was wearing this cute purple back pack, girly hat and cute little kid stuff. She greeted us, and it was very fun. She said, “I am starving, let’s just pick up a burger.” Franny and I thought it was late, and that she was too young and small to munch a burger late at night. But, Leta was so adult acting, so matter of fact, with the colloquial “let’s grab a burger,” that we thought, well the kid must be one heck of a little burger eater. We bought a large cheeseburger, and went home. Leta fell asleep without even unwrapping the burger. It was so cute, big girl hit LA and wanted a burger like a rock star, then fell asleep without a bite. She was just that type of kid, if she said she needed a burger, she needed a burger. Who were we mere adults to question the wisdom?
Lots of Love, Holden
Leta–Her hair was brown, she chose blue. She could have frowned, she chose to laugh. She could have been careful, she liked risk. She risked, laughed, explored, tried, and had a big life that matched her big imagination. And she showed us the silliness of our careful lives.
I have always been touched by Leta’s free spirit and attitude. She was a proud and articulate individual. I love her quote from Shakespeare, “Be there no time delays at dangerous ends”. I also remember how brave and courageous Leta was as she underwent multiple procedures and intensive chemotherapy and with all that, what a joy Leta was when feeling well.
Much love, Larry Boxer
Inquisitive, laughter, loyalty, beautiful, unique, character, best friend forever, laughed with her, loved her, miss her. How can I forget? It hadn’t been but a month or so that I had moved to Michigan. We were in the 7th grade. Leta and I were comfortable together immediately. She was so welcoming and had a trusting quality about her. Leta was so small and cute. She smiled all the time and made me laugh so easily. It was like we created our own little world. I know most kids thought we were so out there and crazy…..and we were. We didn’t care though. We just had so much fun. I remember clearly her coming up to me and flat out asking,” Do you want to be best friends?” I thought what a silly way to go about it and how cool and different for her to ask me. Of course I agreed into what was to become the most amazing friendship of my life to this day. We were soul mates. We were inseparable. Leta touched my heart with the best days of my life and the single most challenging day of my life. I will never forget. I will always remember. Everyday she is with me.
Leta had an electricity about her–Everyone knew there was something special about this girl. She was bold and utterly hilarious. She was my best friend and I will never forget her.
Leta seemed to understand, especially in her final years, that her parents’ generation sometimes needs to be taught to be young again, so one afternoon she gently and carefully told me what her music was about, what she and her friends liked to do, what was going on in her world. I was very grateful for that privilege. A chance to see the French Riviera, or go to Carnival in Rio or see whales breach in Alaska, these things may come and go, but when the young let you in for a look and a listen, count your blessings. It feels like grace.
My most vivid memory of Leta is the spectacular time she spent with us when she was about ten. She flew to California and graced us with her joyous being for about a week. Our whole family had such a good time. We played and played and the kids giggled and giggled. I was so aware of protecting her, yet at one moment while having a water fight in the hot tub the lid came crashing down on her head. I was stunned. She just smiled and took it with enormous aplomb…”No problem!” She would not let herself be thought of as fragile. Another memory was driving across the Golden Gate with the top down and Paul Simon blasting, “Diamonds on the Soles of Her Shoes”……Leta was singing and laughing and so totally 100% into the moment…the precious moment…. that it was healing to share it with her. I will never forget it or her. What a beautiful child…beautiful human. What a blessing to share her spirit for even such a short time. There truly were diamonds on the souls of her shoes.
Leta we love you.
Nancy, Roger and Naomi
Little Leta. That’s how I remember her best, not having known her well as she progressed to young adulthood. I see her now in my mind: a tiny waif wrapped in a white gown too big for her with dark hair askew and tubes dangling from her arms. Incredibly, she walks ever so gaily down the hospital hall toward me, dragging the metal pole to which her medicine bag is attached. She’s smiling, seemingly happy – no needles sticking her or annoying pain at that very moment. The little princess, determined and resilient, as she continues the task at hand and what will become a natural part of her life. In command of her surroundings, but sadly not of her disease. I wish I would have taken the time to know her better as she grew – this old soul in a young girl’s body. It’s my loss. As parents, I hope with each passing year that a quiet peace grows in your heart knowing you did the very best you could for her short life…… your love sustained her for the time she was here and continues eternal.
I had a dream that I had just moved to NYC and Leta was helping to move me in. We were sitting in my new apartment talking about funny things that happened when we were younger. She looked like she did right before she went into the hospital, with her hair blonde and shorter. It was funny because I woke up and just felt like you do when you’ve seen a friend you haven’t seen in a long time. Strange. I was thinking about the time when Leta and I wrote, A Day in the Life of John and Chloey Chia, about the two kids addicted to Ovaltine and it reminded me of how we would sneak upstairs and eat that stuff out of the jar. There were times when we would put it in baggies and walk up to the gazebo in town and eat it like addicts. We would eat it raw by the spoonful. It gives me a stomachache just thinking about it. I guess what I remember best about Leta was her sense of adventure and creativity. We could sit around for hours and make up stories and laugh and laugh. My sisters hated us. We would wake them up at night laughing about our nanny named Tizza that had deer legs instead of normal ones. We even used that for our campaign slogan at school, The New Tizza Deal. We put up signs all over school that said that and no one knew what it even meant, but they elected me anyway!