Luke and Cam Matthews lost their daughter, Stefanie, just 26 years old, on April 21, 2012. She was no ordinary child, touching the lives of anyone she encountered. Owensboro Parent was happy to welcome Cam as a special writer for this month’s issue. This is Stefanie’s story, told by a proud mother, forever changed by the life and positive spirit of her daughter.
Once upon a time there was a princess named Stefanie who was born a beautiful 6-pound, 15-ounce bundle of joy. Initially, she had no problems, or so it seemed. We wouldn’t discover her limitations until she was 15 months old, when she developed hydrocephalus, fluid on the brain that has only a few causes. In Stefanie’s case, the cause was Hurler’s Syndrome, an inherited metabolic disorder and the prognosis was very bleak. No cure. Hurler’s also comes with a variety of other issues, including diminutive stature, mental retardation, joint stiffness and bone malformation, and clouding of the corneas. But hope arrived one afternoon when she was seen by a geneticist at the health department. The same doctor had mentioned the possibility of a bone marrow transplant when he made the initial diagnosis, and I asked again about it. He felt it wouldn’t even be a possibility for her as she had no living siblings. (Her only brother had died of pneumonia as an infant.) A nurse who overheard the conversation gave me the number of another mother who knew about bone marrow transplants and might be able to connect us with a doctor.
Back at home that afternoon I called the number the nurse had given me and told our story to a doctor who would listen, and without knowing it, the adventure had begun. Stefanie had a bone marrow transplant at 21 months with the donor being her dad, who actually matched her almost perfectly, the first of many miracles for her. By the first anniversary of her bone marrow transplant, the hydrocephalic shunt was removed. Four years later right before she started kindergarten, she had her first corneal transplant for the clouding of the corneas. She wore a cute pink eye patch to school to protect it from injury or infection. The next year the other eye was repaired. More miracles.
Her limitations were always in the eyes of others. To her dad and me, she was perfect. But most of all she found her own way around every single obstacle. Stefanie hardly ever complained, but some times her shortness bothered her. I remember praying with her one night when she asked God to just make her medium. She didn’t have to be large. But Stefanie’s power came across best in a miniature body. I don’t know how many times Luke and I were told that she had us wrapped around her little fingers. But I didn’t care; nothing she asked of us was ever hard. We weren’t the only ones captivated by her. Her smile and laugh were contagious. She could and would talk to almost everyone. Once she had met you, she never forgot you. Tell her your birthday once and it was saved permanently. Everyone was equal in Stefanie’s eyes, which allowed her to sit in the lap of a principal (without asking first), play with the ears of a superintendent at a ballgame, hug the custodians every day, buddy up to the lunch ladies, console teachers through hard times, make friends with a fellow students of all walks, ignore that some folks were giants compared to her, and in general make everyone who ever met her even once fall in love with her. She gave love freely and was rewarded many times over. Every aunt and uncle and cousin was her “favorite.” One was the favorite in Utica, another Handyville, yet another in Glasgow, or Owensboro, or Orlando, or Birmingham. She was never the diplomat, so whoever was with her at the time was her favorite. Thank goodness Luke and I were with her all the time, so we had permanent favorite status. As my sister-in-law so aptly said, “To know Stefanie was to love Stefanie.”
Stefanie was never afraid to let anyone know what she needed or wanted, and we’re pretty sure she always got it. But she was neither greedy nor selfish, often giving away stuff. Stefanie once proclaimed that shopping was her life, but she was one of the most generous people I have ever known. She was always willing to share her stuff because truthfully people were her life. She loved attention and she loved to give attention. Stefanie had a deal with her Papaw that if she gave him a hug she’d always find a dollar in his pocket. She shared this little game with several uncles and great uncles and before we knew it, she was reaping dollars everywhere she went. When one great uncle died, everyone in his family made up for his absence and the missing dollar. One of Stefanie’s hobbies was making coasters with Perler beads, many of which she would design especially as a gift for someone. She was prolific, making 10 or so any given week. Eventually, we had a surplus of these, so I purchased a plastic storage box to keep them in. Whenever she needed to give a gift, she would sort through that box until she found the exact right one. Her first year at Apollo, Luke and I deposited enough money in her lunch account for a month, but two weeks later, I was told she needed more funds. When I asked where all the money had gone, I was told she was getting breakfast each day, too. That afternoon in the car, I asked her why she was getting breakfast at school when she refused to eat at home. (She was never much on breakfast.) Stefanie informed me that she was buying breakfast for some of the special needs kids in her class that wanted it. I told her we probably couldn’t afford to keep doing that, but I also told her that I loved her giving spirit. I learned to be much more giving and thoughtful by her example. She has kept the Matthews clan connected to each other with frequent phone call updates as to what is going on with each family. We’ve always joked that if you didn’t want particular news to circulate, you’d best not let Stefanie know because it would be national news in moments.
Stefanie loved everything Disney, but especially Tinker Bell. She was part princess, part spunky fairy, part child, part wise old woman. She dated the passage of the year by how close to “Disney Time” it was. She once told us that the best part of Disney was that we three were together all the time, focused on each other and nothing else. No work or household chores or other obligations to distract us from her. And we loved that, too. After one trip, we made her room and bathroom over, designed by her to express her love of Tinker Bell and the princesses. She was totally in awe of the characters at the parks, kissing their noses, cautioning them about certain behaviors, wishing them happy birthday, tickling their bellies, dancing with them, and basically, loving on them. She had favorite restaurants, too: Chef Mickeys, Garden Grill, and The Crystal Palace – though food took second place to the characters. Her favorite park was Magic Kingdom with it’s a small world and Haunted Mansion as her favorite rides.
She did NOT like to be called “honey,” “sweetheart,” or any other substitute for her name. She would declare she was “Stefanie.” In fact, at Kosair Children’s Hospital recently the doctors told her that she was a puzzle. She was 26, which meant she was an adult. Trust me, she made sure everyone understood that despite her diminutive size she was an adult. But the doctors stated that she was also tiny like a child. So they asked her to tell them what she felt she was– a child or an adult. Her response was, “I’m Stefanie.” And that summed her up perfectly.
Last November we celebrated her 24th anniversary of her bone marrow transplant, amazed at how well she had been all those years. She hardly ever caught anything worse that a little cold. Then in February she had to undergo dental surgery to repair several teeth with cavities. Unfortunately, when the dentist got in there, he discovered that because her teeth had very short roots, seven teeth had to be pulled. He was also amazed that she had a monster abscess on one tooth that would have had most adults groaning in excruciating pain. We knew Stefanie had a high tolerance for pain, acting both as her enemy and her friend. Her little body did not alert her (or her Mom and Dad) that it had had big problems going on for some time. She seemed to recover well at first as the gums healed up, eating her favorite foods– chicken and macaroni ‘n cheese. But then she quit eating and just getting her to eat a tiny meal took an hour. As she began to lose weight, we took her in to see the doctor. Except for the failure to eat, Stefanie seemed fine. Then one day her little tummy, which was always a little chubby due to the Hurler’s, ballooned out. An emergency room visit showed some issues in her liver. Before we knew it, Stefanie and I were in the back of an ambulance headed to Louisville with Luke following behind in our car. Five days later her stomach was still very swollen, a colonoscopy had uncovered a cancerous polyp (which they felt had been contained), and we were joyfully headed back home with a long list of discharge orders for us and her primary care physician.
Over Spring Break, she and I spent our time either watching Disney movies or running to various labs for one test after another. On Friday, April 6, her doctor called to tell me the test results. The CAE test for cancer cells is at 0.0 – 3.0 normally, but Stefanie’s was over 700. The doctor and I discussed when to admit her as it was Easter weekend. Since he felt nothing significant would be done until Monday, we made the decision to wait until Monday to admit her, allowing her and us to enjoy time at home with more Disney movies. When I turned to tell her what the doctor had said, I began to cry and my sweet little girl said, “This is a shock to you, Mom.” As always she was more worried about me than herself. I called Luke who immediately came home as caring for Stefanie has always been teamwork for us. We three entered the hospital on Monday, April 9, praying that the cancer would be treatable, and Stefanie even seemed a bit perkier that morning. The next three days were spent enduring one test after another with the prognosis looking bleaker with each one. Through it all, Stefanie kept that incredibly positive attitude that had characterized her all her life. When doctors, nurses, or visitors asked how she was doing, she said, “Okay” or “Fine.” One time she answered, “I don’t know,” and my heart ached. She was a little warrior, attempting without complaint to do whatever we or the doctors were asking of her in order to get better.
But none of us realized the day we entered the hospital that we’d only have two more weeks together. The worst news came on Thursday after the results of a CT scan of Stefanie’s liver showed what one doctor called a nightmare. Stage 4 metastatic cancer throughout her abdomen, including her liver, colon, and ovaries with an unknown origin. I sat at a nurse’s station listening over the phone as the doctor continued his gruesome description and praying that in spite of all I was hearing that God would perform one more miracle for a little girl who was the epitome of all God wants of each of us. The process of caring for Stefanie sped up at this point. She was scheduled for surgery early the next morning, but until the surgeon opened her up we had no idea of how extensive the procedure would be. The fluid on her belly that had prompted our concern was drained and the surgeon removed a tumor on her colon (ultimately the origin of her cancer) and re-sectioned it so that she did not have to have a colostomy. He also removed one cancerous ovary, though nothing could be done for the liver. We felt hope and our goal became to get her to Disney World one more time.
The very next day, Friday the 13th, Luke and I learned that Stefanie’s cancer had spread into the connective tissue, which is worse than in the liver, and in someone as small as she was, basically untreatable. But the hope was still there that we’d get her out of the hospital and off to Orlando. At the time she was in CCU for close monitoring, but doing very well after major surgery. Her only complaint at that moment was the catheter. She wanted it out. In fact, when she learned that it would come out Friday morning, she woke me at midnight to let me know it was Friday, and it needed to come out now. She was remarkable. By Saturday we were back upstairs, she was walking, talking, watching movies, playing with stickers, and even eating a little. Stefanie was more herself than she had been in a month. And the days progressed pretty much in that fashion with us learning we might get to go home Sunday or Monday.
Saturday, April 21 began well with Stefanie taking a walk, doing physical therapy for her legs, and drinking her favorite, Dr. Pepper. In the afternoon, she announced she wanted to sit on my lap, and I was so ready to hold her again. Most moms don’t get the opportunity to hold their adult kids in their laps, but it is still one of my fondest memories of her. Late in the evening just as a blood transfusion was almost complete, Stefanie became very agitated and uncomfortable; her speech slurred and her blood oxygen levels plummeted. Luke and I were holding her hands, reminding her over and over that we loved and would always love her. Within a few short minutes, she was gone. No fear, no pain. Except for all of us left behind whose lives she had forever changed.
Though I am a school teacher, Stefanie was my teacher every single day. She has taught me that for all my organized lists, nothing is more important than people. She treasured every day and helped me see beauty, fun, and happiness in so many little things. Her impact on people is difficult to explain; however, all of us long to be cared about, and Stefanie did just that for everyone she met. In the days since, we have heard so many Stefanie stories, and each resounds with her love and joy for life. Our home was never quiet when she was there; instead, it was a warm place full of laughter, hugs, and talk. Our home is quieter now, but the overwhelming warmth of so many Stefanie memories remains.