Jessica's Story - One Month Later

5:51 PM, Jun 1, 2008   |    comments
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It's exactly one month since the surgery that resulted in Jessica becoming deaf and she is back at the University of Michigan Hospital, but this time, she's anxiously waiting to see the hearing specialist. Jessica's mom Cindy Stone says Jessica is okay with whatever the results of the hearing test are. “She sort of made the stand I'm not going to make neurofibromatosis my life and whatever we get out of today is going to be great." It seems the one thing that's remained unchanged is Jessica's positive attitude and her sense of humor as she describes what the last month has been like living in silence. “I'm really getting used to being deaf. I blow dry my hair, I don't have to listen to the racket. I don't have to listen to the kid next door play the trumpet. Its good." And while the sign language is coming along, it's slower than what Jessica's mom Cindy would like. "When there are more than two people in the room and conversations take off, then I feel really bad because she's not really a part of it and I'm working on that." Soon the wait is over and Jessica is ready for the baseline hearing test that will help determine if there is hope for cochlear implants. The lab technician at the University of Michigan Otolaryngology Department gives her some last minute instructions. ”Faint or quiet or soft - if they sound distant, just go ahead and press it." The tone sounds but Jessica doesn't hear it. Despite what seems to be disappointing news, she explains that she felt some sensations. The lab technician explains that's a positive sign. "For some of the lower frequency sounds, you get more of a sensation. More so than an auditory, it was more or less the vibration that she was feeling." And once again there is a glimmer of hope. Next stop, a consultation with Dr. Hussam El-Kashlan an Otolaryngologist at the University of Michigan. Dr. El-Kashlan uses a computer to explain the next test he would like to perform on Jessica. "They tried to preserve the hearing and they had what we call a 'wave one' so there might be something that we can still stimulate, so we will try that first." The test involves inserting a needle into Jessica's cochlear nerve and stimulating it with an electrical current with the hopes that she can hear tones. It's a test that unfortunately Dr. El-Kashlan says will have to be during her next visit. "This is a wonderful result. I'm very happy to see her doing as well as she is." So for a few more weeks there is hope that Jessica may be able to hear again someday through the use of cochlear implants. Jessica's next hearing test has yet to be scheduled and we will continue to follow her story and bring you an update with hopes that she will be a candidate for cochlear implants. Scroll on down for part one of Jessica's Story - Click here to watch the previous story

Neurofibromatosis is a genetic disorder that affects our children and young adults causing them to grow tumors throughout their body and it's causing a Muskegon woman to make a life and death decision. Also known as NF, this genetic disorder affects the nervous system and causes tumors to grow on nerve cells . For most, it means a lifetime of surgeries to remove the ones that are life-threatening. NINDS Neurofibromatosis Information Page 22-year-old Jessica Stone has had over 20 surgeries to remove those tumors. Most of them have done little more than leave behind an unwanted scar. But now, there's one growing on her brain stem and it's forcing her to make a choice most of us could never imagine. "Jessica's always been the fun one," Jessica's mom Cindy Stone chuckles as she describes her daughter, "but she's always been slightly an odd duck. That's how we refer to her in the family and it's with love." Cindy says Jessica is the one who's positive attitude can pull the family through just about any crisis. "Things were always just a little bit different and a little bit harder for her and then once she got diagnosed we thought, this is all making sense." says Cindy. Jessica was diagnosed at 15 with neurofibromatosis. “It was really a kick in the gut," says Jessica. After all, your teenage years are supposed to be spent thinking about boys and dreaming of the future. Instead Jessica was having surgery to remove tumors from her head, her hand, her arm, her side, her esophagus; and those are just the ones that had to come out. Jessica understands she has an incurable disease. "A lot of the tumors you just let them set, if they're not doing any harm to you." Doctors think Jessica still has about 20 tumors in her body, but right now one is forcing her to make a life-changing decision. The cause is a large tumor growing on Jessica's brain stem. "They said if I wait, it will be more of a life and death situation. And I don't want to go there, so let's just do it." says Jessica bravely. But this decision will cost Jessica her hearing. "Someday, I won't be able to listen to my Ipod or go to the movies without closed captioning or anything like that." Jessica chronicled her last 30 days with hearing in a video blog. Click here to watch her first entry, 30 days out from her surgery. And that day is almost here It's the final day before a surgery that will silence Jessica's world. "I'll still remember the sounds," she says. "My dog barking or snoring or whining or whatever he does, just little noises like that. Music is like the hugest thing to me." Jessica has been chronicling her final moments:
  • one last trip to the beach ,
  • one final video blog and playing of the bongos,
  • one last smoothie where she can hear the blender and
    one final playlist for her Ipod, before she's deaf. "I know there will be a lot of crying." But Jessica, the can-do kid, is trying to embrace her soon-to-be, new way of life. She's learned to sign the words to her favorite song and she's chosen it as the last one she'll ever hear. And for Jessica's mom Cindy, the process is almost just as painful. "For us as parents we can't do one thing about it. We just have to sit here and watch it happen." Jessica tries to give one more positive speech before leaving for the hospital, "It will never be okay, but we're going to make it work for us and for our family.” 6:00am April 14, 2008 - Just hours remain before Jessica goes completely deaf Jessica and her mom are waiting in the surgery prep area at the University of Michigan Hospital in Ann Arbor. “I think we all are running on about 2 hours sleep," Cindy says they stayed up most of the night talking and laughing and savoring every last sound. As final minutes tick by, Jessica listens to her Ipod but the stress of the morning is already showing as tears begin to stream down her cheeks and the reality of losing her hearing begins to set in. The surgery is expected to take 12 to 18 hours and Jessica's family gathers to wish her well and she hears her mother tell her she loves her one last time. And with Ipod in hand she listens to her final song and heads into surgery. Click here to watch Jessica sign "All We Are" the night before her surgery. Both the size and the location of Jessica's tumor greatly concern University of Michigan neurosurgeon Dr. Gregory Thompson. “Sometimes when you take out these very large tumors and there's any swelling, it can close off that pathway where the tumor was and the fluid can accumulate inside the brain and cause pressure and be very dangerous." It takes nearly an hour before he and his team are able to safely expose Jessica's brain stem. They've passed one hurdle. "The tumor was about the size of a lemon and it had pushed it over a good two centimeters." Dr. Thompson says despite it's size, the tumor is not causing significant brain pressure. Now comes the long process of removing the tumor piece by piece. Exhausted, Jessica's family continues to wait for any news and her mom Cindy wonders what the future holds. “It's just that what if, you know? What is her quality going to be now that she's made her decision? Now we're going to live with it and there's no going back." So they move forward, practicing their new language. Finally after nearly 13 hours, Dr. Thompson arrives with unbelievable news. "You know, we got to the end and she still had a hearing wave. It would be near miraculous. Our hearing people checked it over and over and I've never seen anything like it." Could it be that Dr. Thompson and his team have done the impossible and saved some of Jessica's hearing? "She's got about a 50% amplitude of what she had," says Dr. Thompson. Still groggy Jessica is transported to ICU. Her mom, anxious, and looking for any sign that her daughter can hear. "Tired?" she asks. But Jessica is unresponsive. Dr. Thompson says Jessica will need a hearing test to determine whether any hearing can be restored. The day has been an emotional rollercoaster ride for Jessica's family. "I was a little disappointed. I was kind of hoping she might do something, but she's not going to sit up and say, 'hey mom, how are you?', but we'll wait. Time will tell more." The next day It's Jessica's first conversation without sound, using sign language to ask if she's in pain and to tell her that she looks good. Jessica can't hear, but hope still remains for a miracle. One week later, Jessica's recovery is proving to be a slow process. "You'd think being deaf, it would be quiet, but like I can't get a constant thought in, and like I'm constantly thinking about stuff," she says. Jessica's says she's already had her first reality check. "Like to go in a bath, it was so weird to not hear water and to not hear all these things." Like her dog Toby on the porch whining because he wants to be near her. It's tough for Jessica's mom to watch her daughter go through this process of adaptation. "We have a deaf daughter and we're gonna deal with that and we're gonna live like that." Click here to watch more of Jessica's recovery. From here forward, there will always be two Jessica's; the one that could hear and the one who's deaf, but combined they have more courage than any of us will ever know.
    Sunday night at 11pm, we'll update you on Jessica's condition as she has had extensive hearing tests and may be a candidate for cochlear implants. There is a local support group for people with neurofibromatosis. They can be contacted at 616-451-3699 or .

    Val Lego

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