Since birth, Jessie has had a range of potentially fatal medical problems. But it wasn't until Dr. Michael Raff suggested genetic testing that doctors discovered the cause: Jessie lacks an essential enzyme in cells throughout her body.
Nine-year-old Jessie Fisher is the most popular girl in her class. She has a ready smile and lots of energy, loves basketball, R&B music and her two pet rats. Apart from the fact that she’s the size of a typical five year old, you'd never Jessie has had a life-threatening condition since birth and more medical treatments than many adults have in a lifetime.
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"Jessie didn’t have even a year left when we met Dr. Raff. He stayed on top of the drug’s release so that he could use it right away and Jessie was the first patient to receive it after it was released to market. I tell Dr. Raff all the time we owe everything to him."
- Julie Fisher (Mom)
From the time she was born, Jessie had a range of potentially fatal medical problems but it wasn’t until Dr. Michael Raff suggested genetic testing that doctors discovered the cause: Jessie lacks an essential enzyme in cells throughout her body.
Although at 20 months she was too young for a clinical trial on Enzyme Replacement Therapy (ERT), a bone marrow transplant gave her the extra years she needed until ERT was released for general use. Today, Jessie receives ERT during weekly treatments at MultiCare’s Mary Bridge Infusion Center and even though she has to miss school one day a week for her infusions, Jessie has never missed a homework assignment, loves to spend time on Facebook and in the school library, and enjoys outings with her family to the ocean, just like any other girl her age.
Diagnosed at 5 1/2 years old with acute lymphatic leukemia, Anthony was so sick he was hospitalized at Mary Bridge Children's Hospital just an hour and a half after pediatric oncologist Dr. Bill Thomas got the results of his blood work.
At age nine, Anthony Nenedjian wants to be a professional soccer player or an animal researcher. His interest in snakes is almost as great as his love of soccer (and the money pro players make) and Anthony is hoping to be accepted into his school’s gifted and talented program so he can do actual research on snakes, rather than just write reports on them.
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- "Anthony got the best care a parent could ever hope for. MultiCare has the most incredible staff, from the person who checks you in to the nurses and doctors. They really love and care about each child and allow them to be kids. [During Anthony’s treatment] Dr. Thomas would let him look under the microscope and then explain his cells. Even now, they exchange treats at our visits."
- Glenna Nenedjian (Mom)
Just a few years ago, Anthony’s plans for the future would have been unthinkable. Diagnosed at five-and-a-half years old with acute lymphatic leukemia, Anthony was so sick he was hospitalized at Mary Bridge Children's Hospital just an hour and a half after pediatric oncologist Dr. Bill Thomas got the results of his blood work.
That was the start of a more than three-year battle for his life that Anthony appears to be winning. Although he doesn’t have very fond memories of the “huge” needles that were a part of his treatment, Anthony has had an excellent response to chemotherapy and his cancer is now in remission. Anthony’s parents agreed to have him take part in the clinical trial of a new drug, in addition to standard chemotherapy, because they know the study will help kids like Anthony return to a normal life and follow their dreams of a successful and active future.
When doctors told him he needed a valve replacement, James sprang into action, doing exhaustive research on mechanical versus animal replacement valves and on where to have the surgery.
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- "The company that makes the valve has a great history and Tacoma General is a world class facility. I wanted the best care but I also thought about all the heart patients I’d seen and what I could do to help them. Taking part in a study is a way we can give back to make sure that health care isn’t stuck in the dark ages."
- James Schultz
James Schultz is bursting with energy as carpenters and other workers hammer away, readying his new guitar shop for its grand opening. For James, the store is a long-standing dream but just a year ago he barely had the energy to go to work each day. He was short of breath and tired almost all the time, the effects of a faulty heart valve he’s had since birth.
When doctors told him he needed a valve replacement, James sprang into action, doing exhaustive research on mechanical versus animal replacement valves and on where to have the surgery. He considered the Mayo and Cleveland Clinics then learned about a MultiCare study on a new mechanical valve that would eliminate the lifelong need for Coumadin. Although Coumadin has been a lifesaver for many patients, it can cause potentially fatal bleeding and patients have to be very closely monitored. Since James bleeds easily, the new mechanical valve seemed a good alternative and his research convinced him that the MultiCare team was first-rate.
Today, a year and a half after his surgery, James is doing well, leading a full life and looking forward to great success as a music-loving entrepreneur.
Karen Hill couldn't get her fingers to work properly as she was getting ready for bed one night. Then she started to slur her speech and couldn't move the left side of her body, all signs of a stroke.
Karen was one of the lucky ones; the EMT's who came to her home knew that Tacoma General Hospital was a top stroke center and made sure to take her there. But the nearly news wasn't so positive.
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- "If I hadn’t had this intervention, I probably would have spent the rest of my life paralyzed on one side. These studies are invaluable—how else will we progress in our knowledge and save lives? And you never know whose life you’re going to save. It could be a member of your family or someone who is going to change the world."
- Karen Hill
The drugs that doctors used to try to break up the blood clot that caused Karen's stroke didn't work and she was facing the possibility of major damage and disability. Fortunately, though, her medical team had another option: a new medical device they were testing that they believed could break up the clot quickly.
Karen agreed to take part in a study of the device and almost as soon as the seven-minute procedure to remove the clot was completed, her symptoms disappeared. She could move her left arm and leg and her speech returned to normal, all signs the stroke had left hardly any permanent damage. Today, the only vestige of Karen's stroke is a slight sagging on the left side of her face when she's tired. She says she's extremely fortunate to have been part of the study and is delighted that is has now been opened up nationwide to benefit other patients who might otherwise face a bleak and frightening future.
Melissa Weber didn’t have to think twice about joining a clinical trial for breast cancer patients. As a nurse, she had seen first hand the benefits of trials even though she never imagined she'd be part of one herself. All that changed, thought, after a double mastectomy and a later operation to remove cancerous tissue from her chest muscle. At that point, Weber figured that, in addition to standard chemotherapy, she wanted to try anything that might provide additional protection.
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- "When you’re going through a trial at MultiCare, you feel like you have 100 sets of eyes on you and you feel very special. [Patient coordinator] Lindy came to almost every medical visit, every infusion. She made sure I knew what was ahead and called me at home to find out how I was doing. You really do get extra care and the study gives you the confidence that you are doing everything to survive."
- Melissa Weber
In the end, Weber wound up taking part in trials of two different drugs, and 11 years after her first cancer diagnosis, she's living a vibrant life as the retired grandmother of four. She walks five miles a day with her puppy, hikes, kayaks, crochets and helps two neighbors, one with MS the other with a brain tumor, with daily tasks. Weber is also looking for volunteer work and figuring out other things to do with what she expects will be the rest of a very long life.
Kathleen is hopeful that the study she’s participating in, and others going on elsewhere, will eventually lead to a better understanding of MS and ultimately to a cure.
She jokes that she’s annoyed she can’t have Botox® or cosmetic fillers because she's taking part in a clinical trial on the safety of a new treatment for multiple sclerosis.
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"Since I never had children, I always wondered what I was here for. Now I know— I’m here to help. I feel very fortunate to be a part of a trial like this knowing that because of it, people will be able to get better treatment."
- Kathleen Douvis
Kathleen's body must remain as free as possible of foreign substances while she's in the study but she knows that's a small price to pay if it leads to more treatment options for MS patients like her.
Kathleen was the first patient to enter the study, thanks to MultiCare's Dr. John Huddlestone, principal investigator. She's tolerated the stem cell infusions well and is now being monitored closely to see how she progresses. She also receives traditional treatment under Dr. Huddlestone's careful attention. Kathleen recently retired and with her symptoms under reasonably good control, she now spends her time gardening and planning trips with her husband to Hawaii and the Panama Canal.
Kathleen is hopeful that the study she's participating in, and others going on elsewhere, will eventually lead to a better understanding of the disease and ultimately to a cure. In the meantime, in her self-described "glass half full" way, she continues to lead a full life in the belief that the next 25 years of MS research will proceed with the same leaps and bounds that the last 25 have.