The Pinkburst Guitars – Front row (left to right): Fender Custom Shop Stratocaster, Gibson Custom Shop Les Paul, PRS Custom 24. Second row: Ruokangas Duke Custom, Epiphone Jay Jay French Elitist Les Paul, Gibson Custom Shop SG, Gibson Custom Shop ES-335. Third row: Fender Custom Shop Telecaster, Martin 000-18, Gretsch G6120. Fourth row: Epiphone Thunderbird, Fender Custom Shop ’75 Jazz Bass Reissue, Gibson J-200.
Can you take us back to what started all this—Samantha’s uveitis diagnosis?
Samantha was examined at school by a very young doctor who saw something unusual and suggested we see another doctor. I live in New York City, where Dr. Brian Herschorn looked at Samantha and saw it in two seconds. He said, “You’d better sit down.” Uveitis is an autoimmune condition, and a majority of girls with juvenile rheumatoid arthritis [JRA] have uveitis. If you have JRA, you have a 75 percent chance of developing uveitis. If you have uveitis, you have a 20 percent chance of developing JRA. As a parent, you suddenly find yourself learning about something you never heard of.
How horrifying. What happened next?
With uveitis, all roads lead to Dr. Stephen Foster at MERSI, the Massachusetts Eye Research and Surgery Institution. We went to Boston and he explained the prognosis. The problem with this disease is that many doctors throw topical steroids at it, but they can cause blindness if they’re overused, because they cause cataracts. Dr. Foster’s research said that systemic chemotherapy drugs are the way to go. Because of the connection to juvenile rheumatoid arthritis, they had to do a lot of tests to ensure that Samantha had nothing else, so it was an entirely long-term thing, with constant observation and multiple doctors— including JRA specialists—to monitor her while she was on medication. The two systemic drugs are cancer drugs—Methotrexate and Remicade. They use drops to lower the inflammation immediately and systemic drugs to hold back inflammation. A certain percentage of girls between 17 and 18 go into remission, because the body’s immune system develops and the body stops it. You take your child to checkups every three, six, and nine weeks, and you pray that the cells did not come back. And then come the drops to pull them back, and how many cells and floaters are in the back of the eye, and with every step backward, your heart sinks.
Methotrexate and remicade are potentially toxic, right?
Yes, absolutely. Methotrexate did not work. Remicade is a wonderful drug with two problems. First, it costs $20,000 a dose—or $19,700 if you have insurance—and is administered intravenously in a cancer ward. Second, it lowers the immune system so much that you get sick all the time. But it holds back the inflammation. Samantha went to New York-Presbyterian Hospital for a threeyear period for the monitoring of possible juvenile rheumatoid arthritis complications that come with uveitis. But she would look around at kids with cancer and say, “They are way worse off than me.” She went through treatment, was clear for six months, and then it came back with a vengeance and she had to start on a new drug called CellCept. It’s an organ-rejection drug that she took for two or three years, and it held the inflammation back. Her vision is 20/20 now with contacts—she’s nearsighted, like her parents—but she has the beginning of cataracts because of the eye drops.
CellCept is self-administered, so the efficacy is debatable, because my daughter had to take three pills twice a day and not eat for two hours before or after taking the medication. There had to be another way. So now she is on HUMIRA, which is injected every two weeks by a doctor, and she has responded well. She’s been on it for four months and her eyes are clear. She will stay on it for two years and then wean off of it and see what happens.
The Pinkburst Amps – Front row (left to right): Orange Rocker 30, Vox AC15C1, Fender TV Twelve,
Fender ’65 Deluxe Reverb. Second row: Marshall JTM-45 Bluesbreaker reissue, Vox AC30C2,
Fender ’65 Twin Reverb reissue, Diamond Amplification Positron head and cab. Third row: Hartke
HA2500 head and 410XL cabs, Marshall JCM800 head and 1960A 4x12 cab, Marshall 1959 Super
Lead reissue head and 1960A cab, Mesa/Boogie Dual Rectifier head and 4x12 cab.
Does she still see Dr. Foster?
Dr. Foster sees her, as does Dr. C. Michael Samson, of New York Eye and Ear Infirmary, who was trained by Dr. Foster. Dr. Herschorn, Dr. Samson, and Dr. Foster are in the loop with Samantha, her mother, and me.