The Starting Line

July 2010 was heaven. I was enjoying a beautiful summer with the kids in the Berkshires. Zachary learned to roller blade, Sophie learned to swim. There were hikes, bikes and countless hours treading water in the pool. It all came crashing down in August when Sophie began to complain about being tired. As the month wore on she became increasingly fatigued and was not even able to walk fifteen steps without needing to take a break. By the end of the month she was not interested in participating in any activities, could no longer dress herself, run or climb stairs. By the time September rolled around, she began to drop things, fall while walking and became so weak that she actually asked me to hold her head up for her while I washed her hair. On September 2, 2010 she was diagnosed with Juvenile Dermatomyositis (JDM) a rare auto-immune disease that affects her skin and muscles. Turns out that the rash that appeared on her leg in January 2010 was not excema after all, but rather an early sign of her disease--one that is easily missed as it looks similar to excema. Sophie was put on Oral Prednisone (steroids) right away and began to receive weekly injections of Methotrexate (a chemotherapy drug) in an effort to shut down the inflammation in her body, quiet the immune system and turn the disease around. In addition to all of the medication she was prescribed, in one week's time she also had the following tests/procedures: an MRI, several blood draws, a muscle biopsy, a swallow study, chest x-ray, pulmonology tests and a four-day stay in the hospital for IV steroid treatment--that is A LOT for a little girl (and her parents)!!! After one week on the oral prednisone, Sophie began to feel better and has been rebuilding her strength and stamina daily. She started school this week and is thrilled to be back with her friends and teachers. However, I started this blog today because I have gotten the clear impression that fighting JDM is a journey. We have a good chance of sending this disease into remission with aggressive treatment, but there is a lot of variation between patients and there is no cure. If we are lucky, we will send it into remission in the next two years and never hear from JDM again. That is our plan. To that end, after getting word from Sophie's Dr in Chicago (where we took her last week to be seen) we will be ramping up our treatment plan. Based on the labwork that was done last week, the Dr feels that the disease is 1) further along than we had originally thought and 2) still active in her muscles. As a result, she has recommended that we surgically implant a port so that we can infuse Sophie with IV steroids two times weekly. Fine with me. As far as I am concerned this is simply another way to get the medicine into her body. The worst is behind us. We already have the diagnosis. Now we have a plan. Wish us luck!