Wednesday, March 25, 2009


One month after diagnosis, we were at UCSF to see the pediatric dermatologist and rheumatologist. After complete examinations by both doctors, their recommendations were the same: Chemotherapy. I heard the word and inside I was freaking out. He's just 7! The doctors talked about the side effects...liver damage, canker sores, hair loss... but this kind of chemotherapy, methotrexate, is prescribed for arthritis, not cancer. (whew!) The second part of the treatment would be "pulse steroid infusions". Basically, we would take Hank to the hospital 3 days in a row, every month, where he would have steroids pumped into his body for one hour. The first round was for 3 months, with the possibility of another 3 months. The methotrexate is a 2 year protocol.

We came home in a daze and started our research on both treatments. We found that methotrexate is used a lot for diseases of "unknown origin". And a study done on 32 kids with Scleroderma or PRS had a 94% success rate of halting the atrophy. That was great! We were excited to have a treatment...any treatment!! But at the same time, the thought of putting steroids in such a little body and knowing it could affect his growth, really upset us.

My sister, Barbara, contacted her brother-in-law Bill, who works in the health industry. Through his experiences, research and contacts, we were able to get first-hand accounts of people who had used methotrexate. The opinions were across the board. Some got violently ill from it and had severe gastrointestinal problems along with terrible canker sores in the mouth, and others had no reaction at all.
The steroids were a whole other issue. The concoction prescribed was a combination of prednisone and corticosteroids. Some people had weight gains and swollen "moon" faces, some had the atrophy come back every time they quit the steroids, and still others had not problems at all. Of course after every treatment tests had to be run on everyone to make sure their body was still functioning properly...Blood counts, liver enzymes, etc.

We were torn. Through the Romberg Connection I was able to email and even talk on the phone with a few parents who's children were using the same protocol. They were all having success with minimum side-effects. We were so encouraged! But then I would look at Hank...small for his age, hadn't done much growing in about 2 years, and weighing just 46 pounds. Was this the right thing for us? It just didn't feel right, but what else was there? We didn't have any other options. The last thing we wanted was for Hank to come to us, years from now and say, "Why didn't you DO anything?" We couldn't do nothing! We HAD to do something...

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