It’s been a while since I have posted an update on Noah and his battle with Localized Scleroderma. You can read some of the past updates here. The short recap is that he originally began showing symptoms of Scleroderma attacking the skin on his face around two years old, but doctors were unable to discover the diagnosis until he was four years old. He is nine years old now, has had numerous surgical procedures, powerful medications, regular blood work, multiple biopsies, and more. He is a TOUGH kid who has gone through a lot!
This past week we had his latest appointment with his primary doctor. It was good news. Essentially, Localized Scleroderma tends to attack a region of the body for around eight years. He will have it for life – there is no cure, but it’s attacks, or flare-ups, will be unpredictable and sporadic. The one we have been fighting has been on his face, and the goal of the medications was simply to halt the progress and hold it at bay until it had run its course, which the doctor is hopeful is this year. It appears to have stopped its activity; perhaps because the medicine is doing really well, perhaps because the attack is wrapping up. Either way, around Christmas the goal is to begin easing him off the medication with the hope that it will continue to be inactive! This is GOOD news.
It doesn’t mean it’s over, however. Noah will continue to have regular doctor’s appointments – both to monitor where it has been active to make sure it is truly done attacking his face, as well as to monitor potential flare-ups elsewhere on his body, at which point another eight year struggle of medications, blood work, biopsies would begin again. When he is older, as well, he will be able to have plastic surgery to undo the scarring Scleroderma has left on his face.
Ultimately, though, this is exciting. When we were told so many years ago that this was going to be an eight year battle most likely, that felt so far off in the future. Pinning him down for his first round of blood work was a nightmare and I remember thinking with horror that this was going to be our lives every few weeks for endless years. Noah quickly learned to handle the challenges, often times doing far better than kids much older than him at the hospital. He is resilient! And like us, he is excited at the thought that we are only months away from perhaps ending the medication and blood work!