This past week we had another check-in with Noah’s primary doctor regarding his Localized Scleroderma. You can read my previous updates on his battle with it here; essentially it’s a disease that attacks his skin, tissue and bone structures near the skin. There hasn’t been a cure discovered yet, and while it’s a lifelong condition it typically attacks a region of the body for about eight years.
When Noah was two years old he first started showing symptoms. It took two years for doctors to finally figure out what was going on; it’s an incredibly rare condition that most don’t know to look for. The medications are powerful, and have the potential for serious side effects, which required him to have regular blood work done to keep track of how he was responding. I’ll never forget holding him down for that first round of blood work, him sobbing and struggling, and me being overwhelmed with the thought that this was going to be our routine for who knew how many years.
He’s tough, and over the months and years, through all the tests, surgeries, doctor’s appointments, procedures, and whatever else, he took it all in stride. Often times he saw the bright side of things when we would be upset. And just like the doctor predicted, after almost eight years the disease seemed to stopped progressing. Months ago we stopped giving him the medication to see if it was just the drugs keeping it at bay or if it really had run its course.
And last week the doctor told us it’s dormant! We’ll go in to see him again in a year, but more for Heather and my peace of mind than an actual need. I have to be honest, after so many years, it doesn’t totally feel real! Yes, we do still have to keep our radar up for its possible reappearance, but in the mean time, after spending the majority of his life on some seriously powerful medicines, Noah is off everything and thrilled about it!
Quite the answer to prayer!