When my daughter was first diagnosed I was devastated, heartbroken, lost. I was referred to a few websites as in two per my daughters doctor which can easily be located by googling rrp. They were very helpful and still are in giving advice and medical trials and advances with rrp. But not having a local support system makes it hard. You want your child to be with other children like her. But you can’t. You feel all alone and scared. You feel scared for her.
It’s been a year and we are basically at the same place we started. She has surgery about every 10-13 weeks. It’s hard to watch her go through this. Knowing I can’t help her. I can’t protect her from it happening again. We just pray that either someone will come across a sure fire cure or her body puts it into remission on it’s own.
This past December we have started her on DIM. The success looks promising but yet again it’s not 100%.
Taylor’s voice gets hoarse during these growth episodes. This past month she also caught strep and had a sinus infection. Two things someone with this condition could really do without. Her voice has never fully recovered from it. Not sure if it aggravated her condition or not. But I’m sure it didn’t help.
