What we (don’t) know…

Havyn did well at chemo today. This was her last infusion of this round so she gets a two week break! The MRI she had yesterday showed some good news and some news that we are still not sure about. The good news is that her optic nerve tumor is stable and not growing meaning the chemo is still working. The other news is that she has more NF related spots in her brain and spine.

Unfortunately her oncologist in Louisville hadn’t gotten the MRI before we got there today. They have everything now so we hope to know more within the next week. We’ve also sent a copy to her team in St. Louis and they will review everything next week. I don’t think there’s anything too scary, but we know that she has some sort of lesion on her hypothalamus which is near the pituitary gland in the brain. Not necessarily a big deal, as it could just be another NF-1 spot, but we hope to get more clarity after the docs have time to review things.

There are also some neurofibromas possibly developing in her brachial plexus. I’m not sure what that is entirely. It sounds like a wrestling move but apparently it’s something that connects your spine, lungs and shoulder or something. I’ll have to learn more on that. Anyway, it may not be too concerning because these small little non cancerous tumors are what she can look forward to all over her body throughout her life. While we know she’ll probably develop them, it makes everything seem that much more real when they find them. Back in March while in St. Louis, Dr. Gutmann confirmed our fear that a small bump on her leg is likely a small neurofibroma forming. These tumors are typically not cancerous but they can be painful and itchy. She’ll probably have to have some more imaging of the brachial plexus to get a better look at what’s going on.

Thanks for your love and prayers!