Tuesday, August 11, 2009

A medical update

I don't even know how to start this entry. I am overwhelmed right now. I am finding that every time Abigail goes to the doctor I am waking up the night before thinking about nf. I had another dream about it last night. People kept asking me questions and I had to give all these answers about what it is and what it can do. Once again a horrible reminder of all the things that could go wrong for our daughter. I was awake for about an hour in the middle of the night laying and thinking about nf.

So our doctors appointment today was "routine." It was with our ent for a post-op check of her tubes in her ears. There wasn't any true reason to be stressed about it!! However I decided since he specializes in throats too I would mention something I noticed on her throat. I had mentioned it to our doctor when I took Abigail in for strep throat. She thought it was a swollen lymph node. I had noticed it about three weeks before that. However after she finished her antibiotic it was still there. So I thought it probably is still just a lymph node but I'll ask.

So holding my daughter sort of upside down through her tears I showed the doctor. He felt it for a few minutes and pondered before he spoke. It could be two things. He explained the first one. Then sort of said what had been in the back of my mind since I noticed it. "It feels like a fibroma. When she has her mri they should be able to tell you for sure what it is."

I held it together as we walked to the car. Not very well, but I held it together. I drove home, although I don't really remember driving home. I feed Abigail a toasted cheese sandwich and peas...because she loves them and I wanted her to have something she loved today. I layed her down for her nap and walked downstairs at which point I lost it.

Jason called at that moment so I told him what Dr. Phillipsen had said. He didn't really say anything else. We just stayed on the phone for a minute and then he said I have to go I'm at my next job.

Now it is still possible that it is not a tumor so I am trying to remember that. None the less I feel similar to what I did the day we found out about the nf. Unsure of how to deal with this, wanting answers NOW and deciding to watch scrubs and drink a beer. This isn't how we deal with everything, it just helps to bring laughter at the end of a hard day. It also is a nice way to space out the discussion of new things.

This post was mostly as an update so I don't have any real wit or encouragement. Please continue to pray for Abigail, us, and the doctors who will be caring for her.

With heavy hearts,


  1. I am crying reading this and my thoughts and prayers are with you and your little girl. I am very sorry y'all our having to go through this. I know this will probably happen to us someday too.

  2. I know- its so hard. Julia has neurofibromas on her toes. It's just too much, I'm sorry to.

  3. Came across your blog while doing a search for NF. Are you in the Muncie area? (I am guessing by your blog.)

    I know several other folks in the central Indiana area who have kids with NF and thought you might be interested in attending some of the Indy Chapter events or even get involved with the NF Endurance Team. http://www.ctf.org/endurance (We do the Indy Mini every year.) I do a lot of social media communications for the Endurance Team. Feel free to shoot me a message anytime if you are interested.

    I now work in the Brown County area, and am finishing my degree from Ball State this Fall. My blog is http://fallingfaceforward.blogspot.com and you can find the blogs of many people running with the NF Endurance Team at http://nfenduranceteam.blogspot.com

    Keep up hope. We will find a cure!

  4. I know the fear of NF sends most down a dark and scary road....but honey---you are not alone. Your precious daughter is so lucky to have you. Its okay to break down, and get mad as hell at this NF....Just never ever give up hope.


  5. Hang in there, friend, and keep on clinging to Jesus.