Tuesday, April 20, 2010

What we found out at the neurologist.

There are a few words people don't want in the same sentence with their small children. Things like cancer, tumor, chemo, and death come to mind. Our wonderful little beings should not have to experience any of these things. I as a mother don't want to experience these things.
But since Abigail's body is programmed to grow tumors, I know that our little bug's name will be linked to the the possibility of these things. I have written and spoke sentences with them all in there.
So today was Abigail's neurologist appointment. We had a wonderful lunch with a friend who works at Riley. We played in the atrium and looked at all the stuffed animals. We waved bye bye to the water over and over because it still wasn't there today. She then played in the waiting room in the neurology area.
I never felt the sense of doom I did last time. I wasn't anxious or scatter brained. I felt like I had it together and was ready to ask questions and hear what he had to say. And even now I think I did a pretty good job with all of it.
As I mentioned a few post back when I told you about Abigail's pain, she has a suspicious spot on her back. I haven't played with it much because frankly, I didn't want to know. I didn't want to spend two months freaking out over nothing. And even if it was something spending two months worrying isn't helpful either.
So it was one of the first things I brought up today. The response was not unexpected, but still made me want to run from the room. He played with her back a little, tickled her and then said he thought there was a plexiform neurofibroma there. He did some more in the exam and talked about a few other things.
However when he explained the tumor (he did it treating me like I knew about things already, which I did) he mentioned chemo. I was pretty much okay until then. The idea of my little girl's body being pumped full of those chemicals was a little too much.
Abigail fell asleep quickly once we headed home. I cried off and on the whole way home. I know all the statistics. I also know in reality that we don't actually know for sure she has anything, and we won't until after her MRI in May. I watched her in the rear view mirror hugging her monkey and sucking her thumby and wondering what lies ahead for her.
I know some of you are probably wondering why we didn't call you, but frankly having to tell Jason, and calling family was as much as I could do. Feel free to pray for us a whole bunch, and we will update you in midMay when we find out for sure.

Leaning on the everlasting arms,


  1. gosh. there are no words. i'm so sorry. i hate how the world breaks on our little ones. how the consequences of a fallen world are often illnesses.

  2. We will pray for Abigail (and you and Jason). God Bless!


  3. I prayed for you all day. I was really hoping that you would post about the appointment quickly. Thank you for sharing your heart with us.

    I will keep praying for all of you. I know that it doesn't feel good standing so close to the fire, but there is sweetness on the other side of it. You will get there, and God will be holding you all the way.

    I love you, girlie!

  4. i too have a child with NF1 and I blog about it and worry all the time. WHere do you live? state? My son is 4. I am sorry and feel for your child and you