Tuesday, March 22, 2011

The future of plexiform neurofibromas.

The last few days have had me close to calling and cancelling the surgery just because I will never have clear cut answers about what is best. But instead I do my best to run forward and not listen to the voices around who are questioning, questioning, questioning. I really just want what is best for my daughter. I want to know I have done all that I can to give her a fair shot at the future.
I think one of the hardest things for others is that right now if you look at Abigail you can't tell. I can tell, Jason can tell, her physcial therapist and doctors can tell, but you couldn't. And for that reason people question what we are doing. But what they are even more blind to is the future. The disorder, the tumor, the hemihpertophy, they are all progressive.
They will all likely continue down a path that leads towards the destruction of my daughter's ability to walk, dance, climb, and be a kid. So I have decided to include a picture for you all. It is a picture of what the future could hold for Abigail if we don't do anything about her tumor. It is a picture that reminds me why even with all the questions and doubts, we are doing the right thing. Because although some people's tumors don't grow quite this big, they can. And there is no way to know if this would be the case for Abigail or not. If I waited to see it could be too late to do anything about it. So I'm going to do what I can to prevent this for my daughter.

Thanks to all of you who are praying, giving, and enouraging us along this walk. We are doing our best to be open, and answer all the questions and e-mails we are getting. I am hoping this post will help people to understand why it is so important for us to do things now.


  1. I having followed you for very long but I know you are doing the right thing.

    I know the frusrtration you feel about people not knowing so not understanding and judging because they don't know and can't tell.

    I have few visable tumors on the parts of my body that I choose to show to the public, and most are internal. Because I "look" fine people just don't understand why I don't feel fine most of the time. It is really hard.

    you are her mama and papa, you know what is best, you are doing the right thing.

  2. I worry about Joey all the time. He has a plexi on his neck, back of his head........So many things can go wrong. We debulked somewhere around 9 weeks old.....I don't really remember. It's grown back but as of about 8 months ago it has only grown at the same rate of his growth...as soon as the plexi outgrows him, we'll be making some big decisions.

  3. Andrea don't let anyone put doubt in your head. You are an amazing mom, you know exactly whats right for sweet Abigail. It's easy to judge and have an opinion when you don't have to live it on a daily basis. Always praying for you guys!!

  4. I honestly don't know what is right for your family and your daughter since I don't know you personally, and I've arrived in the middle of this story (and at a very crucial point). But no matter what you decide, I do understand how hard those choices are to make.

    Only you know what the right thing is, and it's not up to anyone else. I wish you luck, and pray it all goes well.

  5. You are the mom and Jason is the dad. God and you two make the decisions for Abigail. Please give her a huge hug from us and ask her to give you one from us also!!!!

  6. Nothing good comes out of waiting and seeing with a progressive condition like NF1. Things only get more complicated and less favorable to operate. Good luck guys!

    The Holloways