Friday, April 23, 2010


"And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." Philippians 4:7

This is what we feel. Truly and deeply. We are doing great. We have both had moments of sorrow. However I am shocked at how peaceful I feel. I know that this peace is from the Lord, and it is as if we can literally feel those around us holding us up with their prayers. It is beyond words at how well we are doing with what the future may hold. Our hearts and minds are being guarded from the enemy telling us to be fearful, worrisome, and anxious. So with all of our hearts thank you for bringing our family before The Father, and please continue to do so.

We have talked a little over the last few days about our options. We don't know anything as of yet, obviously. Sometimes in the beginning of finding out about plexiforms, doctors take a wait and see what happens mode. However most plexis grow at some point, and because of the location of where Abigail's is (if there is one there) I know that we are probably looking at options to hinder growth, shrink, or remove part of it. So Jason and I have been talking about the type of chemo they use, the world renown doctor who is known for removing plexis (and the fact that he is in Chicago, which is within driving distance), and what all of our options are. There are goods and bads to each one. However in talking all of these things over, and having conversations with friends here as well, I realize some of you may not know what a plexiform neurofibroma is. If you google it you will come up with a million things, some scary, some not, and a lot of medical jargon that may not make much sense. So I thought I would try to give you more information without the overload.
Plexiform neurofibromas are tumors of the peripheral nerve sheaths (also know as peripheral nerve sheath tumors or pnt). A peripheral nerve sheath is the insulating material around the nerves. They form around nerve trunks and multiple branches of nerves. They run a (slight) risk of malignancy (numbers differ from study to study). They are hard to remove because they often encompass so many nerves. Even if they are removed or partially removed regrowth is often seen at the same sight. They can penetrate neighboring organs and invade into bone.
There are quite a few studies that are going on with different drugs/chemo/treatments to find something that will stop growth and possibly shrink tumors. Riley (where Abigail goes for treatment) has participated in some of these studies.
So if she has a plexi it is a "big deal." However the timing of our fundraiser (which is May 14th) seems to be perfect. While we are waiting to find out more through her MRI I am in the process of trying to get donations to fund research for NF. It makes me feel like we don't just have to sit back and take whatever this disorder throws at us. We can do things to "fight back."
I may have plugged these before, but at the right hand side are two sights where you can go to donate. The one is a friend who is running to raise money for NF. The other is for the tea party we are hosting to raise funds in honor of Abigail. If you are interested in helping to fund research feel free to choose one of those two (it all goes to the same foundation).

Thanks for all of your love, prayers, and support,

1 comment:

  1. I got your link from the inspire website. I am Tara (birdiebabee). We have alot in common! I am a child of god AND adopting 5 children with NF1! I was curious about the plexiform being a 'big deal'. Our son has 3/4 of his leg covered in a dark brown spot (not hairy) and one doctor said "oh that could be a plexiform neurofibroma but the only way to find out is from an MRI...but still it wouldn't change anything" and left it at that. Do you, by chance, have a picture of your daughter's spot? OR I can try to get a pic of my son's leg and show you. I am highly concerned about this now. I'm sorry you are going through this....but you are not alone :-) Prayers for you all