Thursday, April 14, 2011


I'm going to do my best to explain what we know...or really more of what we don't know. We met with the surgeon yesterday morning before leaving Chicago. He told us that the pathology came back puzzling. The tumor was benign. It was connected to a nerve (like NF tumors) had overlying hyperpigmentation like plexiform and was 'causing' hemihypertrophy like a plexi. Turns out the tumor was NOT an NF tumor. It was a mastocytoma (mast cell tumor). What does this mean? Well, first of all it means that we are thankful that it was benign. And we are glad that it flared up and we got it taken out because there are some more things that need to be hashed out. Last summer we saw a dermatologist because of the possibility of Abigail having mastocytosis, or some other mast cell disorder. The dermatologist was not helpful. She was literally so excited about the NF that she diagnosed her with it again and laughed when I asked about the possible masto. So I never pursued it anymore because it hasn't been an issue. But with this tumor it is a very real issue, and pretty likely. It means that if she does in fact have a mast cell disorder, mast cells could build up in different parts of her body causing everything from dermal issues to internal issues. She will need to have some internal organs scanned to make certain that they are not abnormally large (due to mast cell build up). Interesting side note, another common place for mast cells to build up? Lymph nodes. What do all of Abigail's MRI's keep coming back with? Slightly enlarged lymph nodes in her groin, and even more enlarged lymph nodes in her neck. The second thing it means is that the hemiypertrophy was not caused by the tumor. However, hemihypertrophy can be caused by a few other things. Some of them are genetic disorders that we already know that Abigail does not have. A few others are a Wilm's tumor (on the kidneys) an adrenal gland tumor, and a few other types of tumors. Sometimes the hemihypertrophy is just that. Kids with it end up getting blood work and ultrasounds every few months to monitor things. It's odd having a world renown surgeon tell you that he is 'puzzled' by your child, and so are the doctors who did the pathology. We are feeling pretty thankful that we already have her yearly NF appointment next week and an MRI where they can go ahead and check out those internal organs. Those things have been scheduled for a little while. This tumor mimicked an NF plexiform in every way possible, and between that and the rapid growth we were seeing we felt like it had to come out immediately. We do not feel like it is some sort of crazy coincidence. Because despite the fact that we sit here now with more questions than answers, we are able to rest in the fact that God might just have been trying to bring something else to light. So we are asking you to join us in praying specifically that God would make whatever is going on in our little girls body known. That the things that feel like they are in the darkness would be brought to light, and we would be able to take the steps forward to get Abigail what she needs. And I really will post some pictures from the fun things we did in Chicago soon!!! 'Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be the glory in the church, and in Christ Jesus, throughout all generations forever and ever! Amen!' Ephesians 3:20-21 Resting in the one who is able to do immeasurably more than we can ask or imagine,


  1. A couple of things that I haven't heard of but should be on the look out for. Lots of prayers for answers and healing.

  2. oh my goodness you all have been through so much and have handled it all with such grace!

    Keeping the prayers coming for Miss Abigail. i want everything good for her.

    You are such an amazing family. God bless!!

  3. Wow I thought my daughter was the only one with Mastocytosis and Beckwith Weidemann Syndrome your blog caught my attention!!! Her doctors have not been able to find any documentation of any Other child having both!!