Its not good

Don't continue reading if you don't want to know the ugliness of bowel transplant. Stop now.

Our nightmare is beginning. The worst of what I lie in bed at night and fear for my daughter has just begun.

Ashley is in severe rejection of her small intestine. There is no mucosa left, no crypts, no evidence of any functioning bowel in its current state, very little cells found in apoptosis to read. I think this is what I've just been told in rounds. Its confusing. Scary. I am now numb.

She is in such severe rejection that we are skipping the first two steps of treatment. We have never done this in the past. We have treated her with pulse steroid treatment and gotten results. This time we are going straight to a drug they call Thymo. Its actually called thymoglobulin and is derived from rabbits.

The risks are high. The drug is dangerous because of the effects of slamming her with such suppression that all things are now open to her. She is at high risk of sepsis, PTLD again(transplant cancer), and much much more. So much so that my mind is reeling as I read and try to prepare myself to be somewhat informed. Treatment is being started today. Its going to be a rough 24 hours for her as we will be infusing the first dose over that time period. Fevers, chills, pain, headaches, nausea, etc. etc. is what I'm being told to expect. The list only gets scarier from there.

Most commonly the patient has an adverse reaction to the rabid parts of the drug. The part from the rabbit. This is all so insane! She was just playing in our home. What in the world is happening? I'm so angry. So hurt. So scared.

I asked what her chances were of beating this rejection. 50-50 was the answer given. The course of treatment will be over the next 10 days to 2 weeks. We will re-biopsy next week and see if there is any regeneration taking place. We should know then if the bowel is capable of being saved.

If this doesn't work then it all becomes experimental from then on. No tried or proven methods. Just experiments.

I was told they have had some success pulling some kids out of this type of rejection this year using this drug. Now we just have to figure out how to make my Ashley one of those kids.

Today sucks and I'm ready for it to end.

Please do not tell my kids. If you are reading this and you are at Nationals with Blake and Allison please remember that we are choosing to protect them at this time. Dave is on his way to see Blake play today and he will be breaking the news to them sometime over the next 2 or 3 days. Pray for all of my kids. Especially my sweet Ashley. Please spread the word and ask every one you have ever known to pray for Ash.