Processing

Its been one of the longest days of my life. I'm exhausted. More mentally than anything. My head hurts. My eyes hurt. My heart hurts.

I've been trying to process all that was thrown at us this morning. I'm trying to gain an understanding of the plan and of what has actually happened to our Ashley. I know you all have lots of questions. I do to. As I figure it out I'll let you know.

My biggest fear? Losing my daughter.

My biggest concern? Losing the life she has come to know and love.

My biggest regret? Losing my grasp on what transplant life was really capable of doing to my Ashley and to our family.

The real deal is this. Rejection can occur at anytime post transplant. On any day without warning. There may never be an answer as to how this happened. The most brilliant surgeons in the world have been trying for years to put their fingers on it and they just don't know why some people's bodies reject a transplanted organ and others do not.

Today I was told the good, the bad, and the ugly. So I guess I'll tell you the same. There is no epithelial layer left inside the walls of Ashley's bowel. There is no evidence of villi present. The mucosa has slugged off. There are no cells to be found in order to count the death of the cells to determine the severity of the rejection. The only thing we have going for us is the pathologist did find a few crypts left. It is that word "crypts" that I am told made the chief of transplant surgery say, "If we have crypts then lets hit her with Thymo." It is only because of that word we are allowed to even try and bring her out of rejection. The wording used to describe Ashley's rejection to me this afternoon was that it is one of the worst cases they have seen in a long while. This conversation had my head spinning.

"What do we do if we can't reverse this?"

We may have to explant Ashley's bowel.

"How long can she live that way? Can she survive?"

Without a bowel she would be completely TPN dependant. She will live until she dies of liver failure due to the TPN or until she is out of access. We currently have two access sites left and we are using one of them with her new central line. One of the biggest struggles will be keeping her infection free and non-septic. So the short answer is...not long and probably not.

"Why don't you re-list her for transplant?"

We aren't there yet. We may get there. The last thing you want to do is this. I was told that many parents choose not to do this again. I can honestly say that I believe Dave and I would try again.

It was stressed to me over and over again that this is not good. She may not come out of this rejection. Her chances of graft survival are severly decreased because she has rejected this same organ two previous times. Surviving a third round of this severity is not likely.

BUT... she CAN do this. I believe in my heart that she can. I still don't feel panicked. I can't explain it. I'm scared. I'm hurting. I'm heart broken. I'm not giving up. She has about a week and 1/2 to prove to us all that she can do this. They have scheduled a scope for Wednesday morning at 8:30 to check for any signs of healing or regeneration.

Ashley is at great risk for her PTLD to return. Her blood still contains the virus that triggers the cancer. During the treatment of this rejection she will be opened to allowing that virus to attack once again. She will also be at great risk of a sepsis infection. Sepsis is difficult to survive. She's done it before, but it wasn't easy.

My daughter is brave. I have never been more proud than I am at this moment of anyone or anything in my entire life. Ashley Kate has been through a lot today. A peripheral IV was needed to run the drug into her system. Trust me when I tell you my sweet girl is my hero. How precious she is. She signed thank you and bye bye as they left her all the while tears were steaming down her cheeks. Her body is currently receiving the thymoglobulin. It will finish running around 4am. Tomorrow she will be given a break and then Sunday the second round will begin. We will rest every other day until treatment is completed or proven to be of no avail.

It may be a long road back and I have no idea where it will take us. My hope is that at the end of this journey we will arrive at our front door back home in Texas. With our daughter in our arms.