Ashley's Story

She will leave fingerprints all over your heart


Imagine If... could stop the pain and suffering could give her the opportunity smile again could hear her giggle a few more times could get lost in her eyes as they sparkled with joy could take her back home and allow her to just be 5 for a little while longer. could see her snuggle on the couch with Blake as the Rangers played. could watch Allie carry her from room to room on her hip. could see her dance with her daddy before bedtime. could watch her peek around the corner to see what was going on in the other room. could surround her again as we all lifted her up in prayer each night.. Her mommy, her daddy, her big brother, her beautiful sister, and her. Just the 5 of us.

Just imagine. Its what we are imagining today.

Ashley's biopsy results came back. The news is nothing to write about. I knew it the moment the scope began. It weighed on my heart all day yesterday, all through the night. It was part of the reason I didn't want to participate in today. The thymo treatments that ravaged her tiny body did not work. There is nothing more than can be done to save this organ. We could wait a thousand more days and the attitude coming from our team is that it would be to no avail. Our time with this organ is almost up. The only thing the surgeon could offer me this morning was the idea of ex-planting the bowel in an effort to give her back some quality of life. Yesterday he was opposed. Last week the previous surgeon was too. This afternoon they will all meet and discuss the idea. Removal of the diseased organ should give our daughter back to us. It should end her suffering. She just has to survive the operation and then we can go home. At that time she will be fully dependant on this one central line to keep her alive. We will grasp onto each moment that God gives us with her in our home. We will do our very best to make as many memories as we possibly can with her. If she comes home some how we are taking our family some where and we are going to get away from this insanity if for only a few days. In the meantime this transplant team will try and decide if they will allow us to try again. If they will re list her on the organ waiting list. We are in the process of fighting for the right to infuse Omegavin along with her TPN instead of the normal lipid mixture that kills our TPN dependant children. Its going to be a battle, but we are requesting it be granted under a compassionate use grant from the FDA.

The road from this point on is not easy. As if any of this has been easy. I don't know the number of days my sweet Ashley will live, but I do know that we will love her, cherish her, and celebrate her and never look back. NO REGRETS. She deserved life. We have done and are still doing everything in our power to give it to her.

Lots of disappointment. Lots of tears. Lots of hurt. Pray for my husband. Pray for the team as they attempt to develop the best plan for the remainder of our sweet Ashley's days. By the grace of God He may grant us months, another transplant, and a few more years. Is there anything to big for our God? I think not.


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