A Long Road

In the beginning of our Ashley's journey, Dave and I were so very naive. During the early days of her life while she was in the NICU at Medical City in Dallas we never saw today. We could only see what was immediately before her. I remember the morning she went in to have her reinastomosis surgery. It was so frightening and so exciting at the same time. I was terrified to have her taken away from us and to have her go into surgery, but I was so happy she would no longer have a stoma or an ostomy bag. When she came into the recovery room I was shocked by the size of her incision. She was so very tiny and the staples went all the way across her. She had been opened up from hip to hip and I had never seen anything more heartbreaking than watching her recover from that operation. At that time she was going through some of the worst things my mind could comprehend, but the important thing was that she come out on the other side. With His help she did.

Today as I look back over the road we are traveling I shake my head in disbelief. Those early days were actually some of the easiest she would travel. In those days the word transplant was never even mentioned. I had read about the possibility, but our staff refused to discuss it with us. "Not with Ashley" was the famous phrase. It could happen and it does happen but "not with Ashley". She had so much bowel left. Her ileo cecal valve was still in tact. Her intestine will eventually adapt and she will grow. Dave and I held on to those facts never really believing or considering that she would not. As I said earlier, we were so hopeful and so naive.

Once we finally knew that a multi visceral transplant was our only option we continued walking this long road with our sweet baby not really knowing what was in store. We knew the statistics. We were aware of the infectious complications and the possibilities of rejection, but we continued to be far too naive. The first time I saw her tiny body after coming back from her transplant operation I gasped. I had no idea she would be opened up from the top of her chest to the bottom of her pubic bone. This incision was far worse than the first two she had endured. She was still open, only the inner layers of her cavity had been closed. In some ways the road had made a circle and she once again had a stoma and an ostomy. There were moments when it was more than my mind could comprehend, but she was still with us and He was with her.

Ash would go back to the OR and have that incision opened up two more times in the following week. There were nights when I would sit next to her bed and never close my eyes because I feared that she might slip away from me if I did. The long road was getting longer by the minute and more difficult to travel by the day.

The evening that Ash suffered her cardiac arrest I pleaded to the Father as never before. She had come so far and had looked so good. Was this the way her journey would end? Had she traveled to the end of the road that He had laid before her? I had no understanding. I could find no answers. All I know is that I sat in that chair by her bed and shook for days not wanting to believe what had happened. I knew He was there with us, but what was He doing in her life? For the first time in this journey I allowed myself to wonder if this road was too hard. Had we gone the wrong direction? Through those days He continued to stand by me and He continued to hold my sweet Ashley Kate in the palm of His hand.

A few weeks go by and the road takes a turn. Once again the turn that lie ahead will be one I never saw coming. Not in the early days of her journey and not in the days we were living either. Scans, biopsies, spinal tap, cancer cells. In a million years I would have never believed that our sweet Ashley Kate would undergo chemotherapy. It took me by surprise. Chemo. It is poison. My Ashley would be poisoned for 18 weeks in an attempt to rid her of 4 tumors that had been found in her lungs. He is still with us.

Tonight I pack and prepare to take her to Dallas for her last cycle of chemotherapy. One more round and then we wait. Our road will fork in one of two directions. Over the next three weeks I will be preparing myself to accept whatever direction He has chosen for her. If our road goes one direction then she will be free of the cancer cells and her chemotherapy will come to an end. If our road goes the other then we will begin another 18 week course. No matter the direction He takes us I believe Him when He promises to "never leave us or forsake us". He will continue along the journey and He will walk each step of the road with us. I have to believe that because I am too tired to do this with her alone.

18 weeks ago I was speechless as I watched this poison drip into my sweet baby. The fear of the unknown overwhelmed me and I struggled not to cry as she played with her toys so innocently. Tomorrow as I watch the poison drip into my sweet baby and she plays with her toys I will probably not struggle against my tears but rather let them fall. I will plead on her behalf once again and ask that this might be the last time she ever has to endure the effects of these powerful drugs. I pray that our journey with chemo is ending and that our road is turning in a new direction.

It really is a long road. There has not been one step or one turn that we have taken alone. God has not allowed us to. He has always been there carrying us when the steps became to difficult to take. He has brought you along side of us. Praying. Encouraging. Supporting. Listening. Crying. Celebrating. Praising. What a journey! I hope you are wearing comfortable shoes! Thank you for traveling beside us. I know the bad days are tough, but aren't the good days miraculous? Tomorrow will be a good day. Ash and I will be celebrating the end of chemotherapy and thinking positive thoughts. We won't be home until late tomorrow evening, but I will update as soon as the house is tucked into bed. As always your prayers are appreciated. Goodnight and God Bless. Trish