Ashley's Story

She will leave fingerprints all over your heart


Sleepy Baby

Our Sweet Ashley is having one of those sleepy days. She slept all night long, then didn't get up until almost 12:30, then threw a fit during her therapy session, then took an afternoon nap, then played for an hour, and is now having an evening nap. Days like today are the ones that cause concern. Her lab work looked really good yesterday and she shows no signs of not feeling well. She just can't stay awake today and this makes everyone scratch their heads and wonder why? I find myself praying that she might just be preparing herself for her chemotherapy on Thursday. I suppose we will have definite answers in just a few more weeks. At the end of this last chemo cycle we will make the trip to Omaha and scan to see if her cancer cells are gone or if they have spread. I really don't feel as though they are still there, but I remember feeling the same way the night our surgeon poked her head in the door to confirm that her biopsies came back positive for cancerous cells.

Dave and I are struggling trying to decide just what is the right course for Ash. I know when we return to Omaha one of the discussions will center around scheduling Ashley for her take down surgery. We have mixed emotions about this surgery. Generally it is done around the one year post transplant mark. This is where they take the loop of her small bowel that is now on the outside of her abdomen and place it on the inside reconnecting all of the small and large intestine. She will also be placed back on TPN while her bowels recover from the operation and we will slowly begin introducing her feeds at the rate of 5ccs an hour as far as she can tolerate. The largest risk she faces during this operation is of course infection and sepsis. Anytime you operate on the bowel you run a huge risk of infection. We of course want to do what is recommended and safest for Ashley, but at the same time I find myself fearing all that may come with this next step. We will stay in Omaha a minimum of two months as she recovers and longer if she encounters any complication post surgery. Obviously I have strong emotions about returning and having our family separated once again indefinitely.

One thought is that we would like to let Ash have a period of time (6 months or possibly a year) to just be Ash without any major operations or chemotherapy. I would like to see her feel strong and see what she can learn and accomplish during this time. The other thought is wouldn't it be nice to just have it all behind us and then move on from there. Once the operation is done and complete and we move home again then she could take off and begin to feel strong and we wouldn't be facing such a major obstacle in front of us. I really don't know which way things are going to end up happening, I just know that this is a tough decision and I have no idea what we should do. Just a little something we are beginning to pray about.

To be honest with you, emotionally I am not ready to take her back and live through those uncertain days again. I wish I could say that all of those were behind her and that she is just going to be here to grow up and be happy, but I can't. Either way the decisions go we are enjoying each moment we are given with her and it has been such a blessing to be home together.

Thursday is approaching and I find myself asking the Father to help her through it one more time. It seems so unreal to be coming up on her last of 6 cycles. She has done really well and we are so grateful. She has managed to come through so far with nothing more than a little cold. One more treatment on Thursday and then by Monday her vomiting will start. By Thursday her count will go down and then a week later she will start to recover from it all. At the end of the three week cycle we pray she is free of chemotherapy and it will all be over for her. We are so close.

Well, I suppose I should begin dinner. Dave and the kids are counting on having tacos waiting for them as they come in from practice. Wish I could say I was counting on the same thing, but unfortunately it is time for me to try and lose some of the extra pounds I put on while eating out over the last year. Take care and God bless you. Trish


At 10:51 PM , Anonymous Anonymous said...

There are so many warranted concerns. Praying for God to guide each & every tough decision ahead with regard to her care & future surgery. Praying for HIS peace & strength as you move back into those areas of uncertainty & fragile times ahead.....(reminds me of eggshells) delicate they are....& how easy it is to break one. Have you ever seen one that has the yolk taken out via a pin hole & is extravagantly painted. I had a friend from Europe who brought me one. Anyway, I wondered how someone could become expert at such a process without breaking the egg shell. It was gorgeous when it was complete. Almost didn't seem possible that it was that fragile when looking at the finished product from the outside. Long scenerio....but I picture this surgery as that is a delicate procedure but the doctors in Omaha....know what they are doing they are experts with this delicate process....& I know that Ash will come through it all...& it will be hard to believe years from now that she was that delicate little girl. I know that life for her & you guys will always have ups & downs ....& uncertain moments....but I still believe God has amazing things in store for this child. Praying....

At 7:56 AM , Blogger ManyBlessings said...

Praying for your tender hearts as you anticipate the journey ahead.


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