But...There is STILL Joy
Things are getting harder every day...but...there is STILL joy.
Yesterday was one of the most difficult days we've had on this journey...but...there is STILL joy.
Ashley Kate is beginning to show more and more signs of struggle...but...there is STILL joy.
Our hearts are breaking...but...there is STILL joy.
I can not discuss all the details of the struggle or the particulars of her broken body at this time. The words won't come and the emotion involved is just too deep, but I can share with you that there is STILL joy. When she smiles...when she laughs...when she gets that twinkle in her eyes...our hearts swell with such joy that we can no longer be sad. Knowing that our sweet girl can still, in the midst of the unbearable, find joy keeps us going day after day.
I do have a few specific struggles that I will share with you so that you may pray over them.
Ashley is at a very, very high risk for infection. Her ANC is .2 and her WBC are 1.3 this week. It is not expected for this to improve, but it will probably become even worse. She is currently struggling with a toothache, an ear ache, a cough, and a headache. These are her daily complaints that she is able to share with us. Any and all of these issues have the potential to take her from us. Silly I know to think that a tooth ache could actually take her from us when she has overcome so much, but this is our new reality. Yesterday I spent over 2 hours with her doctors and one of the main topics discussed was infection. It is very, very possible, and even probable that a small issue may bring us to the end of her journey. Your prayers over these things would be greatly appreciated.
Another great concern is her inability to make blood. She is at great risk for bleeding out. We have seen her begin to bleed on a few occasions, but so far it has resolved after a few hours. This morning she is bleeding from her stomach into her g-tube and drain bag. She is also throwing up blood. Ashley's platelets are very low this week. Because of the enlarged spleen due to her liver failure the spleen is "gobbling up" her blood cells. This include platelets and WBC. Platelets give her ability to stop a bleed or allow her blood to clot. The WBC fight infection. Her blood issues are very, very serious at this time. We can continue and will continue to support her with blood transfusions, but there is nothing we can do to stop her spleen from destroying it. This is another area you could pray over for her.
Bruising is our other issue at this time. The "trauma" from simply lying on her pillow to rest is causing severe bruising underneath her skin. We have to be very, very careful when touching, moving, changing, or dressing her. We were even told that kissing her goodnight may result in a horrible bruise the next morning. I can't even explain how painful that is to our hearts. We of course do still kiss on our baby, but oh so gently. We have asked that no one other than Dave or myself or Blake or Allie touch or kiss her now. I would never deny her knowing how very much she is loved. We just have to be careful and mindful of her fragile body.
One last request. Blake has 12 more days left in this summer schedule barring a win in the last tournament. Thankfully he is playing all 12 of those days in the Dallas area. I haven't decided how to get through the next 12 days just yet. The easiest and most affordable option is to stay in the area, but with our current situation I feel I may need to drive it back and forth each day. Your prayers for safe travel and peace of mind while I'm on the road with Blake would be so appreciated. He and Allie remain a priority in our lives even in the midst of this journey. I feel it is important that he has our support right now although he has made it very clear that he understands Ashley is what is more important. I never want to convey to my teenagers that their lives and their interests are not important to us. I believe it is vital that he not miss these next 12 days for recruiting purposes. Its just going to be a hard time for us all, but we will get through it. My prayer for him is that he can separate his heart and the emotions he is experiencing from his game. How I would love to have shielded and protected him from all of this until the season was over, but it was just not possible.
I share these things so that you may know how to pray for our precious girl. I don't share them with you to frighten or scare anyone. I think it is very important to realize that she is still here. She is living. She is not gone. She is home. She is happy, and silly, and unaware of what is happening to her. Ashley Kate still finds JOY in the midst of her struggles.
There are smiles and laughter. There are tears and sadness in our quiet moments, but around our girl there is only joy. How grateful I am for the JOY she has brought to us, and the JOY she has taught us how to feel.