After sleeping all day our sweet Ashley Kate is up and ready for battle. She has stolen the remote from her dad and they are battling over what buttons she is allowed to push and which ones she is not. She is looking for Blues Clues and he has had it with Blue. As I sit and type I can already predict the outcome. He is no match for her. She will prevail because she has him wrapped around her little finger. He tries to be tough, but to no avail. I am giggling because she keeps messing up the T.V. He just got on to her for pushing a button he didn't even know was there. Now the screen is saying all kinds of stuff we have never seen.
I can't believe it is so late. The days are always messed up when she crashes from her chemo treatments. I spend most of them checking everything I can think of. When she sleeps as long and as hard as she has today I find myself in a battle of my own. I struggle and fight against fear and worry. I try not to, but once it starts it is so hard to get it to go away. I know she is weak from the chemo, but at the same time I just want to be sure that while she is down nothing else is going on. She has no appetite today and no energy. The battle over the remote is the most activity we have seen from her all day. She doesn't want to be held. She can't stand to be touched. She just wants to sleep in the middle of our bed and not be messed with. I try and oblige as much as possible, but between meds, pump settings and alarms, dressing changes,diaper changes, and ostomy care it is really impossible to leave her alone. I am so thankful this is her last cycle of chemo. In a few more days it should all be over with and then I am hoping to see more and more good days for her.
We are beginning to make plans for our trip to Omaha next month. Obviously Ashley can't fly commercial so we are hoping to get a med flight approved through her insurance. If not then we will try and get a flight through a volunteer organization called "Angel Flight". The other option is to make the drive out there. In that case Ash and I will probably go alone because Dave won't be able to take that much time away from the office. Once we are there they will do a full body and head cat scan to check for any suspicious looking areas. We will do a series of labs and tests to make sure the cancer cells are gone. The team also just needs to "put their eye on her". They told me there is something to be said for just looking at her. As long as we get the all clear sign then I don't plan on being there for more than just a few days. I am kind of looking forward to visiting. We met so many wonderful people in Omaha and I hope to get the opportunity to see them again. One of the blessings of this journey into transplant has been the people God has brought into our lives. I really believe the Father directed us to Omaha because He had lifelong friendships waiting there for us. I will forever be grateful to those who made our time in Omaha easier and I think of our friends there so often.
Well, the battle on our bed continues to rage and Ashley's daddy has just banished her into her crib. Not only had she stolen his remote, but she began to steal his blankets so that she could play peek a boo. The only problem is that he is tired and is trying to sleep. Silly dad, he has no idea who he is up against. She is way too cute to try and fight. He might as well give up because I am pretty sure we will be listening to Blue as we drift off to sleep. Good night and God bless. Trish