Ashley's Story

She will leave fingerprints all over your heart


Sound the Alarm!

It is now 2:20 in the morning and the house is finally quiet and all are settled(again). Dave, my brother in law Gene, and myself tried to quietly sneak into the house around 1:45, but much to every ones "alarm" we managed to set the house alarm off not once, not twice, but three times. Honestly, nothing seems to be easy for us right now but you just have to laugh at the craziness of our lives. All I could do was crack up with each sound of the alarm because I just knew that not only had we managed to wake the baby, the grandparents, and the children but as soon as the cops showed up with their flashing lights that the whole block would be awake. Fortunately for our neighbors we managed to avoid the police and their flashing lights and they should still be sleeping as I type. Anyway, so much for quietly sneaking into the house to take showers.

After a long day of working on the remodel the last thing the guys needed was to be locked into the shop trying to get out so they could come into the house to shower. I finally figured out that they needed me to come out with a key because each time they tried to turn the door knob the alarm would sound. The look on their faces told me that they were not finding as much humor in our situation as I was so I tried to contain my laughter, but by now I have learned that it is just good therapy for me to laugh and to laugh hard at all the things that are happening in our lives. I would rather laugh than cry. So the children, the grandparents, and the guys are now snoring and I am wide awake just appreciating all these amazing people I am surrounded by tonight.

The remodel is slow going, but by Sunday morning we should have at least one functioning bathroom. It won't be painted, it won't have a floor laid, and it won't be decorated, but it will have a tub, shower, toilet, and sink that all work. I am going to be thankful for that. By Wednesday of next week we should have water in the kitchen and our washing machine should be going again. I will be able to clean the kitchen and do laundry and that will be something I am thankful for as well. Our bathroom is still very, very far from being functional, but Dave spent the day plumbing the tub area. It has no sub floor yet so you actually stand on the dirt under the house when entering it. There is still no sheet rock up, but I think that will be done tomorrow. Once all of the functional things are in place like walls, tubs, shower, sinks, toilets, floors, etc. then I will have to figure out how and when to find the time to get the rooms painted and decorated. Tomorrow I hope to locate an old piece of furniture that I can have transformed into the vanity I have in mind. If I can't find something local then I may venture over to Canton to see if they have anything I can use.

Ash looked very good today. Last night was a tough night for her as she received her chemo infusion into the early morning hours. She cried and ached for several hours, but at least I had a bed and a rocking chair in a private room to take care of her in. Yeah for her! she has now finished the first 2 cycles of her treatment and she only has 12 more weeks to go. I am so excited that she is finished with what I feel is the most dangerous of the three drugs. I pray that her cancer will be gone and she will be in remission at the end of these next 12 weeks so we don't have to start it again. They will scan her lungs at the end of the next 4 cycles to see if her tumors are gone. If they are not then we will go through another 18 weeks of treatment. Yesterday we saw her team of GI doctors who will be taking care of her in Dallas. They would like to do a biopsy of her new bowel next Thursday so they can have their own set of slides. They said they need to see what the cells look like while it is good so that they have something to compare to in case of rejection. It makes sense to me what they say, but I am so nervous about having someone other than her transplant team go into her new organs. I know that I have to trust them because we do not live in Nebraska, but it is going to take a lot of prayer on my part as I prepare to allow them to scope her next week. They also mentioned the possibility of a liver biopsy. I am absolutely not prepared to go there. Ashley's liver enzymes have been climbing over the last week and a half. We have had four sets of labs done and on each lab they are increasing higher and higher. If they continue to climb then the team in Dallas would like to do the biopsy. Her doctor told me that there are 3 possible reasons for their incline. Rejection. Infection. Blockage of a duct. None of them sound appealing to me, so I am just praying that this is nothing and that her numbers will just go back into range. On the upside of things Ash looks so strong. She is now sitting up and playing on her own for longer and longer periods of time. She has also begun eating small bites of baby food. Green beans and turkey were on her dinner menu tonight. She is so happy to have food in her little mouth. She drinks sterile water from a big girl cup. No tippy cup for her. She is not having any of that. She wants a drink from a regular cup. I almost cry each time I see her take a bite. There was a time not too long ago when I thought she may never be able to eat again. To see her progressing in this area is such a blessing. I am so proud of her. I just can't believe how far she has come over the last 6 months.

Now that I see the clock approaching 3:00a.m. I am realizing that none of you are even awake to read this post and so I should probably quit my rambling and just go lay down for a "nap". Sorry for the randomness of my writings tonight. I don't believe I have slept enough this week to be making any sense at all. I just wanted to say goodnight to you all and to tell you all how much I appreciate your prayers for our baby and for our family. I pray you and yours are all tucked in and sleeping soundly. I am thankful for you. Good night and God bless. Trish


At 2:48 AM , Anonymous Anonymous said...

It is wonderful to see what the Lord can do. Prayers are being answered every day and is evident in the life of Ashley. We will continue to pray that her liver enzymes will come within the normal range. Praise the Lord that she is now eating some on her own and that she is home and getting stronger and stronger.

At 2:52 AM , Blogger Tammi said...

I can't tell you the number of times poor DH has had to reseat toilets, fix leaky or non-functional showers/faucets, he has even put in two kitchens in the last 3 years Heck, we've even laid ceramic floor tile.(We keep finding ourselves in 'fixer-upper' type homes.)
I know how frustrating it is not to have your home in order ('fixer-upper' houses, remember) but I know that in the end it will get finished and everyone is much happier if Mom just takes some deep breaths (and tries hard not to look!)
I wish we were close enough to lend a hand! But, Hawaii makes a pretty far commute so I'll have to send a cyber-hug instead.
God bless you all tonight. As always your family and especially you pickle are in my prayers

At 3:45 AM , Blogger Emily said...

You can count on us night nurses to be up reading your random late night/early morning blogs. :) I'm glad to hear things are going well, we need to see pictures of her EATING!! Thanks so much for keeping us posted, we're thinking about all of you!!

At 7:08 AM , Blogger Carey said...

Good luck with the bathrooms, at least one is almost functional for ya.
Im praying for you all today as you rest and face the new day. I pray Ashleys numbers go down, and there is nothing wrong with her liver. Im glad to hear she looks good, and shes eating. Thats awesome!

At 7:34 AM , Anonymous Karen Jacobs said...

Please give me a call when you are ready to finish up the bathrooms. I can't do plumbing or tiling, but I can paint! I consider it a stress reliever ~ much to my fmaily's dismay at times! Please drop me a line and I will be more than happy to lend a hand.

At 8:29 AM , Blogger jtcosby said...

Awesome! :) I love the boys getting stuck with the alarm...we've done that a number of times...and our latest is setting the smoke alarm off when we take a shower...UGH!

At 9:20 AM , Anonymous Nikki said...

All I could think when I reached the part about turkey and green beans was "Thank You, Jesus." I agree with Emily. I would LOVE to see pictures of Ashley enjoying her dinner. What a simple blessing - to taste food, and more importantly to get nourishment without tubes and timetables! Yay Ashley!!!!

At 9:23 AM , Anonymous Nikki said...

P.S. I meant SOLELY without tubes and timetables; I didn't mean to imply that has ALL disappeared. When I reread it, it sort of sounded like everything is peachy when I know there is still a long way to go and we continue to pray many times a day. I just got so thrilled at the picture of Ashley getting to eat some like a "big girl." :)

At 9:54 AM , Anonymous Anonymous said...

So happy to hear Ashley remembers how to eat after going without for so long! I can just picture her with her little snacks and those chubby cheeks and hands! She is so sweet. Get some rest! LOL Prayers and love.

At 3:31 PM , Anonymous Anonymous said...

Trish-I must admit, I was laughing along with you when it came to the house alarm. We have one and even though I know it's necessary, I always set it off at inappropriate times. Sheesh!

I am SO happy to hear that Ashley is taking bits of food. Oh, what a blessing and answer to prayer! I am also happy that you are making bathroom progress. What a blessing!

Continuing to pray for the precious Adams family as usual. Praying specifically for Ashley's liver enzymes to drop to normal range.

I love you guys!



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