Ashley's Story

She will leave fingerprints all over your heart


Ashley and I

So much of her life it has been just that, Ashley and I. For months on end that's the way it was. Many, many nights I longed to be home with Dave, Blake, and Allison, but our time spent together was nothing short of amazing. During those long days and nights away from our home here in Texas I would sit and hold my bundle of baby girl and just stare at her face. I spent hours memorizing every detail of her. I made it my job to know her. Every part of her. So many of my precious friends were forced to say good bye to their babies and something inside of me broke as I realized they would never again have the opportunity to gaze into those tiny faces. If the day ever came where their reality became mine I knew that I wanted to be able to close my eyes and truly see her face for ever. So I studied. As I study every inch of her I would pray. I would thank the Father for the way He had made her. Her eyes, those long lashes, round, puffy cheeks, tiny pink lips, that little point on her chin, the tiniest ears you have ever seen. Put all of that together and it makes for a beautiful little girl. One of the prettiest I have ever seen. I loved those moments with her.

Since returning home life has been crazy. There haven't been too many hours for Ash and I to spend alone. Just her and I. I'm not complaining. I love having the family with us. I'm just saying that I have been missing those quiet hours that I so often spent staring at her face and praying over her life. Tonight I had the opportunity to have a few. Blake and Al were at the house with Dave working and Ash and I were here at grandmas. She and I retreated to the guest room and we laid on the bed to play and talk. How wonderful it was to stare into her face. To ask her what she was thinking about and to imagine her answering me. She didn't have too much to say. Just the occasional squeak as she chewed on her fingers, but it was nice to just memorize more and more of her. She made me laugh. She would close her eyes and pretend to be asleep then pop open her eyes and giggle when she caught me looking at her. We sang songs, played patty cake, watched a movie that made us laugh together, and just enjoyed hanging out. When I reached across her to grab my drink she would reach up and push my arm out of her way. "Excuse me," I would say and then laugh at her because she did not want my arm obstructing her view of Blues Clues. Shes a funny little pickle. Everything about her makes me smile. This morning I had the privilege of watching her big brother and sister sit on the floor and play with her. All three were giggling together just the way I had imagined they would once we made it back home. They were just enjoying her and my heart was more than blessed to look on.

She is now sleeping and I once again have a moment or two to gaze at her and pray over her life, her body, her organs, her struggles, her fragile health, and her purpose. How did I ever fall into this wonderful life I am living? I have no idea, but I am so grateful for it all. The good and the bad. I believe its the making it through the bad together that helps to sweeten the joy we find in all of the good. Ashley and I are home again. Ashley and I are surrounded by our family. Ashley and I are happy. Ashley and I are blessed. Ashley and I are tougher because of what we have been through. Ashley and I are sleepy. Ashley and I are ready to call it a night. Good night and God Bless you. Trish

Fun Run ins

Today has been filled with some really fun things for me. As I have run around town I have found myself involved with a few run ins. None of them involved the police, and they didn't involve my car but they all involved friends. New and old friends. Some I have known for years like the one I saw in the pharmacy early this morning, another I hadn't seen in years like the one I ran into in Lowes, and some I had never met face to face until today but because of Ashley's story we were already friends. How blessed I felt knowing I could see familiar, friendly faces no matter where I ran into. Just being home and in a position to see my friends again is one of the best feeling in the world. It just made my day to visit with them all.

I sit here now rocking and typing and rocking and typing. My sweet little Ash is not feeling too well today. She woke up smiling and vomiting and then her smiles turned into fussing. Nan took care of her for a while so I could run some errands and pick up supplies for the remodel, but she eventually had to call me because Ash was just so miserable. She has no fever so I am pretty confident it is all related to her chemo treatment, but you just never know. So when I get a call I stop whatever I am in the middle of and come as quickly as I can. After making an assessment and not seeing any obvious signs I begin to breathe again and settle in for a rough ride. Nothing I do seems to help so I just keep walking and rocking and talking. One of the greatest things about this process is that my arms are actually getting tired. Not tired of holding her, but tired FROM holding her. She is so big! 22lbs!

As far as the remodel goes it seems we take one step forward and two or three or four steps back. That is just the way it goes with older houses. Unfortunately we happen to love our old house and we would really like to continue raising our family in it. Dave and Gene are ready to throw me and my book out of the house. I bought a book with several pictures of bathrooms that I like. They ask me how I would like something done and I answer, "Just look in the book." The problem is that my bathrooms aren't the same size as the ones in my book and I also want them to mix and match different features from different pictures that I have picked out. All I know is that I can see how I would like it to be and I hope that they can come as close to my book as possible. My book has become the running joke in our house. I just keep trying to remind myself that this too shall pass and once it has it will all look so nice, but when you are tired it is hard to stay positive. Dave has decided to take the evening off tomorrow after my brother in law leaves and spend some time with the family. Perhaps we will walk down to the pond to do a little fishing. That would be so nice. Last night as I sat and listened to the guys snoring I realized that Dave and I had not slept in the same house in over 8 days. How sad that mad me. Even though I have moved home we still don't get to see each other. I am looking forward to tomorrow and the time we plan on spending together as a family. This remodel sure has interfered with our normal life. Good thing it is only a temporary situation.

Oh'well I ordered dinner for the guys and it is probably about time to feed them so they will be willing to keep on working. Ash has finally drifted off to sleep so I am going to sneak back into town and keep on opening my book just in case they forgot what they are supposed to be working on. Thanks so much for your prayers for our Ashley. We are keeping a close eye on her labs and her vomiting. I pray we don't have to make another mid night run into the ER for fluids. I'll get back to you all later. Take care and God Bless. Trish

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


Bloom Where Your Planted

We are home! Yeah us! Ash and I survived a very long, unplanned, over night trip to Children's in Dallas and I am so happy to be back. We woke early this morning feeling like weeds rather than roses, but on our drive home I realized that even weeds bloom with their own sense of beauty. How happy my sleepy, grumpy self became as I enjoyed mile after mile of gorgeous wildflowers growing along the highway. I'm sure some of them had been purposely planted there for travelers to enjoy(like the bluebonnets), but it became obvious to me that many of them had been "planted" there by the wind, an insect, or a bird. Perhaps "they" never planned on growing along side a highway in east Texas, but there they were doing a beautiful job of blooming just exactly where He had allowed them to be planted. Oh, the wisdom I found in them this morning. I allowed those flowers to teach me a lesson during my drive and I reflected on how wonderfully our lives have been blessed by those who are doing just exactly what those wildflowers were doing. Blooming where they had been planted. My mind began to think of our surgeons, our coordinators, our doctors, our nurses, our therapists, our transplant friends, and many, many others who were doing just exactly what they were called to do. I have no idea if our transplant surgeon dreamed of taking organs in and out of babies when she was a child, but how grateful I am to her that she has allowed herself to bloom where she was planted. Without her willingness to study year after year after year where would my Ashley Kate be today? God had a plan, a purpose, a call on her life and because she is "blooming", He has used her to impact the life of a little girl from east Texas and all those who know her. I am so thankful to all those whose paths God has allowed to cross ours. Each blooming with the talents and skills He provided them with.

When I arrived home from Nebraska I found a surprise growing in my front flower gardens. Actually two surprises by the names of "Jedidiah" and "Goliath". Jedidiah and Goliath are destined to be my Allie's two prized winning cabbages. Thats what I said, cabbages. She has a plan in mind for them. She is attempting to win a thousand dollar scholarship with her two little ones. Actually they need to be big ones. They need to be the largest two cabbages in the state of Texas grown by a third grader. Now, I agree this is a prize worth attaining, and I fully support my Allie's love for anything she can plant in the dirt and love and nurture into something beautiful, but I would not have chosen them to be planted front and center in my flower garden. Perhaps a nice vegetable garden at Graypa's house would have been a more appropriate home, but nonetheless Jedediah and Goliath have no idea they have been planted in a flower garden. They are doing what they have been called to do. They are blooming proudly where they have been planted. She loves them and takes care of them and they continue to grow. Just like Al's cabbages I had no idea my sweet Ashley Kate would be planted in the middle of transplant life, but I am so proud of the way she has decided to bloom. She continues to "bloom" time and time again no matter what circumstances she finds herself in. God has allowed her to be planted on this path and she is beautiful! Just as Ash has been "planted" along this journey I too have been "planted" in a place I never imagined myself to be in. I never knew I could do all that He is teaching me to do. I never dreamed I would be allowed to love such a brave little pickle.

I am so thankful for the drive time I had with my Ashley this morning. I learned that I have been planted just exactly where He wants me to be and even on the days that I wake up feeling like a dandelion rather than a bluebonnet as long as I am willing to open myself up to bloom then I am doing what He called me to do. My goal today is to bloom where I have been planted(just as soon as I take a shower and brush my teeth!). Thanks guys for checking on her. She is doing well today. A little run down and tired, but happy and ready to bloom. Trish


Thr craziness is getting more crazy

When Ash and Trish were in Omaha I often pictured what it would be like when they got home. I pictured us sitting around in our living room watching Blake and Allie playing on the floor. I pictured a relaxing enjoyable time. This is not the case. We have not yet had a time together. She has been home almost 2 weeks now and I don't think I have seen her or held her more than a half dozen times. Don't get me wring, I am so extremely very thankful they are back in TX, but I am really looking forward to a time when the house is put back in a livable condition and we can all be together. But for now I will spend my days working and my evenings trying to build some bathrooms.

Trish to Ash to Dallas today for some appointments and things got crazy before they ever started. The cancer people called me to tell me they had cancelled her appointment to try to make things easier on us. Problem was they didn't call to make our lives easier until after Trish and Ash were already half way to Dallas. They told us they didn't have any rooms available for Ash so just plan on coming for the day and leaving late tonight. Once Trish and Ash got over there they were not ready to give the treatment and yawdy dawdy doo one thing and another and now they want them to spin the night. Problem is Trish did not pack Ashley or herself for an overnight trip. Trish has not yet eaten today and she is beginning to hungry and grumpy. Have you ever been hungry and grumpy, it is not a good place to be.

On the upside of things. My brother-in-law is here and we are making forward progress on the bathrooms and since Ash has come home she seems to be progressing and looking better than she has in a very long time.

I must go build something now so I will talk again later.



Good night, Sleep Tight

Bedtime, it has to be one of my favorite times of the day. Spending those precious moments with each of my children, kissing their foreheads, and loving on them just does my heart good. At the end of a tough day nothing can heal my hurts like having their arms wrapped around me as I tell them how much I love them. When nothing seems to be going right, I always know that when they are tucked in safe and sound it will all be alright. I dreamed of tucking them in, holding them, talking to them, and watching them sleep for so long that it now seems like I am living a dream. I am not sure if I can tell you how good it feels to know that we are all under the same roof again. I know its not our roof, and its not our rooms, but we are together and I know that they are safe.

I usually start by telling Blake goodnight. He is sleeping on the living room floor. I love to go back and forth with him about who is going to be rubbing whos feet that night. He always says, "I'll do yours if you do mine first." I'm way to smart for that. He is always asleep by the time I finish foot number one. I tell him how much he is loved. I tell him I am proud of him. I let him know that I am thankful to be his mom, and I kiss that precious forehead before moving on to his sisters. As I walked away from him tonight the thought of him growing up and not being there for me to tuck in some day slipped into my mind. Our time is so precious and it goes so fast.

Next I move on to my beautiful Allison. She sleeps in the guest bed with me most nights(Dave sleeps at our house sometimes, and lately he has been out of town a lot). The first words out of my mouth to her are,"You know that your my best friend,don't you?" She responds,"and your mine too." I pray she always feels this way. She is growing up so fast. She gets taller and thinner everyday and with her new haircut it seems that all the little girl in her is fading away. I tell her how much she is loved, how proud I am to be her mom, and then I move in to kiss that forehead. She always reaches up for one more hug before allowing me to slip into the other room. I love that last hug each night. I move on to our Ashley with a smile in my heart left by her big sister.

Our sweet Ashley Kate is sleeping in the sun room. Her nan is helping take care of her during the night. What a blessing it has been to have her helping me! My Ashley takes a little more tucking in than the other two. First we draw her round of meds and give them. Then we check her feeds and make or fill formula bags for the night. After changing, emptying, and dressing in a set of soft, pink, p.j.s we are ready to cuddle. The things I say to this little one so often bring on my tears. I always tell her how proud I am of who she is. I tell her how brave and strong she is. I tell her how blessed I am to be her mommy. I tell her to be tough and to keep fighting. I tell her she is beautiful and she is my gift from God. Sometimes she nods at me as if to answer that she understands all I am telling her. Sometimes she just smiles up at me. Sometimes she closes her eyes and begins to drift off to sleep. That tiny forehead receives a hundred tiny kisses. I am allowed to linger longer on her head and I love to just smell her sweetness. This little one touches a part of my heart that had been reserved for her for so very long. As I lay her down I often whisper thank you over and over again. I am thanking her for fighting so hard to stay and I am thanking the Father for allowing her to stay. If I am given a thousand nights with her, ten thousand nights with her, or a hundred thousand nights with her I will never cease to say those two words. Thank you. Thank you. Thank you. Thank you, Ashley. Thank you, to her birth mom. Thank you, to my precious friend who made the call. Thank you, to our donor family. Thank you, to the Father.

Tomorrow we will be at her appointments in Dallas. Ash and I will be traveling alone. I hope she sleeps on the drive. I am planning on being back in Longview by the early evening hours. I will talk to you all once we make it home. Thank you for praying for our baby today. I appreciate each of you who continue to love on her. Goodnight and Sleep tight. Trish

Answered Prayer

As I lay down next to my Ashley at 3:00 this morning I prayed that she might be allowed to just rest. To sleep so deeply that she not be nauseated and not wake up to vomit. I prayed and prayed for protection over her new organs and her little self as her body struggled to battle whatever had invaded. When I woke at 6:30 this morning I realized that she had not budged in over 3 hours. What a blessing! That had been the longest stretch without an episode of vomiting all day. I was so happy to see that she was resting. As I sent the kids off to school this morning I had hoped to lay back down next to her and catch a little "nap" before beginning the day, but she woke with a fury. She was so grumpy! Allie looked at me and said, "So much for going back to sleep."

To my surprise her grumpy attitude did not last too long. She was so tired she "grumped" her little self back to sleep. She has spent most of the day sleeping and as long as she is sleeping she is not nauseated. What an answer to prayer. I could see that she needed to sleep so badly and I am so thankful that she has been able to rest.

Tomorrow we will be in Dallas to see our team of doctors that took care of Ash pre-transplant. They will be managing her care here "locally". We were scheduled to be admitted to the oncology floor tomorrow afternoon for a 12 hour infusion, but they have called to tell us that they do not have an available bed for Ash. She has been bumped and we are now waiting for a call over the weekend once they have space for her. Last time we had chemo done in the treatment center and it was very difficult to manage Ashley's ostomy care in such a public room. There are little cubicles with recliners in them and the room is full of children receiving their infusions. We were excited about having a private room to take care of Ash with a crib in it during her 12 hour therapy. I am just praying that it will all work out. I just don't think we need to take Ash into the treatment center with this virus. We will be staying in Dallas for the weekend waiting for an available room for her treatment.

I appreciate your prayers for our little one today. I know that God is listening to them. She has not spiked a fever, she has not begun "stooling" out, and she is resting peacefully as her little body works on recovering. How wonderful it would be if her cultures came back showing nothing. Perhaps she could just have caught a little 24-48 hour bug? What a blessing that would be. Thanks for loving her today. Thanks for checking on her today. Thanks for caring so much. Take care. Trish

Back to the ER

We have just returned home from a very long evening spent in the ER with our sweet Ashley. I am afraid she has caught some type of a virus during this last drop in her white count. She continued vomitting all day long and I became nervous about dehydration. I called and spoke with our team in Dallas and they could not assure me a quick and safe place for my Ashley to wait so I decided to go local. We were met with a wonderful staff and a very attentive ER doctor who took all of my information and concerns very seriously. Within minutes our labs were sent and fluids were running to replace some of the losses due to the constant vomitting. Ashley's monocytes and lymphocytes are elevated and in connection with the vomitting it all points to a viral something. What it is we do not know and probably won't be able to find out. The important thing is that we stay on top of her fluid issue. If we fall behind then we must fight an uphill battle and I have seen far too many transplant kids struggle like none other because of this. We are scheduled for an oncology admit on Thursday at Children's in Dallas to receive Ash's chemo and monthly cytogam infusion. We will also see her GI team that morning so my prayer is that Ash's vomitting will slow and that her stool will not pick up. I would like to make it to Dallas on our own rather than going by ambulance. Everyone seems comfortable with her status at this point, but we all understand that we could be back in the ER at any point tonight, tomorrow, or tomorrow night. Ash is so exhausted. She has been awake since 6:00a.m. yesterday and has not fallen asleep until a few minutes ago. I pray that she is so tired she will not be able to vomit and that we will be able to keep her fluids in her through the rest of the night.

Nothing can be taken lightly when caring for a transplant patient. Fluid issues are one of the hardest battles we face. When they get down with something even if it is small they can not fight it off like the rest of us. When you add chemotherapy on top of immunosuppression it just gets tougher and tougher to fight off sickness. I have no idea how she caught a virus. We are so careful with her. She goes nowhere. We all were masks around her. We shower and change clothes when coming into the house from being out in public. We scrub our hands until they are sore. The kids are so obedient when it comes to taking precautions for Ashley. I love to watch how much they love her by seeing how they know to shower,change, mask, and scrub without being reminded before coming close to her.

I know how dangerous and serious this can be, but I have had a calm and peace inside and all around me today and tonight. I am learning that this is our life and that if we need to visit our hospital daily to take care of our Ashley then that is what we will do. It is just our normal for now and I am really ok with it. I am amazed at how Blake and Allison handle it all. They just tell her good bye and begin to pray. Allie shared with me some of the things she prayed about while I took Ash in yesterday and it blessed me so very much to learn of how strong her faith is. Our family is growing through Ash's struggles like never before and for this part of our journey I am so thankful.

The next few days will more than likely be a little tough on us all, but I know that nothing is out of His hands. If you would remember to pray for our little gherkin and her virus in the up coming days I would be more than grateful. I am praying for a quick turn around that allows us all to remain together as opposed to sending Ash and I away to Dallas or Omaha for an extended visit. I am going to go lay down next to her so I can listen for signs of a "gusher" and be close enough to stay on top of it. Thanks so much for checking in on her. I will get back with you later on today. God Bless. Trish


Into Every Life a little Rain must fall...

and today it fell into Ashley's. What a rough day my little one is having. She is so very nauseated and is vomiting with every movement. My heart aches for her because she feels so weak. Her white count has been depleted and she just feels so crummy. I spoke with our pastor this morning and he tried to describe to me how bad it feels to have no white count and to be going through chemo. I wish I could understand it better, but I have no experience with it firsthand. All I know is that my sweet girl is sick today.

In between the vomiting I saw her pause and look up at the ceiling. It had begun to rain outside and she could hear the rain hitting the skylights above her. She was frozen as she listened to this sound. While watching her I got an idea. Ash has never seen it rain. She has never felt it rain. I decided that today would be the day. I grabbed her backpack and swooped her up in my arms. I placed a mask on her face and grabbed an umbrella and we went outside to experience the storm together. As I watched her eyes light up I tried to imagine what it must feel like to see, hear, feel, and smell a spring rain for the first time. She was enthralled. The breeze was blowing the rain drops up under our umbrella and it was hitting our skin. The smell in the air was so clean. The sound was magnificent as the raindrops hit the top of our umbrella. She was so happy taking it all in. We watched some squirrels running about, and then our eyes fell upon a cardinal playing and bathing in a puddle. How wonderful I thought. I decided it had been way too many years since I had splashed in a puddle so I rolled up my jeans and kicked off my flip flops and away we went. Since Ash couldn't splash for herself I splashed for us both. It was so much fun. I know it sounds so silly, but it was a moment, a memory, that I will cherish forever.

We went in for a little while and then ventured back outside once the storm had ended. This time Ash was laying in her stroller and we went for a walk. After a while I began to hear her coo and make the sweetest noises. I wondered what she was talking about. What could she see that I was missing? I decided to look at the world from her view point. As I laid down on my back I too wanted to begin cooing. The world was so beautiful! All Ash could see was a canopy of trees with their branches blowing in the breeze, a blue sky filled with puffy, white clouds and a few birds flying above. What a wonderful way to see the world. It was so relaxing to lay there and talk to her. I could feel all my stress and all of my worry fading as I became thankful for the moment I was living. Just me and Ash. Outside in the country. Doing nothing important. Just enjoying what God gave us to enjoy everyday.

Today the rain that fell into our lives was nothing short of a blessing. One of the biggest I have had in a few days. I am so grateful to be her mom and to be the one experiencing life along with her. Without her I would have missed out on so much today. It truly is a blessed life I am living.


Deep in My Heart

There are things that I hide deep inside of my heart concerning my sweet Ashley Kate that I speak of to no one else. Not even Dave. I have tried to share with him some of these things, but he does reside in the land of daisies and rainbows and his mind does not allow him to go there. In a way I wish that I could live in this land along with him and that my mind would not allow me to see the things that I see while taking care of my beautiful baby. Tonight as I tuck her to bed these things scream at me as I watch her struggle. There are days when things are worse than others and today just seems to be one of those days.

After my Ashley was born and we were told of the many possible struggles she may have to face in her lifetime I found myself seeking God more than I ever had before. I prayed earnestly that His will be done and accomplished in my little one's life and as the medical community continued to "hit" us with the possible diagnosis' she could be labeled with my prayer became this," Allow her to give and receive love. Let her be happy." That was it. Nothing more. In our own naive way I believe there was a time in her life that we thought she would be fine. All she required was for us to love her. To tell the truth, she is fine. She is happy and she is loved, but as her mommy I am very aware of more and more disabilities and differences that my Ashley has and others do not.

Tonight I go to bed with a heavy heart. A heavy heart that is so full of thanksgiving for her life and her victories,but also burdened with the knowledge that I must continue to seek and find answers that give my sweet baby the best possible life she can have. As I prepare to climb into bed next to my Allie who lives a life filled with health and I snuggle up next to the daughter who can walk, run, jump, climb,speak, sing, communicate, and anything else her little heart desires my heart breaks and my tears fall for my other daughter, my youngest daughter, my sweet Ashley Kate who may never do any of these things. How I wish for her to have the same opportunities that I had always taken for granted in my other children's lives.

It is now my job to not only help her survive, but to live the most fulfilling life possible. I believe in the deepest part of my heart that He has a plan for her, I just have to help her seek it and find it so that she may fulfill not my dreams for her life but His. Deep in my heart I know what I know I am just to afraid to put it out there for the world to see, to label, to judge. They will find out all to soon and so for now I keep these things hidden inside and pray that if it be His will that they might pass over her rather than come to pass in her. Regardless of the outcome she is my daughter, the one I longed for, the one I prayed for, and the one I would give my life for so that she might keep hers. Nothing else matters except for this one thing, she resides deep in my heart and it is there that she will always be.

Texas Address

Several people have requested a Texas address to send things to Ash so after trying to figure out which one to give you I have come up with this one:

Ashley Adams
101 B Woodbine Place
Longview, TX 75601

Thank you so much for all the cards, letters, and gifts you have sent. You are so generous to our little gherkin and we appreciate your thoughtfullness.

Boring? Blessing! Baseball.

My life since the birth of Ashley has never been boring! Everyday has been blessed. It all seems to be connected because of baseball. I know, I know this doesn't make a whole lot of sense to anyone other than me, but I have seen God work in mine and Ashley's life because I went and sat at the ball field to watch my son play. Amazing is all I can say!

The resolution of today's events once again have been connected to that wonderful game that has captured my son's passion and our hearts.

Let me just explain a small piece of the story. Years ago I met a good friend while our sons played baseball together. 3 years after that friendship developed I met another friend as a result of her son playing baseball with my first friends son who no longer played with my son but the new friends son now did. Are you lost yet? Its ok if you are because it only gets better from here. To date neither of my friends sons still play on my son's ball team,but our friedships remain and it is because of these friendships and there connection that I have a beautiful baby girl named Ashley Kate. Enough said. Last spring on the baseball field we met 2 new sets of friends. The meeting of these people would bless us and our Ashley's life time and time again. Both of our new friends from last spring work at a local hospital here in town where our sweet Ashley Kate was rushed to this very afternoon. God has once again used one of these friends that He gave to us through the baseball team to lend a helping hand in Ashley's care and protection. So to make a long story short Ash is ok, her life keeps me on my toes, I am never bored while raising my youngest daughter, we are blessed, blessed, blessed by good friends and their willingness to love our baby, and Baseball? Well, you all know how much this family including our Ashley Kate love an afternoon at the ball park watching our favorite catcher play a game or two or three but hopefully four that ends in a championship.

Ash is now fine. Catastrophy avoided. I sit back in amazement at how through the years God has been working to prepare not only my family but the many others who have played and still play a part in our Ashley's story. To think that Blake would play such a large part in building our family is just a fun piece of trivia. I am glad my life is not boring. I am thankful to know how blessed it is. Baseball, just a tool the Father used to help write her story.

I am praying the evening slows down a bit around here and that me and my girls can work on the puzzle together. Thanks guys for checking in on us. We love hearing from you, and we appreciate the time you spend in prayer for our baby gherkin. Take care. Trish


3...2...1...BLAST OFF!!!!

The day is almost here. Blake has been looking forward to tomorrow since he first found out he would be going to Christian Heritage School last summer. Tomorrow at 5:30am we (Dad and Blake and the rest of the 5th grade class at CHS) will be loading on a bus for the ride down to NASA. He is so excited. It makes me excited to see him and how happy he is. I don't look forward to waking up at 5 am but I do look forward to spending the next two days with my son. Trish just came in and informed me that she packed some "outfits" for me. What is she thinking. All the hard work she did at our house this weekend must have left her a little dehydrated because I am a man and I don't wear "outfits." Tonight when I got home from my seminar in Dallas I went to work ripping out the shower in our master bathroom. I am afraid that things went from bad to worse. I thought we had a minor problem in there but as it turned out the floor and sub floor was completely rotten. I think our move in time back to our house just got pushed back some more. I am still praying that we can find a contractor who would be willing to come in and help us get things back in order. I am not sure just when it happened, but I think my life is completely out of control.

After a long day of hotels, seminars, driving and tearing apart my house I finally got "home" to my parents house and got to see Ash around 9:30pm. She is looking so great to me. I am so proud of who she is and how strong she is. I took a few moments to lay down on my back with her laying on her belly on my chest. I just listened to her grunt and coo and was able to reflect on the incredible drive and determination to live that God has placed in that little soul. I can't begin to imagine how He plans to use her as she grows older. Thank you to each and every one of you who takes your time to check on Ashley and who faithfully prays for her. Please pray for our house and living situation as I think we are getting deeper and deeper at our house and still don't have enough help to get it done anytime soon.

God bless each of you,



This morning as I fixed Al's hair, ironed Blake's clothes, and changed Ash's diaper I suddenly realized that I was surrounded. Not by soldiers, the enemy, or an attack, but by the very things that bring me the most joy in my life. I am surrounded by:

My eleven year old's arms when he walks by and gives me a hug.

My nine year old's smile as she looks at me sitting across from her at the hair salon.

My sweet Ashley Kate's gaze as I tiptoe into the room to find that she has been awake and waiting on me to arrive.

My husband's fingers as he grabs hold of my hand to sleep.

My community of friend's who have welcomed us home.

My prayer warriors thanksgivings that have gone up to the throne of grace.

My beloved pine trees that line the streets of our home town.

My favorite flowers that have now opened up along the roadways to welcome the spring.

My everyday responsibilities that make up my life that I have had to let go of over the last six months. They are back and I am enjoying them all! Things like picking up toys, folding laundry, signing homework, studying spelling lists, running errands, and the like.

My blessings.

My Father's love.

I am so grateful to have found myself surrounded this morning. The house is quiet as Ashley naps and the family has gone off to church. I am now sitting here enjoying the realization that He has allowed me to become surrounded with all that He has for me and I welcome the feeling of knowing that there is no way out. What an amazing, incredible, wonderful life I have been given. Thank you Father for surrounding me !


It won't be long...

...until we move back into our little yellow house? Oh, I wish. No. It won't be long until we have worn out our welcome. I am afraid that after living with my in-laws for one full week that we are beginning to see signs of the strain it is putting on them. Don't misunderstand me. I have wonderful in-laws, but they haven't had kids in their home in 15 years and I don't think this is what they had in mind during these years.

I have really great kids, but the problem with them is that they are kids. Kids make messes, make too many drinks that they don't finish, leave toys and things strewn about, don't behave like adults, aren't as responsible as adults, and they leave their towels on the floor in the bathroom. Now at my house these things don't bother me. I learned long ago that I would rather spend my time enjoying my years with these wonderful little people while they are little as opposed to keeping my house spotless all the time. So what if a towel lays on the floor for an hour or so. Is it really going to cause the world to end? Not my world, but when you are living in someone else's home it just might. I am a nervous wreck trying to keep everything we have out of the way and picked up as much as possible, but the truth is there is just no space for our things. Nothing has been said to us about the inconvenience our little family is causing, but I'm not blind. When your not used to having kids around your just not used to having kids around.

Anyway, I am more than thankful that my precious in-laws have allowed us to stay in their home while ours is in pieces. They are going to great lengths to make us feel welcome, but its just not the same. I need to take my kids to my house and allow them to see them occasionally when they choose to as opposed to having them under foot 24/7.

One of the best things about us staying here with them is that they get some great bonding time with Ash. She is loving the many laps to choose from when she feels like being rocked. She is getting to know them more and more each day and that is a blessing for all involved. I am thankful for the purpose this time is serving in our lives. I continue to learn lessons on a daily basis, and I suppose as long as I am willing to learn and grow He will continue to provide the opportunity to make me into what He would like for me to be.

Well I can hear my Ashley Kate becoming rowdy in the next room and I need to go and quiet her before she wakes up her grandparents. Just another thing we could add to our list of inconveniencing them. Thanks for checking on the gherkin tonight. I continue to thank God for those of you who continue to stick it out with us. My prayer is that someday I will be able to title a post with the word REMISSION in the title so that we can all rejoice together. You mean so very much to us. Good night and may God bless you and your families. Trish

Peace Vs. Panic

I am assuming that at some point in Ashley's life I will reach the point in her recovery that peace will overcome the panic. Am I just being naive? I desperately pray that life will just take on a normalcy where I can wake up each morning and just live without my heart racing to the point of making me feel as though I am going to pass out. As you have already figured out, I am not yet to that point.

Today I took my Allison out for a few hours of just "girl" time. We had a set of Gym Bucks calling our name that had to spent by tomorrow and our Ashley has outgrown the majority of her clothing. P.J.s we have plenty, but now that she is out of the hospital the little one requires "real" clothes for the "real" world. I mean her world which basically consists of sitting in Grandma's house and going to doctors appointments with the occasional walk outside in the spring air. So off to Tyler Al and I journeyed leaving Ash in the exceptional care of 2 of her grandmothers. Allison had a list of things she needed as well. Like flip flops in every color, sand art, and band aids. She also got a new haircut(which looks amazing!). Anyway, we were sitting in Tyler enjoying a little lunch and decided to call to check on our Ashley for the 5th or 6 th time. After talking to Blake he told me that grandma would like to speak with me. O.k. nothing out of the ordinary, until she shared with me that Ashley was making a funny sound as she slept. Uh,oh. My Ashley is SO predictable. Whenever she makes this "grunting" sound in her sleep, we know something is coming on. It usually begins about 24 hours prior to her becoming very, very, sick. Grandma had actually been visiting in Omaha on one occasion when this was the case, so she knew she needed to let me know that Ash was making this sound. Now comes the panic. I could feel my heart racing and my head swirling with a thousand different thoughts all at the same time. I knew I would like to get back to grandmas as fast as I could, but I did not need to put Allie into a panic along with me. How was I going to pull of the fastest return trip in the history of the world without placing my Allison in danger or placing concern in her heart?

As I traveled the back roads from Tyler to home I prayed and prayed and prayed. Please God let this be nothing. Please get us back quickly so I could make a decision. Please, please, please. Between my prayers I was busy singing parts of Disney songs that Allison had lined up to be mine and trying to not let her know how concerned I was about her sister. At some point along the road home my panic began to be overcome with peace. I kept telling myself, this can't be anything worse than what we have already been through. Shes tough. She can handle whatever is going on. I will pick her up, head over to Dallas, have Dave meet me at the hospital, and tackle whatever lays in store for her. No big deal. We can do this. Upon arriving home and examining her I could find no signs of trouble. She was no longer "grunting". She was sleeping peacefully as I looked over every single part of her and every single piece of anything coming out of her. She's fine. Her color is good. No fever. No signs of distress. She actually looks better than I have ever seen her look. My heart slowed back into its normal rhythm as I talked with my mother in law about how Ash had been for the whole morning. Just tired. Weak and sleepy. Comfortable but clammy. All normal behaviors post chemo treatments for Ash. She made the "grunting" sounds for approx. 45 minutes, but woke smiling as we talked. I think she is ok, and now I am trying to figure out how to just experience peace without the panic the next time I get a call. I have no idea when I will accomplish this. I just know that I need to.

I am now at the house ready to dig in and do a little more demolishing. I'm pretty good at this. Maybe its all the stress that is coming out of the end of my hammer? Maybe I really was cut out to be a contractor? Either way, its kind of fun so here I go again. I will talk to you guys later(if I am still in one piece). Take care. Trish


Just Us Girls

Tonight we are on our own. Just me, Allison, and Ashley. It is just us girls. Dave left for a conference that had been on the books for months now (although I tried and tried to get him not to go) and Blake is at a friends camping out for the night. So that leaves me and my girls. Can I share with you how very fun it is to say that, "My girls". I love the way that sounds. My sister Toni has always been the one we referred to when talking about "the girls", but now I get to share that phrase with her. God has given me above and beyond what my heart desired. To be honest with you it makes me a little sad to be apart from Dave and Blake. We have officially spent one week together since coming home from Nebraska and although it has had some difficult and stressful moments(all concerning the remodel) it has been nothing less than a dream come true to be a family again.

Speaking of dreams, last night I dreamt of my Ashley Kate learning to walk. I know that most if not all 19months old have already mastered the skill of walking, but my little one has not. In my dream it was the sweetest moment. She was holding on to my hands and taking her first steps. The look on her face was priceless. The dream was so very real to me I woke almost believing that it had actually happened. I don't know if she will ever be able to walk. I do dream about it, hope for it, wish for it, and pray for it to happen, but the reality of her life is that she may never stand or take a step on her own. I can't quite figure out why she isn't able to use her little legs. No one has ever really addressed the problem. Ash has had far too many other more pressing issues than standing or walking, but it is something I hope to help her figure out to do in the future. To say that it is not difficult to be on the outside of the hospital where I see others toddling all around me would be lying, but honestly if all she ever is capable of is sitting perched on my right arm then I will be thankful that she is here with me to "perch". Whether or not she can walk or run she will be all that she was created to be. She brings me such joy with every single moment that I spend with her. I can only try to imagine the joy she must bring to the Father's heart as He looks down on her. What an amazing little person she is. She is sitting more and more on her own. Today she actually sat on a quilt surrounded by her toys as I walked away and sat behind her on the couch. She never even realized I had let go of her and that she was there alone. She busied herself exploring her things and once she was tired she allowed herself to fall back on her pillow and drifted off to sleep. How proud I was that she can sit there unattended. My heart was bursting with gratitude. I can't imagine how it will feel if she is ever able to stand and take a step.

Well, I think I am going to go crawl into bed next to my Allison. It is so sweet to be able to cuddle and hold her. The smell of her long hair just drifts into my soul. I watched her tonight and admired her beauty and the growth I have seen in her during my absence. She has matured into a precious young lady whom I love with my whole heart. Still young enough to be silly, but old enough to want to be taken seriously. What a wonderful age. We have planned a little shopping trip together tomorrow just as soon as I dismantel some moldings and remove a couple of doors. I managed to escape injury tonight and I didn't even break a nail. To tell you the truth I was more worried about that than ending up with stitches, but I came through my adventure with all ten fingers still manicured and looking good. God is so good to me. Good night guys. I will talk to you all tomorrow. Trish

Planning and Playing Contractor

So living in the country is not for me! The computer service is not up to speed and I have not been able to use it all day. How frustrating it is to wait and wait and wait on something when you are so used to just pressing a button and up pops Ashley's Journal. Anyway, I am at the house now to put in a couple of hours of work and I have the opportunity to post. Let me say how thankful I am that we live in town.

Ash looks remarkably good today. She is weak and has spent the majority of the day resting, but the moments that she feels like opening her little eyes are full of joy and smiles. She has the orneriest grin and that sparkle in her eyes that tells you once she feels good enough to figure out how to get mobile we had better all watch out. I can just see her little mind working. I am so glad that she has not been vomitting. This is the first round of treatment that we have avoided the nausea. I think thats progress! I can not express how wonderful it is to have all 3 kids together. I just love watching the way she reacts to Blake and Allie. It is so much fun to see what they will do just to make their baby sister smile. I really am loving this time in our lives. Many pieces of our life seem to be in shambles(like the bathrooms), but one thing that is in tact is the joy and satisfaction we get out of being all here in Texas together. Yesterday as I was driving through town I shared with Blake just how unreal it all seems. I was just so caught off gaurd with His timing. I did not expect to be allowed to come home for several more months, but what a wonderful surprise He had in store for us. I am so, so thankful to be here!

So for most of today I have been running between flooring stores, Home Depots, and Lowes(not my favorite places to hang out). I have been busy buying supplies, bathtubs, doors, moldings, flooring, and any thing else I can think of needing to put into these two rooms. We have tried and tried to find a contractor to do the work for us because there are just not enough hours in the day once the office closes. Have you ever tried to get a hold of a contractor? It is not easy. They are all too busy to take on our little bathroom projects. We actuallly had one come out and tell us he would bring a crew over to begin on Thursday but he never actually showed up and he never returned our call. I tried to give him the benefit of the doubt and think maybe he would call today or perhaps show up to work, but he didn't. I wish he would have told us he just couldn't take it on or anything other than saying I will be here tomorrow and then deciding not to show up. We are in a bind and although it seems impossible to me at this point I am just trusting that God knew well in advance of sending us home that we would be facing these issues. So what if we have to live with Grandma and Graypa for the next 6 months? At least we are all there together. Although I don't think my father in law is going to want us living there that long. I have called my brother in law to come in next week and he is going to be able to put in 4 full days of work. I know he is busy and this will be time spent away from his family so I really appreciate his willingness to come and work for us. He will be making the 6 hour trip in on Tuesday evening after he finishes at his job.

Ash is busy hanging out with Grandma and Allison tonight as I plan to go knock out some of the tiles in our master bathroom. I really have NO idea what I am doing, so I hope I don't end up in the emergency room. Just think I never thought I had what it took to become skilled in the nursing profession, but look what God had in store for me. Now I guess He would like me to add the title of Contractor to my list of talents. It really is kind of exciting to see what I am capable of doing. At least I think this will be exciting? As long as I don't come out of there bleeding, I will be fine. Thanks for checking on our little pickle. Your time here does not go unnoticed or unappreciated. I pray you are all able to enjoy any weekend projects you have in store for your families and that most of all you just get to enjoy spending it together. I will post later as long as I haven't cut off my fingers or anything catastrophic like that. Take care ,Trish



They truly are new every morning. I just love knowing that. God was faithful and delivered us traveling mercies today. We have just arrived home, given meds to Ash, and settled her in with toys all around because she shows NO signs of being as tired as Nan and I are after today. How thankful I am to have made it there and back safely. I tell you after traveling that road between Longview and Dallas for many, many months of Ashley's life I think I could do it with my eyes closed. Oh yeah, I believe I have! Honestly it is amazing to me how smoothly it always goes. I never want to take for granted that it is His protective hand that guides us time and time again on such busy highways. Today was a very long day, but I would gladly travel the highways of Texas a thousand times over as long as it meant that we would be coming home at the end of the day.

Ash did remarkably well today. I would have to say that this was her best chemo day so far. The first hour of the infusion was the most difficult as she adjusted to the feeling of the medicine going in. She shook, screamed, sweat, and disrupted the entire floor, but eventually she began to settle and finally fell asleep. After resting the next hour she woke to play on and off throughout the day. I took some very sweet pictures but I have no idea how to get them on to the computer that I am currently using. I hope that Dave might have some time tomorrow before leaving for his conference to help me. I would love for you all to see how good she is looking. I am really proud of how well she did today. She is such a little fighter.

If you ever need a good dose of perspective or if you are having a tough time counting your blessings I would encourage you to take a walk through the halls of a pediatric oncology floor. We were definitely not the minority today. Our Ashley was surrounded by many, many other little ones struggling in their own fights to beat a disease called cancer. One thing I learned today is that you truly can be a princess without any hair. It doesn't really matter. I saw several beautiful, tiny princesses wearing pink and invinsible crowns today. My heart melted as I watched them cry, hurt, struggle not to get sick, and cling to their mommies just as my Ashley clings on to me. How beautiful they all were. These precious children know what life is all about. They are not dying with cancer, they have figured out how to live with cancer. They made me proud. As I watched my Ashley laugh and giggle at her toys and books I felt so blessed to be her mom. Even though she was weak and feeling yucky she still managed to enjoy as much of her day as she could. I love this little one and I pray that I could only become as brave as my daughter. How blessed we are to have her to love.

I just wanted to touch base and let you all know how our day went. We did make it home to grandma's house safely and I am now going to go take a little "nap" as I listen to my sweet Ashley Kate bang on her piano into the wee morning hours. Silly girl doesn't even know she is supposed to be sleeping. Thank you for loving her today. Thank you for praying her through another tough one. Thank you for caring enough to read her journal. Good night and God Bless you all. Trish


All but the Kitchen Sink

O.K. I have been consumed this evening with packing. I feel like I am going to leave something vital to Ash's care, or not take enough ostomy supplies, or run out of clothes and blankets due to the historical past events that Ash has had while receiving chemo. Come to think of it I may go in and pack an extra set of clothes for myself just in case( I'm not quite as cute as Dave is when it comes to modeling hospital gowns). I just hope that I have thought of everything. I have two complete diaper bags(the large ones) packed to the brims with meds, supplies, clothing, and blankets. I have yet to figure out where to fit her toys, books, and DVD player. The hours it takes to get her infusion are not fun so I try to bring enough to occupy her mind. Sometimes all she wants to do is be held, but sure enough if I fail to prepare I am gonna wish I had.

The last two nights I have spent the hour before bedtime playing some type of board game with the older kids, but tonight I had to get things together. I am feeling guilty because I didn't just hang out with them. I wish there were a couple of me on days like today(although I am quite SURE Dave is thankful that there is not!) I just had to get things ready for tomorrow's trip because I need to be on the road by 6:00a.m. Not only did I need to get Ash's things ready but I also wanted to make sure that Blake and Allie's things were together for school and practice too. Anyway, I hope to make it up to them this weekend while there Dad is gone at a conference. Maybe we can go find something fun to do together while Ash is resting up from her treatment. Perhaps we will just sit around and work a puzzle together and bake some of Blake's favorite chocolate chip cookies. Whatever we do I am looking forward to it. I just love being with those two.

I am praying that things go well for our little Ashley tomorrow. She seems to be a little more comfortable tonight. Her blisters are still hanging around, but they are not spreading and they do not seem to cause her any discomfort. While I type she and her daddy have fallen asleep while watching baby Einstein. I know she prefers a good ole episode of Blues Clues, but the child is becoming addicted to that little blue cartoon. She got a good, bubbly bath tonight and she smells delicious. I can smell that little pickle when I step into the room. I just love seeing her all comfy and cuddly in her daddy's arms. How good that must feel to her after being away from him for so long.

Tomorrow is a big day. New doctors, new people, new offices, new routine, new things all around. Of course it always makes me nervous to have to start "cold". I really became spoiled with our team and our nurses in Nebraska. It always felt as though I was there hanging out with friends. I am sure we will make new friends and the faces will soon become familiar to us, but tomorrow we will start over. Please pray for Ashley. I have come so dependant on your prayers and it just seems so odd for me not to ask. I hope you don't mind me asking now that we are home. I would truly appreciate them. I pray that you all rest well and wake to find the beauty that surrounds you. Take care and may God bless you and your families. Trish

"Wednesdays are my favorite!"

On the morning drive to school we usually take advantage of that time with the kids in the car to touch base with them, pray with them, and try to get a little insight into what they may be going through or what type of things may be on their young hearts. This morning I asked them this question,"Anything exciting going on in school today?" Allison was quick to answer, "Oh, Yes! Wednesdays are my favorite!" Wow, I thought to myself. I never knew Wednesdays were her favorite. I asked her why. She began to give me a run through of the days schedule making sure to list every single period and what they were learning in that class. She continued to let more and more information bubble out of her with such an excitement that I found myself smiling. To be honest with you it was more information than I could grasp on to at this point in my life with the lack of sleep I am getting, but by the end of her description I decided that Wednesdays were my favorite too. I still never figured out what made them so special to her, but since she loves them that much so do I. Blake was absorbed in a book that he is trying to finish so he didn't have much to add except for the daily countdown to the NASA Trip he and his dad are taking with his classmates. "Only 5 more days." Thats all he had to say without even telling us what he was talking about. He didn't have to. We knew what the countdown was all about.

Last night I told the kids that Ash and I would be gone all day tomorrow for her chemotherapy and that we were thinking about spending the night in Dallas on Sunday so we didn't have to get up and start driving by 3:30 for Monday's appointment. Knowing that Dad and Blake would be going to Houston on Monday Allie began to get very nervous. She isn't thrilled with the idea of Ash and I leaving for an overnight trip to the hospital. I think it is just too soon for her to let us go again, so I have been considering taking her out of school on Monday so that she can accompany me and Ash to Dallas. Maybe just by taking her along she will feel more comfortable with the weekly trips we will be making over there. I am not sure if it would be a good idea to leave her without Dave or I so soon after just coming home from Omaha. I don't know, we are still trying to figure out what is best for her. It might be kinda nice to just have us 3 girls traveling together for the day. Just something I am praying about.

Ash is struggling today. She is so fussy and uncomfortable. She isn't running a fever. She has no signs or symptoms other than sweating and crying. I can just tell she doesn't feel well. I am thinking perhaps it is just because her defense system is down right now. I have not been able to put her down all day. She just cries and cries if I am not holding her. I wish I knew what to do to make her feel better. Perhaps she will be able to smile a little when her daddy comes home from the office. I have run into to town to take Al to cheer practice and since Ash can't come out of the house she is now resting next to her Nan. Hopefully she will be feeling better after her nap. Tomorrow is the second infusion of our second cycle. We are now in week number 5 of our 18 week course. Next week we will be 1/3 of the way there. Yeah for Ash! I can't wait for this to be over for her.

We are still searching for a contractor to hire to finish our remodel. Dave is working so hard at the office and putting in such long hours that he just doesn't have enough time in the day to work on the bathrooms. We still have no running water in the kitchen half of the house and we are waiting on the plumber to find time in his schedule to come out and repair the water line. Sometimes life is really crazy, but the great thing about our life is that we are doing this all together now. Thank you, Father for allowing Ashley and I to move "home"(grandma's home) to be with our family. We are so grateful to be back in Texas so close to our little yellow house. I know that the remodel and repairs will eventually be done, and since there is nothing I can do about speeding those things up I am just having to laugh at the situation we find ourselves in. God is still blessing us daily and we are still parenting 3 of the best kids in the world. It just doesn't get any better than this!


Just being Normal

Let me share with you how wonderful it feels to just be normal again. I will take a boring old, nothing exciting, no shocking news kind of day over some of the more packed full ones that I have lived with my Ashley during the past six months. Today was just a getting back to normal day. We did normal things like, waking the kids up to shower, driving them to school, running forgotten belongings back up to the school, cleaning bedrooms, fielding phone calls coming from all sorts of directions, searching for contractors, plumbers, air conditioner men and the like, running to the office, picking up kids from school, managing home work, and then the finale; sitting down together for dinner around the table and catching up with everybody. How great it was to sit down and enjoy dinner with my family as opposed to my frozen burrito and bag of popcorn from the convenience store down stairs at the hospital. Before dinner our Allison took the time to create name cards for everyone's place at the dinner table. I think she did it mostly because she is very glad I am home and she wants to make sure no one else gets to sit next me. Each card had a personalized printing of the person's name and some sort of design on it. Blake's had a baseball, Allison's a flower, Ashley's a heart with a flower in it, etc. etc. When Graypa sat down and saw his name plate and the line that was drawn under his name Allie looked at him and said, "What? Its not like you are boring or anything. That's all I could come up with." That silly girl. She continues to crack me up with her silliness. Anyway, I just found myself enjoying the normalcy and the company that I am allowed to share with this group of people.

Before dinner I received a call from the transplant team. It is never a good feeling when you receive a message to call them. Especially when they take the time to call you after hours. So with fear and trembling I returned the call. They are concerned about Ashley's white blood cell count. There doesn't really seem to be one. She has hit what is called the "nadir" period and this means that for a few days she actually has very little defense against germs or disease. They wanted to make sure that we had already been in contact with an oncologist and that we were scheduled to see them before long. They reminded me to be very, very careful with her, to wear masks around her, and not to take her out anywhere. I assured them we would all place out masks on, that we were all showering and changing clothes as we entered the house before touching her, and that she was not going out anywhere. What a scary time this happens to be in our Ashley's story. She looks really great, but she is so fragile. We are actually scheduled for an oncology appointment this Thursday in Dallas and her chemo treatment is to follow that. I expect it to be a very long day, but I am praying we can beat the 16 hour day we spent getting treatment last week. I suppose they will have to decide if it is safe to run the chemo with her counts so low or not. On Monday morning we will be back in Dallas to receive her monthly Cytogam infusion. They made this appointment for me at 7:45a.m. I think that is insane! I am hoping to remind them that I live 2 and 1/2 hours away and that it makes for a really long day when I have to be up and driving by 3:30. Surely they will see how unreasonable this is. That infusion will be followed by an appointment with our GI doctors in Dallas. That should be kind of fun because they haven't seen Ash since we left in August and she only weighed 12lbs at that time. I am looking forward to that visit.

Well, all things are now quiet here at Grandmas house and I have been given the opportunity to sneak in and kiss those precious foreheads. I love just being normal. I am going to go and take my opportunity to stand and linger over each of my "babies" for as long as it feels good(I may be standing there until morning), but the blessing is that I am "home" and that I can. Thank you all for praying for us today. I pray that each of you are blessed as you sleep and that each of you were given the opportunity to kiss you own sweet "babies" good night. Take care. Trish

A New Season

Oh how I love the change of seasons. I used to believe that the autumn was my favorite time of year, but as I get older(and older and older, I am really feeling my age this week!) I have found that I love of all of them. Tomorrow is the first day of Spring. I can feel it as I walk my sweet Ashley Kate outside. I can smell the scents of wisteria in the trees. I can hear the birds singing so sweetly, and I can feel the warm breeze as it comes across mine and Ashley's faces. She got so tickled as the wind blew across those puffy cheeks today. What a joy it has been to have the freedom to walk her outside until she drifts off to sleep.

Along with the beauty of the spring and the promised changes that will accompany it I am feeling the beauty of the changes that are occurring in our family. This is a new chapter in Ashley's story and a new season of sorts in mine and David's lives. We are excited about the change of season. Our family has endured a very hard "winter" and now we are ready to embrace the coming of "spring". New life, new growth. How promising that is to me during this time. As I came to the house this morning to put in a couple of hours of work I was privileged to pause long enough and watch a robin hop along the roof collecting materials for her nest. She knew that she had a job and she was willingly preparing for it. The springtime brings a promise of new life to her and she was happily preparing her home for the little eggs that would be placed in her care. How encouraged I was as I watched her work so very hard. Hard work that was sure to make a difference. Maybe not a difference to all, but such a difference to the ones she would be charged with caring for. It was such important work. This is how I am feeling today. What a job I have before me. Although it seems a little(o.k. a lot overwhelming) it is a task that I embrace with a heart of thanksgiving. How privileged I am to have had 3 beautiful little ones placed in my care. I gladly clean closets, and floors, and drawers, and bedrooms, and dust, and construction mess, and laundry and anything else I find that has moved into our home over the past 6 months, because in the end it will make a difference. Not to all, but to the ones who matter the most to me. Please forgive me if I appeared ungrateful while I was feeling overwhelmed. God knew my heart and that is what matters the most.

As I plan to embrace this new season of our lives I want to tell each one who comes to this story what a difference you are making. I honestly mean it when I say to you that I love this "blogging" family that He has brought to me through Ashley's journal. You pray for me when I am hurting, you encourage me when I am tired, you help me continue on when what my flesh feels like doing is retreating. How blessed I am to know all of you. I am a better person because of knowing this group of people.

Ashley is happy. Happier than I have ever seen her. She loves life and that is all that matters. Sure she still struggles, and she still experiences pain, but the smile that so quickly follows tells me that it has been SO worth it. I want you all to know her. To know the little one whom you have allowed to enter into your hearts, your families, your lives. If you only ever get to know her through this journal then that it is enough reason for me to continue on. I am thankful for your time spent here and your time spent in prayer for her and for her mom who fails to be perfect, but strives to do the best job I can. God Bless each of you and your amazing families. Love, Trish


How I wish...

How I wish I were numb. Not able to feel the hurt or the sting of another's words. How I wish I could pretend that it didn't matter to me what other's thought or said about me and my family. How I wish I could take this journal back from the world and share it only with those it was originally started for. It was written and designed as a source of information and insight for our family. For those people in this world who we knew we could trust with our raw emotion, our brokenness, our baby and her fight to live. I never expected to share my heart the good parts or the bad, the beautiful parts or the ugly with the entire world. It just happened. As it unfolded I stepped back and decided I would allow Him to use it in any way that He chose. How I wish that this had never been opened up to those with anger, bitterness, hatefullness, unkind words, ill will, or judgemental tendicies. How I wish I could look at Him and say, " give it all back. Give it back to Dave and I and don't ever allow it to go anywhere else." I won't say that. I don't have the right to ask Him to do this. He gave our baby to us and how dare I try and be selfish with her story and with her life. How I wish other people and their opinions did not hurt so very bad.

How I wish that I could walk this path and never stumble. How I wish that I lived this part of my life flawlessly. How I wish that I could do this on my own, but one thing HE has taught me is that we were never created to live this life alone. How I wish I could re write the pages of this journal, the ugly pages, and make it into something beautiful and perfect, but that would make me dishonest. One thing I refuse to be is a liar. I will not pretend that this is easy. I will not look at another transplant family and tell them that all will be fine, things will be perfect, their lives will end up happily ever after, and their child will grow up to a ripe old age without any illness, set backs, or surprises. That is not the truth. The truth of this journey is found in the pages of her story. Blessings abound, strength is given, help is there, support is just a prayer away, miracles lay around every corner, His presence is made know if you are searching, your tears are collected by the very one who created your child, but IT IS NOT EASY. THERE IS NOT ALWAYS A HAPPY ENDING. IT WILL BE HARD. REAL LIFE AND THE WORLD AROUND YOU REFUSE TO STOP JUST BECAUSE YOU ARE HURTING, JUST BECAUSE YOUR VERY SOUL, YOUR PRECIOUS BABY IS DYING.

How I wish I had it all figured out and how I wish I could erase the moments when I fall because of my weaknesses. How I wish I could make other people kinder and more understanding. How I wish I could make "some" people realize that I would never say an unkind, hateful, bitter, mean spirited thing to you as you opened up your heart to the world. How I wish I could make you like me a little more. How I wish you had the desire to beome my friend, because I think you would find out that I know I am blessed and I know my little Ashley is a miracle in the making. How I wish I had done a better job to make you see my heart. My true self.

How I wish it didn't sting and make me cry and how I wish my precious Allie did not have to walk in and catch me reading the very words that broke me. Now I am wishing that I had never done this because today your words not only hurt me but you hurt my nine year old daughter who wants to know why you would want to make me cry. How I wish I could rewind today and never turn on this computer to allow you to interfere in my daughter's world.

How I wish I had read the text book, the one that prepared me for all of this, a little more. I know that He will heal my hurt and He will give me the strength to pull this part of my life off. That is one thing I don't have to wish for, because I know He is faithfull.

The Best Part of My Day

We made it home around 3:30 this morning with all three kids snoring in their seat belts. How unreal it was realizing we were all together traveling back toward our hometown. The night was a rough one for me as I snuck into the house (while all of the kids were still sleeping) to retrieve uniforms and backpacks for school. I don't know what I was expecting,but let me just share with you that I finally had my breakdown. I could not believe the state my home was in. I could not believe that my sweet family was trying to live in this place. I cried and cried and cried. I think it was the mess, the remodel, the piled high laundry, the dirty kitchen(due to no running water, the clutter, the dust, the in ability to safely walk through any room, but mostly the fatigue(emotional and physical) that caused me to run screaming from my home. I drove the kids to my in-laws, tucked them all in bed, cleaned up Ash's ostomy mess, and left them in the watchful eye of their grandmothers so that I could return to our house and try to make some sense out of it all. I worked from 4:30 until 6:00 trying to locate enough clean pieces of clothing to put together a uniform that would meet dress code for the kids. I moved, I cried, I shifted, I cried, I swept, I cried until it was time to return to my in-laws in order to wake the kids and get them ready for school. I drove them to school and then went to take care of my Ashley Kate. Throughout the day I tried to get a grip on my emotional state. I tried to reason with myself that all of this was not a big deal. I tried to concentrate on the miracle of my beautiful baby and that we were finally home. I tried. Even though I am counting my blessings that continue to fall all over me and surround me, the reality of my life is this: MY HOUSE, OUR HOME, is in shambles. We have to get some work done on it and get it done fast! My wonderful husband is working non stop at the office and then on the remodel and he is exhausted. I don't know that he will be able to keep up this pace. I have decided to spend a few hours everyday while my mom cares for Ash trying to fix this place and turn it back onto the precious home I left six months ago. Trust me when I tell you that I believe with my whole heart and my whole life that God knew what I was walking into, but the shock of it all combined with my exhaustion almost broke me in the early morning hours. Now that I have settled down, I have formed a plan in my mind between running Ash's meds, appointments, pumps, and playtime to get a grip on this house that she can't even enter at this point and to make it all good again.

Now to share with you all the best part of my day. Can you guess what it was? Let me tell you. It was the CARPOOL line out in front of MY children's school. There I was when it hit me. I had been waiting all day to GET to sit in that line and watch those two amazing kiddos come running to meet ME in our car. What a great feeling. Their eyes lit up when they saw me there. I asked them if they knew I was coming to get them or not and Blake said, "I knew you wouldn't miss out on this on your first day home. I just knew it!" Allie said, " I had no idea who was coming, because it is always somebody different, and I didn't even remember it could be you." We promptly caught up on all the days events and ran to Chick- fil- a for an after school snack. What a great life we are living.

I am now going to go put in a couple of hours work in this place that used to be our home, before we return to grandma's house for dinner and to play with our baby gherkin. By the way, did we forget to mention that God brought our little one home and now we are all together again? I really am living a blessed life. Talk to you all later tonight. Love, Trish


Finally on our way HOME

We have just walked off of the ball field. Yes, I know that it is 10:30p.m., but when your a Tarheel these are the hours you keep. Our boys did a phenominal job today. We came up short by one run in the last inning in the championship game tonight. After battling through 4 games today our guys walked away as the runners up. What a blessing it was to have been here to watch them play. Our Blake did come through with a home run along with a few other of his team mates and I couldn't be prouder of the way he played the game. We are now loading up all of Ash's things and we are fixing to head on home to Longview. Well, Dave and Blake will go home to our house and all of us girls will go to my in-laws until our remodel is complete.

Ash still has the three blisters around her mic-key button, but I am feeling better after reading Gwens( sweet Ivey's mommy) comment. I am going to try the Mylanta around it first thing in the morning. I pray this will be a simple solution. Other than the blisters our Ashley Kate looks great. She is laughing, cooing, playing, and loving her life. I am so thrilled to have her back with her brother and sister. As I was watching Blake play ball during the first game this morning I turned around to see the most beautiful 9 year old girl walking toward me. My heart jumped with joy and I hugged and squeezed that young lady until she squirmed away from me. It felt so good to know that we would all be together again.

I am feeling a little overwhelmed when I think of all the "figuring things out" I have to do tomorrow, but underneath that feeling I only feel gratitude. I know that after a few days I will settle into the guest room and get some kind of a routine down for my Ashley. I will have to drop her labs off at the hospital in the morning and then I will begin to make all of her appointments for the week. All I know at this time is that she will see the pediatric oncologist at Children's Hospital in Dallas on Thursday morning and then she will get her chemotherapy. If she does well and is tolerating it then we will travel back home to Longview that evening.

Although we are feeling very tired at this point in our lives, we are more than grateful to find ourselves in this place at this time. What a long path it has been to get here. We are praying that our Ashley will thrive in her own environment and that this cancer will soon be a thing of the past for her. Dave and I are looking forward to raising all three of these amazing children to find their place and their purpose in this world. I believe that the Father has big plans for them and I want them to know how important they are to Him. What an exciting task that He has given to us. We are more than blessed.

Thank you all for your patience with us during this time. I know it is taking us a while to make it home to Longview, but once we get there I will post and update on a more regular basis. I so appreciate all of your prayers for us during this time. I know that you were brought into our lives and into Ashley's story not by chance but for a reason. You have all blessed me beyond words with your faithfullness and with your friendships. I do thank God for you. Good night and God bless you and your families. Trish

Small request

Ash woke up and needed an ostomy change around 4:30 this morning. All I can say is that I have learned to do them with my eyes closed and it is a good thing. As I was cleaning her up I noticed 3 small blisters on the skin around her Mic-key button. This is a little concerning to me. I have never seen a blister on her before. With the high dose steroids that Ash is currently on during her chemotherapy treatments her body has a tough time healing itself from cuts, bruises, blisters, etc. I am not sure where the blisters came from. I am running possible causes through my mind but regardless of what caused them they are a source of concern to me. If they were to open and not heal then we have a source for potential infection which could very likely lead us right back into the hospital. She has no fever, no redness, no fussiness, so symptoms of becoming sick. I wonder if it is some type of reaction to one of her medicines, although she has not started any new ones lately. I wonder if perhaps her clothes rubbed against her under the strap of her car seat as we traveled home, although I did get her out of the seat almost every hour on the trip. I wonder if it is something bigger, more dangerous going on? I hope not. Would you please join me as I pray that the blisters will just disappear. I am praying that they might just go down on their own and that they would go no further. I am praying that God protects her and that when she wakes today they might not be there. I am just praying because at this point something as small as a blister on her tummy could be the cause of something very large to develop. I just need them to go away. They don't seem to be causing her any discomfort. Why are they there? Only God knows so I am trusting that He might just remedy this situation for me. Thanks for praying for her along with me. I pray you have a Sunday morning full of blessing. Trish


A fight worth fighting

Wow, I am actually sitting in a hotel room inside the great state of TEXAS! We actually crossed the state line around 11:30 this morning. This is so unreal. I have been reminding myself throughout the day that this really is happening. We really are on our way home and we really are all going to be together very, very soon.

During the journey home I spent a lot of time thinking. As I replayed the many events in her life, the struggles, the obstacles, the fight I realized that a victory can not come without a fight. You must first be in the fight to enjoy the victory and although my Ashley is still fighting against many things I can't help but find joy in the many victories she has experienced so far. There have been days and nights when I was not sure if the fight would end in victory or defeat, but during those times I clearly remember that she was not left to fight alone. He has been there during each and every part of the fight.

Today I had the privelage( and I mean it when I say it is a privelage that I will no longer take for granted) of watching my son Blake and our beloved Tarheels play baseball. Oh, how I enjoyed the sights and the sounds of the ballpark. It was so wonderful to know that my Blake could look out at the crowd and know that I was there. Ash and I had made it. She had won part of her fight and she was going to come home. Although the Tarheels did not do as well as we would have liked my Blake loved every minute of it, and I loved being there to talk to him about it after each game. I asked Blake if he was disappointed about the score and he replied, "Mom, I never think about the score I am just there to play the game." I told him how proud I was of the way he had played and that I loved the "heart" that he shows while he is playing. This was his reply, "Mom, the Tarheels have a lot of heart but I think that Ashley has a whole lot more heart than all of us. She is still here, and she is still fighting even though it has been really hard for her. She just wanted to come home so she kept on going even when she got tired. If anyone has heart it is her." We continued to talk about the games, the plays, the mistakes, and the lessons learned out there on the field. We talked about how there will always be something to be learned and he shared with me how he likes to listen to coach talk because he always picks up something new about the game. Even though we were talking about baseball my mind continued to think about the lessons we have learned through Ashley's journey. It really has been incredible to watch, to live, to experience. At one point I asked Blake if he felt like this time in our lives had made us stronger or if had made him feel like we were falling apart and the passion in his voice when he answered made me proud of the way we had traveled so far. He was convinced that, "our family is stronger than we have ever been." Have I ever told you how much I love this kid? I really do.

Ashley's face lit up the moment she saw her Blake and her Daddy. She hasn't stopped smiling since we came in tonight. She and Nan have enjoyed a quiet, restful day in the hotel while Dave and I watched Blake play ball. I can't wait for her to see Allie tomorrow. It just feels so good to see her so happy! As I type my Blake and my Ashley are sitting next to me on the couch and he is allowing her to "rip" his face off. She is sooooo happy to be holding him.

Tomorrow we will go back to the ballpark for tournament play. I hope the Tarheels we all know and love decide to show up and give it a go. Today was one of those days you just really want to leave behind and move on. Oh, yeah I wanted to tell you that Blake said his favorite part about seeing Ash today was looking down at her and seeing how chubby her thighs are now. That really made him happy to see that she is growing, and it really made me happy to know that one of his burdens have been lifted.

The road home is long, but we are almost there. Well, Ash and I won't actually get to go home for awhile because of the remodel that is going on, but at least we will be back in our home town. Allison will arrive sometime tomorrow and then the 5 of us will be back together again to fight this cancer as a team. Remember the experience of the victory can't be felt without going through the fight. We are determined to keep on fighting.

Thank you so much for checking on us today. Once I make it home I will continue posting my Ashley's story on a daily basis. The way that I get to share His story while telling hers is my favorite part of this journal. He continues to do great things in this little pickle's life. Good night from the great state of TEXAS. Trish