I have been avoiding my post tonight. I am suffering from a broken heart. I don't know how they all do it. How do they survive leaving this place without their babies? They must have a strength I do not have. I would never leave. I think I would stay in the room and hold on to my Ashley and never let go. It is so painful to know that my sweet friend will not be holding her son tonight. What will she do? How will she sleep knowing he is no longer with her? I hugged her tight and told her they were loved. I told her how strong she was and she whispered that "she was trying." All I could do was say "I'm sorry, I'm sorry, I'm sorry." She whispered to me that she "wished my daughter well." As I turned from their room back towards mine I had an overwhelming feeling of hopelessness. If their sweet baby boy could not do this then how will my baby girl? How will she ever overcome and survive? My heart has been broken time and time again in this place. It is not a happy place to live.

I don't want to feel hopeless. I want to feel confident that my Ashley will make it home. I want to feel sure that she will grow up with her brother and sister. I want to believe that He has more in store for her life. At the same time I feel such guilt over wanting and praying and pleading for my baby to survive when so many of my friends babies have not. The emotions are so difficult to sort through.

I am listening to her "squeaks" and "coos" behind me as she finally sleeps. As I sit here to type I find myself thanking Him for today. One more day. He gave me another day with her. A day to love her. A day to hold her. A day to kiss her fingers and toes. A day to pray for her. A day to marvel over her. Every day, every moment, every experience is so very precious. Each time we lose another child here in the PICU I find myself hugging her tighter, holding her longer, and hoping for my time with this child to never end. My friend was right when she told me that our transplant has given us the "gift of time". My Ashley would be gone tonight if we had not received her transplant.

Tonight I will ask you to pray for our friends in the upcoming days, and to pray for our Ashley as she continues to fight, and to hold tightly on to your children. Love them deeper. Kiss them more often. Listen to their voices as they ramble on and on. Linger a little longer in their doorways before you turn off their lights. Tell them of Jesus. Show them the way. Live life with them each day as if there would be no tomorrow. How long would you hold them if you knew it would be your last night with them? If I could I would place a thousand secret kisses on my Blake and Allie's foreheads tonight as they sleep. Please, please know that your children are a gift from the Father and you are more than blessed to have them. Just I am blessed to still have mine. Thank you for listening to the ramblings of my broken heart. Goodnight and may God grant us all hope for their futures. Love, Trish

Davian has now been received by the Father in heaven. My heart is broken again for my friends whom I have prayed for and loved over the last 5 months. They are strong and they are brave and they did everything they could to give their son life. I am proud of who they are and I am a better person for loving their little man. May he now feel the arms of Jesus rocking him to sleep.

I am asking each of you to please, please pause for moment and pray for our precious friend baby Davian. He is struggling to live and his mommy and daddy are broken. They need all the support they can get and I trust you all with the prayers for Ashley's life so now I am trusting you to please pray for her friend. He is so handsome and his smile melts my heart. He is their only child and they love him as much as I love my Ashley. I know they would be forever grateful to you for your prayers for their son. I love knowing that I can count on you to love our friends. Thank you, Trish

The teams plan for this week is baby sitting. We plan on allowing them to baby sit us while we wait on the cultures to see if anything has invaded Ash's system. She has not run fever since night before last. She continues to have a high stool output, but it is getting a little better. They think it could possibly be caused from the Cytoxin part of her chemotherapy. It is one of the side effects. We are hoping both the fever and the "dumping" are just side effects as opposed to an infection. So while we are waiting we just get to hang out in the PICU. It's really not that bad anymore. We have a lot of friends. Staff and patient families alike. It has almost become our normal. We know the routine and we know what to expect. After a while it becomes comfortable.

Ash continued to struggle from the Rutuximab infusion all through the night. During the first half she was incredibly weak. The second half she became very irritable and cried and cried and cried. It doesn't matter what I do it doesn't seem to help. There came a point when Ash was crying in her crib and I was crying in my chair becoming completely overwhelmed with the idea that we had 17 more weeks until my Ashley could possibly be free from the chemo. My nurse (who has been sent by God Himself to be a friend to me) came in and kneeled down beside my chair and began to pray for us. Her prayer was sincere and loving and exactly what I needed. I had no words to pray only tears to offer, but she allowed herself to be used by the Father to step in for me. Even during the hardest of days I see Him working and allowing others to minister to me. I am so thankful for those who have been sent to us.

Today I am tired, but I pray that I am not judged to harshly for that. There are heavy burdens that we are carrying, but there are large bundles of great JOY that accompany them. We are the parents of 3 amazing children who will one day grow up to do big things in this world. We are a strong couple. Strong enough to endure these periods of "single" parenting, and then come back together again to raise our family. We still believe that God has chosen us to do this and that He is still working in the life of our Ashley. She is amazing, beautiful, strong, and purposed. She is the one that we prayed for and I wouldn't trade a moment of our life with her. I am blessed to be here in this place with my daughter. Thank you for coming back today. You will never understand how very much it means to us to know that you are praying for our Ashley. Trish

I wanted so much for this tiny baby I had prayed for. I dreamed of how her life would be. I rocked her in my dreams and I held her in my dreams. I would wake in a panic for years as I realized I was rocking and holding my baby that had no face. I could feel her and I could feel the love that I had for this child but I could never see her. As I dreamed of her I would dream of all that I wanted for her. I wanted happiness. I wanted her to have a daddy. I wanted her to have a mommy. I wanted her to be loved. I wanted her to be wanted. I wanted giggles. I wanted pony tails and hair bows. I wanted tea parties that she would make her brother and her sister attend. I wanted swings at the park. I wanted walks in the spring. I wanted tiny feet following Allie through our home. I wanted little hands that would get into Blake's things. I wanted joy in her heart. I wanted naps in her daddy's arms on a Sunday afternoon. I wanted bedtime stories in her nursery. I wanted to give her a family, a life, a place to call home. I wanted safety, and security, and peace. I wanted to show her how very much she was loved. I wanted.

As I listen to Ash cry as she endures so much during this time I wonder what He wanted for her? Did He want the same things for her? Happiness? Family? Safety? Joy? Peace? More than anything I want her to have what He wants for her. Surely that can't be all of this? Pain? Struggles? Hospital beds? Cancer? Chemo? As she cries I cry. As her body aches tonight my heart aches tonight. I want to take this from her. I want to give her a childhood free from all of this. I want Him to heal her. I want Him to bring her home. I want Him to allow her to have her family, but He may never do these things. He may never give her all of this. He doesn't have to, but I really, really want for Him to. Is this wrong? I want her to have what He wants for her, but can she have both?

I sit here this morning struggling with where we are. Week 2 of 18 long weeks has just begun. I guess today all I want is for her to have the strength to get through today. I want Him to give her what He knows she will need to do all that He wants for her to do. I want for Him to give me the strength to realize that He is still working out His plan in her life. I want His best for my sweet Ashley Kate. In the end I need to let go of all that I wanted for her and learn to want what He wants for her.

I used to think I could do it all by myself. I didn't need to ask anyone for help of any kind. I had this crazy life of mine under control. Didn't I? I never wanted to admit that things were starting to get difficult. I never wanted to share our struggles with anyone else( and especially not the whole world!), but the truth is that trying to act like I have this adventure called Ashley's story under my thumb is just a lie. Its a lie that is born out of pride. Not the pride that comes from a sense of accomplishment because of a job well done, and not the sense of pride that I feel as I watch my children grow, but the kind of pride that says I am too ashamed to let anyone out there know just how human we are. The honest truth is that we are learning we can't do this on our own.

I believe that part of what we are going through is being used to teach me a valuable lesson. A lesson that I have never allowed myself to fully learn. I need to learn to depend upon Him for everything in my life. Not just the big things,but the little everyday things as well. During this period I am literally having to admit that I do not have all the answers, the solutions, the strength, the control, the finances, or the firm grasp I convinced myself I had on the daily aspects of Ashley's care. I am learning to humble myself, fall on my face, and depend on the God who loves me enough to patiently wait on my stubborn self to look to Him for help. Trust me, there is nothing easy about this lesson. My pride tells me that I should be humiliated. My pride tells me that I need to handle this on my own. My pride tells me that our business will be able to provide all that we need. My pride tells me that everyone has their own issues to deal with and the last thing they care about is mine. My pride tells me to stop pouring out my vulnerable heart on the pages of this journal. My pride tells me a lot of things, but His word tells me this,"Pride comes before a fall." The last thing I want is to allow my prideful self to cause this family, my family, my Ashley to fall.

I am learning to depend on Him. I am learning to open my heart.. I am learning that His people do care about my struggles, just as I care about theirs. I am learning that He does and will provide for all of our needs. I am learning that He does "own the cattle on a thousand hills". I am learning that if He cares enough to feed the sparrows that He must care enough about my sweet Ashley to provide for all of her needs. I am still learning. Trust me when I tell you that there are good days and then there are bad days. Life is not easy here in Omaha or back home in Texas, but the important thing is that our life is good. It is a gift. We are blessed far beyond what we could ever deserve.

The neatest thing about learning to depend on Him instead of ourselves is the blessing of watching Him use others to make a difference in Ashley's story. We would be missing out on so many blessings if we were trying to do this all on our own. He amazes me daily with the way He chooses to provide. I stand in awe of His plans as they unfold before me. Learning to depend on Him is teaching me to trust Him and to love Him more. I am so thankful I didn't try to keep her all to myself. He is using my little one to show me who He really is. Thank you for your willingness to love her. Thank you for your willingness to continue with us as her little story unfolds. Thank you for allowing your hearts to be opened enough to let our Ashley leave a finger print or two. You are loved. Good night. Trish

Since last week I have been on my own and doing it all. We had some changes around our house and I no longer have help here. So now I am wearing all the hats. I am getting a taste of what it must be like to be a single parent. I am learning to do all the household chores while still trying to keep things as normal as possible at work. I am learning to throw in a load of laundry in the morning and coming home during my lunch break to change the laundry and fold what dried while I was at work. I am trying to cook and make good choices while feeding my older kids. I bought some liver, but have not been brave enough to cook it yet. I do need a good recipe for liver. Tonight I made fajitas and they were actually pretty good. I even managed to get my kids to eat them without cheese (I am anti-dairy) and they even liked them. The hardest part has been getting the kids picked up after school. Today I was blessed by a couple of Moms who have agreed to pick the kids up and bring them to my office. I thank you both so very much. I know the kids don't love coming to my office and being stuck in the back room, but God has truly blessed me with very understanding kids. I am so proud of them and how well they are holding up under the daily stesses. I seem to have less and less time in my day and I very much look forward to the day that God brings Trish and Ash home. All of the extra work has left me pretty tired in the evenings, but the fatigue does'nt even come close to the loneliness of seperation from my best friend and favorite little Gherkin. I am going to call it a night because the morning will bring more laundry, dishes, cooking and cleaning. And somewhere in there I still have to run a practice and get some work done at work.

Goodnight from Texas,

DAVE

...and the God of all comfort. Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble by the comfort wherewith we ourselves are comforted of God. 11 Cor. 1:3-4

What does this verse say to me? It tells me that someday, some how, in some way we might be able to support, comfort, or minister to another family struggling along a similar path. In the beginning of this journey I would have never thought that we would ever imagine doing something like that. As our path continues to take twists and turns, and continues to teach us lessons about our faith I can see how God is pulling me out of the box I like to live inside. Who would have thought that my Ashley's life might in some way become a ministry? Only God. I don't know how it will take shape, I just know in my heart that this is all happening for a reason. As I have struggled with the constant ups and downs of Ashley's story He has sent precious mommies to encourage me, to pray for me, to share with me pieces of their children's journeys. They usually show up at just the right time. The times that I am feeling as if we will never make it out of here. The times when I am feeling discouraged. The times when I am feeling tired. So to these women, Laura, Monica, Debbie, Kayla, Joey, and Renee I want you to know that I thank God for your friendships, your encouragements, and your prayers.

Today has not been easy for Ash. She has had blood draws, biopsies, fevers, catheters, stitches removed and now we have started her chemo. My sweet baby is worn out and now we will begin to battle the side effects of the Rituximab. This is by far the most dangerous of the 3 drugs we are using to to kill the cancer cells. I am praying that she does well and does not become too uncomfortable. We have already started the nausea medicine in hopes that she will not become too sick with it the next couple of days. If all of Ash's cultures come back negative over the next few days and if her stooling slows down then they would still like for us to go to our apartment. I will not begin preparing to leave until the moment they walk in and say, " here are your discharge papers."

Well Ash is finally sleeping, and the chemo is running so I am going to start some laundry. It will definitely keep me running through the halls of the hospital for most of the night. One of the perks about our apartment is that I have my own washer and dryer and it doesn't cost $3.oo per load. I am looking forward to regaining some what of a normal life. Thanks so much for checking on Ash today and for praying for her. I hope you enjoy your evening. Take Care. Trish

Instead of packing we have rearranged our plan for the day. Ashley's white count is trying to recover from last weeks chemo so today they will knock it back out by adding in our transplant immunosuppressive drug F-K. She will have a bowel biopsy because the team has become concerned with the sudden onset of the large amounts of stool she is producing in her ostomy bag today. No one is comfortable with what is taking place. She will begin her scheduled chemo for today at 4:00 and it will run until 10:00. Ashley's liver is taking a hit from something unknown. Her bilirubin jumped from .9 to 2.1 overnight. What is going on? We are not sure. Her chemotherapy is said to cause damage to the kidneys but not the liver so we believe it is unrelated. They would like to straight cath her today but I am resistant because so far today Ashley's life has been pretty crummy and I just didn't want her to be put through anything else, but I am fighting a losing battle. She is not making urine this morning and they need a sample to test for a possible UTI. I don't think she has one, but I didn't think she had the last one either and it turns out that she did. I am sure I will relent and allow them to do it because it is what is best. Sometimes doing the right thing is really difficult. She is fussy and weak today so I plan on rocking her for most of it.

Disappointed? yes. I really am, but surprised? No. I am not. This is just what life is going to be like for our Ashley. Ups and downs. Things can change in a matter of an hour(literally). I know I prayed for us to leave only if it were the right time and the safest solution for Ash. Obviously I have received an answer. Today is not the day. I just pray it comes for us soon. Take care today and remember how very special you have all become to a tiny, baby gherkin and her family. God Bless. Trish

We have missed our opportunity. Ash has been working on a fever all night long and it has finally reached the point of no return. Her stool output has increased in the last few hours to more than 4 times the amount she put out the entire previous 24 hours. She has come down with something but we don't know what.

I don't have to tell you how disappointed I am, but at the same time I have prayed that only if it were His timing did I want to leave this hospital. Obviously He is telling us No this is not the right time. We always come so very close and then we are either stopped or we have to back up. I don't know why we can't seem to get out of this place, but for now we chase down whatever bug she has picked up and try to get through it.

Thank you for your prayers. I am afraid today will hold more disappointment than excitement.

This is my goal. My hope. My dream. My calling. I must make a difference. Not to the world, but to my little piece of it. My Blake, my Allie, my Allison. I pray for their future, their innocence, their lives. What a responsibility I have been given. Not one, not two, but three beautiful people created by the God of the universe and entrusted to me, to Dave, to us.

Making a difference means so much. It includes so much. Every day I wake up knowing that it is up to me show them all that God has created them to be. What do I want for my children? Do I want fame? Do I want fortune? Do I want success? Do I want big homes and nice things? No. These things will fade. They will pass away in time. What do I want for my children? For His children? I want them to know that the only things will follow them into eternity are people.
People are worth making a difference. To show others the love of Christ is worth making a difference.

I hope to teach them many things in this life. Things that will help them to make a difference. I want to teach them to love others. I want to teach them to have compassion and understanding. I want to teach them to be kind, to be generous, to be loyal. I want to teach them that anything worth doing is worth doing 100%. I want to teach them to work hard, to do their best. Not to be the best, but to DO their best. I want to teach them to dream, dream BIG. I want to teach them to never give up on what they love and those they love. I want to teach them to take the good that people offer to them and to leave the bad. I want to teach them to overcome disappointment and to learn from it. I want to teach them how to be leaders. I want to teach them how to be selfless, and giving. I want to teach them to love God with all that they are, with all that they have.

I want to make a difference in their lives so that they will in turn make a difference in this world for Him. I want them to feel happiness, to feel loved, to feel appreciated, to feel joy, to feel confident, to feel important.

I am not a great parent. I make mistakes daily. I am not perfect and neither are my children, but if they could grow up with their dad's integrity, and their mom's big heart, and their Father in Heaven's purpose, then I know that I will have made a difference and in turn they will make a difference.

Blake, Allison, and Ashley I want you to know that I will always love you unconditionally. I am so proud to be your mom. I will pray for you and support you. I will always be here for you. You are worth making a difference for.

My Ashley is still sleeping. She has only briefly been awake today so I slipped away from her room to go collect my mail at the apartment. I haven't done this in over 6 weeks. As I emptied out my box and collected my packages I though to myself how fun mail day was. Just reading the names on the envelopes gave me such joy. So many of you have become such dearly loved friends through this journal and your comments. There were many familiar names and a few new ones who must be reading silently along with our daily events. I just wanted to take a few moments to say thank you for each and every one of you who have taken the time to send a note, some encouragement, a gift, a prayer. You have all become such a source of strength for me while I am away from home.

On a couple of personal notes I wanted to tell Susan that I loved the pictures. The kids have grown and they are so BEAUTIFUL! Thank you for sharing them with us. It will be fun to show them to Ash when she wakes up today. I hope Eric will share his stories with us someday. He has touched me just knowing he thought of her. Suzanne, please tell Lauren how very much Ash loved the picture and necklace she sent. Your children are gorgeous and I enjoyed you sharing them with me. I also want to thank you for the gifts you sent to Ash. I love anything embroidered and they were so perfect for our princess. I love ya!

Their were so many surprises that had been collected in our mail box and I just wanted to say thanks to Erinn Ragan, Kim Jarvis, Karen Metzger, Barron and Cindy, and my sister Toni. I loved everything you took the time to send. Thank you so very much.

To my nieces Jessica and Bayly, I received your letters and your handwriting was BEAUTIFUL! I am so very proud of you both. Thank you for writing to us.

I pray that each one of you who come to Ashley's story to check on her and who pray for her know how much you mean to us. I appreciate all of the time you spend here. So many of you have made her a part of your families and I love to know that you have allowed your children to fall in love with our baby. I cherish knowing that your babies pray for mine. Thank you for opening up your hearts to love my Ashley.

We should have an answer tomorrow about where the team thinks we should go. I pray they are leaning toward our apartment instead of the transplant centers coop, but they have to clear it with the cancer team first. Just the thought of actually leaving the hospital is intimidating because of all the responsibility that it involves. Change is never easy, but it is progress. It is progress that must be made in order to bring Ash home someday. Even though I know that we will more than likely return to Omaha many, many times during Ashley's lifetime I think it is important to make that first move back home with her. It would be so encouraging to have her there with her Daddy, Blake, and Allison. All in His time, according to His plan that is my desire. Even if I seem anxious at times the important thing is that it is done according to His will for our Ashley. Thank you for praying about this for us. I love you guys. Trish

Morning rounds brought up this question: Where is Ashley the safest? What do they need to do with us? They don't feel like we need to be in this room here in the PICU. Outside of Ashley's cancer she isn't sick. No infection, no oxygen support, on full feeds. What do they do with us?

The surgeon looked at me this morning and asked me what I wanted to do. "Go home to TEXAS!" was my answer. He replied, "I don't see why that can't happen in the near future." Did
I hear him correctly? "...the near future." I pray this can happen for my Ashley. In the meantime what do they do with us? Upstairs? no thank you. The Lied for cooperative care? Only if they make us. Our apartment? I think this would be the best choice. The big question is Ashley's safety. Is she safer inside the walls of this hospital where there are huondreds of patients with virus' and germs and disease? or is she safer on the outside wiyh just her and I in our apartment? We are not sure of the answer. Please join us as we pray for direction. We would NEVER want to put Ash at risk, but the truth is that she will never be safe from the risk of picking something up from somewhere or someone.

Ash continues to sleep. Her little body is wiped out from the chemo and she can't stay awake for more than a minute or two at a time. Tomorrow she begins week number 2 of our first of 6 cycles. We only have 17 more weeks to go! I can't wait to be told the cancer is in remission.

Today brings us the possibility of leaving the hospital this week. I have learned from our prior experiences to be thankful but not naive. I just want God"s best for Ashley no matter where that may be.

This is my mission while on this journey with my youngest daughter. I am living each moment with her and soaking in all the tenderness that they hold. This afternoon as I sat and typed my earlier post my sweet Ashley Kate was sitting in my lap watching the little black letters appear on the screen(this is her new interest, helping type this journal). As I typed with my right hand using only my index finger to hunt and peck, I held her tightly against me with my left arm wrapped around her. Something distracted me from my "typing". It was something beautiful. Something amazing. It was her little heart beat. I felt it against my arm. The same little heart that slipped into cardiac arrest just over a month ago was now beating a precious rhythm against my arm. I immediately stopped "typing" and soaked in the beat. How grateful I was to be living in that very moment with my baby. As I was enjoying the beat I noticed something else just as beautiful. Her breathing. In and out, in and out, in and out. All on her own. Her lungs. The ones He created her with. The ones who now have cancer inside of them. Her little lungs that are scarred and labeled with this ugly disease. Her little lungs that have struggled for so many months to rid themselves of a ventilator. Here they are today breathing beautifully, clearly, effortlessly just as He created them to. I began to be very still. Searching for more. It didn't take long until I found it. A rumble. A movement. Down low from deep inside of her tiny body. It was coming from a part of her that didn't even belong to her just 5 SHORT months ago. It was a gift. This gift was now making some of the most beautiful sounds and movements I have ever heard or felt. It was the bowel. The intestine. The gift that was given from another who had to leave. The gift from a little life that is forever a part of my Ashley's story. I was now overcome with emotion. I sat and I cried. I kissed her tiny head. I breathed in the smell of her thinning hair. I sat. I enjoyed. I loved. I lived. I lived the tenderness of this beautiful little girl that was given to me. Given to me to hold on days like today when her tiny body fights to stay awake. Fights to kill the disease inside of her lungs. Fights to live every moment of life she is given.

"Be still and KNOW that I AM God". This is what He tells us to do. Today in those moments I did. I became still enough to know the He is who He says. He created my Ashley. He gave her to me to love. He used her to show me who He was. I am glad I have learned to live each moment of this life in this way. I would have missed so very much if I had decided not to just be still. He is working in her life. He is taking care of her. He is loving her. I will forever be changed by this little life who sits upon my lap to help me share His story by writing hers. Thank you God for becoming real to me.

Once again we are surviving the slow weekend in the PICU. Ash's WBC dropped even lower today. It is now only a .5, and she is really weak and wobbly today. She just now woke up for the day, and she looks as though she is ready to go back to sleep. She is sitting here with me as I type with one hand. She is holding on to her box if tic tacs, but she doesn't have the energy to shake them.

Allie is on her way home from my sisters house where she celebrated her 9th birthday with a really fun slumber party. We are so blessed to have the family that we do. All of my siblings and their spouses worked together to make Allie's party such a success. Dave's parents drove her to Oklahoma and my parents got to see her . I know she was so happy and excited to celebrate with them all. I am so thankful my Ashley will get to grow up surrounded by these amazing people. I believe Al's plan was to try and sleep for the entire 5 hour trip home.

I was on the phone with Dave during the Tarheels first game this morning when our son took the plate with 2 outs, 2 runners on base. I was feeling so nervous for him when all of a sudden the crowd went crazy. My Blake hit an over the fence(Dave said he cleared the 8ft fence by 8 to 10 feet!) HOMERUN! I was so excited for him. I wish I could have been there to see it, but since I couldn't be God allowed me to hear it. I can't wait to add another homerun ball to his trophy shelf! They play again at 2 o'clock. Guess what I'll be doing? listening to the crack of the bats by phone. Go Tarheels!

Well my baby fell asleep so she and I are going to crawl up in our chair, watch the snow fall outside our window, and listen to our favorite CD(Third Day's Offerings) while we wait for the game to start. Thanks so much for praying for our baby gherkin today. We love you guys. Trish

We have been given another day. It was a tough one for Ash physically and a tough one for me emotionally. At the end as I look back over it I realize that it was a gift. Each moment of today included my Ashley and that made it so special. He was, as He always is, "faithful". He is our Father just as Dave is Ashley's father. Dave never fails to love her, to pray over her, to want the best for her. David is faithful in his love for our daughter and he wants to protect her. God feels that way and so much more for each of us. How comforting it is to me to know that He is standing over me and mine just as Dave stands over our Ashley.

I made a new friend tonight. I know she was sent by the Father at a time when missing my family made this seem like the loneliest place on earth. She too was blessed with a beautiful baby who is 2 years and 9 months post transplant. What great perspective our visit brought to me. Our girl's journeys have been different, but yet they are still the same. She shared with me a phrase that I will carry for my life time. "Transplant is not just the gift of life. For us, it is the gift of TIME." We have been given time with our girls. I have been given time with my Ashley(who now sits snoring in my lap as I type with one hand). Precious time with this baby girl who has taught me how valuable each and every moment is. I would not trade one moment of this time spent loving her for anything this world could offer me. I would do this all again a thousand times over if it meant we could have our Ashley. Knowing what I do now, I would still do it. He has used this little one to reach me, to teach me, to grow me, to show me, to break me so that He could remake me. There is still such a long way to go, but He continues to be faithful. Just as I am the constant in Ashley's life, He is becoming the constant in mine. Just to be with me He has done everything, given everything because He loved me. I think I am beginning to understand that kind of love.

As I lay down my head tonight knowing that Dave would do anything to protect my Blake, my Allison, and my Ashley I take comfort in the knowledge that the Father would do that for me too . He feels my broken heart, He collects my tears, He shares in my joy, and He gave us another day with our baby. Thank you Father for loving me so very much.

Our Ashley is so wiped out. She is pale. She is weak. She is whimpering. She has hit what they call the "nadir" period. Her white blood cell count is gone. It is .7 today. Not even 1 full point. The normal range is from 6. to 17. To see her go from smiling, sitting, clapping and laughing to this in just one day is frightening to me. She is so fragile and is the most suseptable to infection at this point. I guess this is what we want to happen. I think this was the goal. I just wish we didn't have to shoot for a goal like this. Her defense is now gone and we have to allow the chemo to kill the cancer cells. She didn't wake this morning until noon. She is just so very tired.

We will be giving her a blood transfusion this afternoon. Her hemoglobin dropped last night. I am hoping she will have a little more color and energy after she receives the blood. We are sending cultures to try and stay on top of any infection that might pop up. I am praying, praying, praying for protection over her. She is so amazing and so wonderful. I tried to hold her and comfort her when she woke, but she is just so weak she can't even stand for me to pick her up. This is scary. I am trying to keep her in total isolation from as many extra people as I can. I hung another sign on our door this morning (that makes 3) requesting that people not come in and if they must to please keep Ash safe by taking precautions. You would be amazed at how many people just don't seem to know how to read. They open the door and walk in like it is no big deal. I think the difference is that she is not their baby. If she were they would try and be more careful I am sure.


I know yesterdays video was short and not of great quality, but it was the first time I had seen her smile in almost a month. I was so afraid that I would never see it again, so when she shared it with me I was so happy I wanted you to see it too. I can't wait for her ornery side to come back to us. I want her to feel good enough to give us that little grin and then cause some trouble.


Today is the big day. The one Blake has been waiting for. The Tarheels are playing in their opening tournament of this season in Mesquite. How I wish I could see those boys play. I miss watching them all come together out on that baseball field. Dave promises to call and give me the play by play of the games. I am anxiously waiting. I miss my son. He is go great. I miss watching him practice. I miss hearing him talk baseball with me. I miss watching him throw those guys out from behind the plate. I can't wait for him to hit the ball all the way to Omaha for Ash today. Allie's big day is here as well. Tonight is her birthday party. Hollywood night. The guests will be performing in their own version of "American Idol". The girls are all practicing. The show starts at 5 and they have already begun getting hair and make up done. I wish I could be there with her. She is so excited! I love that 9 year old "little" girl.

It seem so odd to have us all scattered in different states. Our favorite thing is to all be together doing things together. Today some of us are in Nebraska, some in Texas, and some in Oklahoma. I can't wait for the day when God brings all 5 of us back together again for good. What a day of rejoicing that is going to be. I can't wait to load our girls up to go watch their brother play ball on a hot summer weekend. I can't wait to take Blake and Ash to see Al cheer and tumble. I can't wait to take Blake and Al to the park to chase after their baby sister. I can't wait to sit by Dave on the couch, hold his hand, and listen to the "chaos" inside our four walls caused by our three kids. Oh, I can't wait.

God is still so good to me. He is still blessing be on a daily basis. His strength is carrying me on the tougher days. I am asking Him to be real to me today. To allow me to feel His presence in this room protecting my baby. I know some of you don't understand what I am saying. You may think I am crazy, but if I could just feel Him today I know my spirit would be renewed. He is real. He does care about my Ashley and her struggles. He does know how very tired I am. He does love us. He loves me. He loves Ashley. He loves you. I know it.

I don't understand why some children are born healthy and others are not.

I don't understand why some children with short bowel syndrome have to go to transplant when others do not.

I don't understand why some children with transplants go on to live normal lives when others do not.

I don't understand why some children live their lives in hospitals while others do not.

I don't understand why some children survive when others do not.

I don't understand why some children get cancer when others do not.

I don't understand why some children fight for their lives tonight when others do not.

I don't understand why some children and their mommies have to hurt so bad when others do not.

I don't understand why I can't understand these things and so much more. I don't understand what I am to learn. I don't understand what I am to be doing while we are here. I don't understand what my purpose is at this time. I don't understand, but there is One who does. He knows tomorrow. He knows the answers. He knows the things I sit and wonder about day after day.

I don't question Him, but I do tell Him that I don't understand and I don't think I ever will. I just pray that while I don't understand His reasons that I can still fulfill whatever role He intends for me to. I pray every day that He will use me, use Dave, use Ashley to make a difference for Him. If we must go through this then I pray that it serves His purpose and that it brings glory to Him.

If you cannot see the video below try clicking here.

PLEASE, PLEASE, PLEASE PRAY FOR OUR FRIEND BABY DAVIAN. HE AND HIS PARENTS DESPERATELY NEED YOUR PRAYERS TONIGHT. THANK YOU FOR CARING ENOUGH TO PRAY FOR OUR FRIENDS.

It finally came. We were hoping it wouldn't show up. It is definitely an unwelcome guest! We are waiting for it to go, but for now we must put up with all that it brings. Ash started the day with a heart rate of 200+ and it is still in the 200 range. It was followed by the nausea and vomiting. She has thrown up more times than I can count and I have spent the morning bathing her, dressing her, changing her linens and trying to keep up. Bless her tiny heart. I did not want this to happen to her. The crazy thing is that she feels better than she has in days. She was playing, vomiting, laughing, vomiting, clapping, vomiting, smiling, vomiting. I just don't get it. It has been going on for hours and she is starting to wear out.

Well I guess this is all I am supposed to share with you at this time because I have typed another paragraph 3 times and for some unknown reason to me it just keeps disappearing. I'll just post more later. I am going to have to learn how to out smart this silly computer. Take care, Trish

See my Ashley? See her cry? This is what she looks like while trying to deal with her new diagnosis. I know it is hard on us emotionally, but the way we feel can not compare to the way my precious little one feels. She is the toughest person I know. She continues to inspire me and to teach me how to be strong and how to persevere. I love this sweet baby and I know she is going to do this. I pray for Him to strengthen her every day and to give her an extra measure of His grace as she tackles what we lay before her. When I start to feel sorry for myself all I have to do is look over in her crib, pick her up, snuggle her close to my heart and He provides me with a good dose of perspective. I am merely her mommy. She is the patient. She is the one who lives her story day after day, and she does it beautifully! I am so proud of her!

Along the way I have learned so very much. Learned about others, about myself, about the Father.

Along the way I have cried so very much. Cried for my Ashley, for her struggles, for her pain.

Along the way I have smiled so very much. Smiled while I held her, smiled while I cared for her, smiled while I loved her.

Along the way I have grown so very much. Grown in my walk, grown in my relationship, grown in my spirit.

Along the way I have loved so very much. Loved more than I imagined, loved more than before, loved every moment.

Along the way I have hurt so very much. Hurt because of the pain, because of the separation, because of the disappointment.

Along the way I have experienced joy. Joy unspeakable, joy from within, joy that can not be measured.

Along the way I have prayed. Prayed for my children, prayed for other children, prayed for His children.

Along the way I have searched. Searched for answers, searched for understanding, searched for meaning.

Along the way I have aged. Aged in my spirit, aged in my person, aged in my faith.

Along the way I have been blessed. Blessed to be her mommy, blessed to be the one she calls for, blessed to be the one who holds her.

Along the way I have learned, cried, smiled, grown, loved, hurt, experienced,prayed, searched, aged, and been blessed. Along the way I would not have traded one minute of this journey for it is along the way that I have become the mom I am today. I am Ashley's mommy and I am thankful that He chose to bring me along the way.

Along the way He has brought you into our lives and her into yours. Along the way He has told His story while writing hers. I pray you too have been blessed as you have allowed yourselves to continue along the way. I don't know if there will be a happy ending but I know that He has traveled beside us along this way. Good night and God Bless. Trish

Today was a great day for our oldest daughter Allie. She sure did enjoy turning 9 years old today. It was her birthday and she was going to make the most of it. I joined her class at school for a birthday party for her and then later I returned to school to have lunch with her. She is in the 3rd grade and I guess at that age Dad is still pretty cool. I enjoyed sitting with her friends and listening to their silly chatter. Such as:

If 20 men walk into a room and look in the the mirror and they see twenty four-heads how is this possible......I thought about it for a while and gave what seemed like several logical answers to me and the little girls just laughed at me. The answer was that they saw twenty foreheads in the mirror. OK, the 9 year olds out smarted me on that one.

I really enjoyed having lunch with Allie and her friends. As I was there I was thinking of Trish and how much she would have enjoyed spending the day with Allie and her little friends. When I stop and think about it I am amazed at the person Trish is. I spent 3 days in the hospital last weekend and I think after 3 or 4 more days I may have cracked. There are so many trials and difficulties associated with our current circumstances, yet God always provides the measure of grace we need to make it though each day.

We have recently lost some, and some have walked away because the pressure was to great. To those who had to leave, we thank you so very much for the time you spent with us and the wonderful things you were able to do while you were on the journey. For those of you who are still with us, still reading Ashley's Story, still praying for a little Gherkin, we thank you so much for your steadfastness. And I want to say a special thank you to the folks in Omaha who have reached out and been there for Trish.

Goodnight,

DAVE

I knew this new part of Ashley's story, the part that includes the cancer, would be difficult. The fear of the unknown, the stigma of the disease itself, the treatment(chemotherapy), the battle against the invading cells, the knowledge that once it was discovered in her body she will face it for her lifetime, and the wondering if she will be stronger than it is, are all difficult for Dave and I as parents. As difficult as all of this is on us it pales in comparison to the difficulties it brings to our Ashley. We are in the 3rd day of the first cycle and it is tough. Our Ashley is struggling. She aches, she hurts, she sweats, she can't sleep, she is confused. The high level of steroid is making her miserable. For the first 5 days of all 6 cycles she will be given this incredibly high dose. Ash is trying to cope with how she feels. She is crying constantly and screaming if I am not holding her. She will not allow anyone else to touch her or hold her. She is digging her thumbs into her eyes and pulling out her hair. She is tearing off her ostomy bag and pulling off her leads. She just doesn't understand why she feels so bad.

My coping mechanism at this point is: Diet Coke(yes, after being 6 weeks free from my drug of choice it has reared its ugly head back into my life, and I really don't care.) and Chocolate.

I cry with Ash while she cries. I cry for Ash while she drifts off to sleep. I cry for Ash as I dream of better days where she feels like playing with the baby in the mirror again. I cry and hope and pray that we will learn to cope with all that is going to happen to her in the next 18 weeks. When I think of how long this cycle of chemotherapy is it makes me cry even more. 126 days. We have to make it 126 days. She has to deal with all of this for 126 days. She has to stay free from infection and illness for 126 days. She has to beat this cancer for 126 days and then we will move on.

How I wish that cancer and transplant related issues where all that we were battling right now. Our list of "must deal withs" is long and seems to be getting longer and longer everyday. In the midst of all that goes on in Ashley's story real life continues for our family back home and as you all know real life is just that. It isn't always easy. It doesn't always go the way you had hoped or planned. The underlying reason that we are able to continue is this: We believe that He has a plan for our Ashley, for our Blake, for our Allie, for our family. Even though we may be caught off gaurd or caught by surprise I believe that He is not. We will learn to cope with all the changes, the tough days, and the time we are forced to spend apart. Thank you for lifting our family up in prayer. It means so very much.

We had another sleepless night. Ash doesn't rest unless I am holding her. She will not allow me to lay her down at all. She fusses and cries, "My maaama, maaaama" unless I am holding her. I really don't mind except for the fact that I can't seem to get a shower. I guess the fussiness is just part of it. They tell me the high dose of steroid is making her so grumpy and miserable. I just keep telling her that its a good thing I love her so much or she would have to lay there and cry. I don't think she understands what I am saying.

Morning rounds didn't include too much. Outside of the cancer Ashley looks really great. Her organs are functioning, she is tolerating her feeds, she is infection free. She would be out of here if the tumors hadn't shown up. The main concern while she goes through her chemo is keeping her infection free. We are keeping her as isolated as possible and limiting the number of people who have access to her. I am now taking vital signs so that the techs aren't an extra set of hands touching her. The docs don't even enter her room in the mornings in an attempt to keep more germs from being introduced to her. I am making a poster for her door requesting that she have no visitors and that all who must enter are gowned, gloved, and masked. We just can't risk her picking up anything right now. My hope and prayer would be that as we take her immunity all the way down that she stay well and not be exposed to any bugs, but I realize it would have to be an act of God to keep her from getting sick during this time. Its my prayer, but its not my expectation.

The good thing about all of this is the time I get to spend rocking and cuddling my little one. She is so beautiful and I spend hours and hours just staring at her little face and all of its features. I hold her hands and marvel at how amazing God is. The intricate details of her person amaze me daily. He has created such a special little girl and He has allowed me to be her mommy. I know I am blessed. I will not complain. I am honored to be in the place that I am. She is so worth all of this and I pray that she is given the chance to come home and grow up in our home with our family. I am learning many, many things about myself during this time and I believe He had to reveal these things to me in order for me to be the mommy He needs me to be for her.

Dave called and told me how excited my Allie was about her birthday today. He took a cookie cake to her class this morning and had flowers delivered to her from me(purple of course!). She was so happy. He is going back to the school to have lunch with her on her special day. I told him to try and be cool and not dorky and he said, " I don't have to try and be cool. I just am." I sure hope she thinks so. Tonight is the big date and I bought her a new outfit complete with matching shoes, purse, and jewelry. I can't wait to see the pictures of her in it. I know they will have a great time just the two of them. She sure loves her daddy and it blesses me to know they will be spending this very special day together. Blake was just as excited about Al's birthday arriving as she was. He is the most incredible big brother a girl could ever have. He is just so happy she gets to celebrate a day that makes her feel so special. He spent his own money on her gift and he was so proud to buy her something she really wanted. I love that kid. I guess he will be hanging with the grandparents since none of them were invited to go on the date night.

As sad as I am about missing her special day, my heart is blessed by those around her who want to make it extra special. We have an amazing extended family and I know I can count on them to put smiles on her face and joy in her heart. 9 years ago today God blessed me with my oldest daughter and my heart has never been the same. It truly is a good life that I am living.

Thank you for loving my Ashley today. Those of you who have hung on and continue to travel this journey with us have a permanent place in our hearts. We love you for caring so much. I hope to bring her home someday and I hope you all have the opportunity to watch her grow up to do big things for the One who gave her life. Take care today and may He bless you. Trish

Tomorrow is my Allison's 9Th birthday. As I sit here in this hospital room 700 miles away from that beautiful girl my heart can't help feeling broken. I love that little girl with all of my heart. From the day she was born we knew she would be trouble with a capital T! She has not disappointed, but along with all the trouble comes a wonderful spirit of independence. I love to just sit and watch her. I love to listen to her talk. Her goals and her dreams may seem silly to some, but her passion makes me want to see her succeed. She has beauty that is undeniable. Talents that inspire me. Humor that tickles me. A sweetness tucked deep inside the tenderest of hearts. An innocence that is precious. My prayer is that my sweet Allison will have the most special of days. I pray that her day is filled with happiness, with sweetness, with special memories. I pray that she will know how very much she is loved. Allie, I love you. I am proud of who you are. You my sweet girl are my best friend and I wish you the happiest of birthdays.

My Ashley and I are hoping that there will not be any more birthdays or special days that we have to miss out on. She is trying so very hard to make it back home and I pray that we will be there soon. Missing out on Blake and Allison's birthdays are some of the hardest things I have ever done. I just know that a mom is supposed to be there.

We have decided to take Allie's party to my sisters homes in Oklahoma where they will fill in for me. When Allie found out her Aunt Toni and her Aunt Kathy throwing her slumber party she told me, "thats the next best thing to having you!" Thanks guys for filling in for me. I love you both! (don't forget to take lots of pictures) Dave is planning on snuggling in next to Al in the morning and singing happy birthday to her. I wish I could be there to hear that! Please pray he doesn't damage her little ears. Tomorrow night he will be taking her out for a date night. Putt Putt and Pappacitas are on the agenda. She is so excited.

These days are hard for our family as we struggle to keep our family going while living so far apart, but we know in our hearts that His plan is in the works. We will survive this time and the five of us will be stronger because of it. We would do anything for any of our chuldren, and we are so blessed to have been chosen to parent these amazing young people. We love you all and we are forever in your debt. Thanks for loving a little pickle and her family.

It may surprise you to know that I am talking about my sweet Ashley and NOT me. She is so grumpy! The oncology team just stopped by and said, "Steroids." That's the answer. That is what makes my sweet baby turn into a grumpy baby. I am having a difficult time sneaking over here to post anything short or long because she just wants to yell at me if I am not holding her. What I have figured out this afternoon is that she yells at me even if I am holding her so I have laid her in her crib to yell at Blue for a little while. Lets see how much Blue and Steve appreciate her little attitude.

After spending 5 months in this hospital you begin to get very familiar with the employees who work here. We have been to CT more times than I can count and the staff in there know us pretty well by now. This morning while I was there the nurse who was pushing the contrast into Ashley's line looked up and said, "This just isn't fair! Why is she still here in the hospital?" My answer to her was the same one I tell to myself on a daily basis, "I just know there is a purpose. I believe God has a plan and He is working it." She looked at me and said, "Well, I just think it STINKS!"(that's not the word she used but I know several children who read Ashley's journal and I think you can figure out what she said). She looked at me like I was crazy. I told her, "I can't explain it. I just have to believe or I couldn't continue day after day." She wished us well and I thanked her, but I could tell she thought that I had lost my mind. So as I think about our conversation this is what I know. I know that this doesn't seem fair, but neither was the cross. I know that Ash has done nothing to deserve all that she endures, but neither did Jesus. I know that my Ashley was innocent and that she is paying the price for the poor decisions of others, but so was Jesus. He was innocent. He paid the price for my sins. He suffered because of the poor decisions that I have made in my life. Please don't misunderstand my statements. I am in no way comparing my daughter with Jesus. I am simply sharing with you what gets us through day after day. Things are not easy. Things are not always just. Things don't always seem to be fair, but I know that God is good. He is holy. He is righteous. He is just. I believe that He is allowing my Ashley to endure these circumstances so that one day she might bring others to Him. She might share her story and tell of His grace to one who has never known His grace. This is what I believe. I may be wrong, but this is what keeps us going forward.

Well, our fussy little bundle of baby girl has fussed herself to sleep. She has a long way to go. The next six weeks will determine if we will be heading home to Texas or not. It was frightening to look at her lab work this morning and to see how very low her counts are. As low as they are today they are still not low enough to fight the cancer. They plan to take them all the way down to where she has nothing left to defend herself against disease or infection with. Once she is wiped out then they will begin to build them back up. At this time she is very susceptible to infection. She must wear a mask as we go through the halls for tests. We are trying to keep her as isolated as possible. Anyone who enters our room must be fully gowned, gloved, and masked before opening the door. We are doing the best we can to protect her and then we leave the rest in His hands. She can do this. She is the tiniest, toughest little pickle I have ever seen, and I am thankful to be her mommy even if she has become a "little" fussy and irritable. Thanks for caring today. Thanks for checking in on her. Your prayers are appreciated. Trish

In the early morning hours I laid in my chair and listened to my precious baby struggle to find sleep. As I sat quietly trying not to move (for fear of waking her up from her dreams) I realized that 5 months ago I had sat in the waiting room trying not move for fear of waking up from this dream. A dream that I had been dreaming for weeks, wondering if she would ever get "the" call. We waited quietly as Blake and Allison slept on the floor. We waited for the nurses to come and get us so that we might see our precious Ashley. She had made it through the transplant and now they were settling her into her room. Once I realized what day it was I was overcome with a spirit of thanksgiving. How humbled I am to know that another mommy thought of my precious baby on the very day that she lost hers. This mommy is never far from my heart. My days get crazy and I may not mention our donor family every day, but they will forever be a part of my Ashley and her story. Without their gift she would not have a story.

Today is day 2 of our 18 week cycle of chemotherapy. Her chemo consists of 3 different drugs and then a group of drugs given to help cope and fight off the side effects of the main ones. On cycles 1 and 2 she is given the most dangerous of the drugs. She receives it on days 1,8,and15. It runs over 6 hours into her little body. It is followed by the actual "chemo" drug that she will receive on day 1 of all 6 cycles. She then receives a very high dose every 12 hours of the steroid Prednisone on days 1,2,3,4,and 5 of each cycle. At the end of the 18 weeks we will re-evaluate the cancer and decide if she will require another round. As I watched the drugs go into her little body I pictured them squishing all of those cancer cells and making them go away for good. This is the goal.

We are on our way to have a CT scan done of her neck, thorax, abdomen, and pelvis. I am not sure what they are looking for. It may just be routine in order to have new films to make comparison to.

As we battle our cancer on this end of the hall, we have precious little friends whom we love who are struggling today. Please pray specifically for our friend Davian. He too is from Texas and he is very, very sick today. He was transplanted the week after Ash and he has been out of the hospital for a couple of months. He was readmitted for a virus and things have gotten crazy from there. His parents could really use some support today. Thank you for your willingness to pray for babies who you have never met. Your hearts are so precious and I appreciate the way you allow Him to use you in our lives and the lives of our friends. May you have a wonderful day and may you feel His presence in your lives. Trish

"When you pass through the waters, I WILL be with you; and through the rivers, they shall NOT overcome you. When you walk through the fire, you SHALL NOT be burned, nor shall the flame SCORCH you." Isaiah 43:2


Tonight I have sat and watched my sweet Ashley rest as we drip some of the strongest and most powerful drugs into her tiny body. At this point she is so unaware of the battle that rages inside of her. There is a battle of the good against the bad. The good cells are trying not to be overcome by the bad ones. We are killing the cancer cells and busting them into tiny pieces. If only I could push my will, my fight, my determination, my desire for her to live into her IV along with the these drugs. I would squish this cancer if I could. I would stomp the life out of it. Instead I just sit and hold this beautiful baby and admire the beauty of what He has created and has allowed me to love.

I spent most of today trying to study and learn about the chemotherapy and its effects. I have read and re read the information provided to me. I am trying to understand how it is going to work. I trying to learn what signs and symptoms to watch for. I am trying. My mind is tired and I am not sure it is doing me any good to keep trying. There is so much to learn. I wish I could just sit back, relax, and trust. That is what I want to do. Not so much trust the drug, the team, the staff, or the hospital, but trust that God is going to bring her through. As I read this verse in Isaiah I try to apply it to my Ashley's situation. If He would go with her through the water and not allow it to over come her, then I believe He will go with her through her chemotherapy. If He would walk through the fires with her and not allow them to burn or scorch her then I believe He will go through this cancer with her. I don't know for sure if she will come out on the other side of this unchanged, but I do know that she will not come out of it alone.

Ash is beginning to be fussy and is a little nauseated as we approach the end of the first day. It will take several days or maybe even a full week before we see changes in her appearance or begin to see evidence of other side effects. I am praying they will be minimal for her, but at the same time I am trying to prepare myself for what may occur. If I honestly shared my feelings with you at this point I would have to admit that I am not only very scared for my baby, but I am disappointed and hurt that she is having to endure yet another difficult circumstance. More than anything I want for my Ashley to overcome all of this and to use it to tell others of His goodness and His love. I pray she is given that chance.

The end of the first day is almost here. She will be un hooked from the last drug of today's round and then be given some medicine to help her tummy not feel so yucky. I am proud of her. She made it through the first day of battle and she will wake in the morning ready to fight day 2. She may be tiny and cute, but she is tough and determined as well. I am awed by this little girl and her spirit. Thanks for coming to Ashley's story today, and for praying her through. Good night.

As I type Ashley is receiving her 3rd chemo drug of the day. This last one will not be finished until around 11:00 tonight. Ash has been sleeping most of the day and thus far all seems to be tolerating the chemo just fine. If she is going to have side effects we don't expect them to show up for a few days or a week. Tonight I pray that we will be able to get our Gherkin through this cancer and that before long we will all be sitting together in our home looking back at this chapter in Ashley's Story.

Trish and I recently had a conversation concerning Ashley's cancer. Trish was telling me that she guesses that we are going to just have to learn to not live in fear. I was telling her that I already don't worry and don't live in fear. I told her I was kind of encouraged during our meeting last Friday with the oncologist. It was this point that she turned and looked at me like I was some kind of space alien. "How could you possibly be encouraged?!? our daughter has cancer!" Then she told me I was living in a land of daisies and rainbows but certainly not in reality. I don't know about the rainbows, but I do try to look at the glass as half full. I think deep down inside Trish does too. I was laughing tonight because Trish was telling me that I have turned my kids into little daisies and rainbows.

Tonight I am very thankful to my parents and to God for giving me a spirit of daisies and rainbows.

DAVE

I just spoke with the oncologist and have given my consent to begin Ash's chemotherapy treatment this morning. Yesterdays PET/CT Scan revealed no additional tumors in her lungs or abdomen. We have 4 identified areas and those are what we will be hoping to attack with her treatment.

The side effects of chemotherapy are horrible. I am sure many if not most of you have had a family member or have known someone who has been diagnosed with cancer and has had to endure a chemo cycle. The effects are the same for children and babies. Ash will lose her hair, become weak, feel nauseated, have difficulty sleeping, personality changes and mood swings, weight gain in her face(can you even imagine those puffy cheeks getting any bigger?), fever, chills, exhaustion, flu like symptoms and feelings of illness, night sweats, muscles aches and pains, swelling, diarrhea, be open to infection due to the very suppressed immune system, the list goes on and on. These are the minor side effects that she will struggle with. The list of possible major effects of the drugs are frightening. The one that hit me the hardest was infertility. The thought that my sweet little girl will one day grow up and be denied the opportunity to become a mommy is hard for her mommy to accept. As I struggled with this one a peace came over me in the middle of the night knowing that I could not love her any deeper had she come from my own womb rather than my heart. Ash will have the opportunity to have children. They will just grow inside of her heart instead of her womb. She will be a mommy someday if the Lord wills it.

I have a mixture of feelings inside of me. I am ready to go! I want to get started and kill those ugly cells. I want to do this so that she can come home to Texas. At the same time I am scared for her. My heart aches for the difficulty she will experience because of the drugs. I wish I could take this from her so that she would not have to endure any of it. If Ash does well and can stay infection free, virus free, maintain her fluid balance and full feeds then we will bring her home to finish her chemo in Texas. If everything happens beautifully for her during the first 2 cycles then home to Texas we will go. Please God, if it be your will allow us to move home.

Ash's chemotherapy will consist of 6 three week cycles. After her 18 week course of treatment our prayer is that the cancer will be gone, will not have spread, and will not come back. We would appreciate any time you would spend in prayer for her today. She is sleeping so peacefully and she looks just beautiful. She is wearing a pair of princess jammies and her little bunny slippers. She is ready to go. I believe in this little girl and I believe in the power of God. I think she can do this.

So in case you didn't know this about me there was a time in my life when I was in great shape. I know, I know that is so hard to believe, but when I was in high school my sport of choice was track and field. I actually attended college on a track scholarship before Dave and I moved to Dallas so he could attend Chiropractic college. I had always been a fast runner. As far back as I can remember I was usually the fastest runner in school. In kindergarten I ran faster than all the boys. First grade it was the same. Second grade, third, fourth, etc. etc. It was just my thing. I could challenge anyone to a race across the playground and more than likely I was assured a victory. There came a time in junior high school where my coach challenged me to do more than just sprint. He wanted me to learn to run the hurdles. He was convinced that if I could just learn to 3 step those 100m hurdles there was no way anyone else could beat me. Even though he and my dad held on to this belief I myself was not so sure. They honestly wanted me to not only run faster than the others in my field but to also out jump them. So off I went.

I remember my very first race. It was not pretty! I think I actually knocked over more than I jumped. I came off the track bloodied and humiliated, but more determined than ever to learn how to jump those things. My dad built me a set of practice hurdles. I remember coming home from school and setting them up in the yard. I would do stretches. I would do drills. I would do sprints. Over and over again I would work on those home made hurdles. The more I practiced the more determined I became to learn how to win at those silly things. It didn't take long before I began to place in a few races. Then I actually won a couple. Before I knew what had happened to me I was not only running the 100meter hurdles but also the 300s. My first year as a hurdler I qualified to run them at the state meet.

So you may be wondering why I am sharing all of this with you. As Dave and I spent a few moments talking this weekend he brought it up. He asked me if I thought that our experience with Ashley's life reminded me of being a hurdler. I had never really thought of it like that before, but he was right. I was happily sprinting through my race of motherhood. Doing an ok job and winning most races that I entered during this part of my life when all of a sudden my Ashley was born. Now I had always wanted to add another child to my race of motherhood. I had actually been asking God to prepare me to do this and to give me this child. What I wasn't prepared for was being asked to hurdle rather than sprint. Sprinting through my race of motherhood I was already good at. My faith in God was always there leading me along and strengthening me, but hurdling? now that was going to take a whole different kind of faith. A faith that I never even considered I could have. Being Ashley's mommy came easy to me. Loving this tiny gift from God was a lot like sprinting. It was just something I was born to do. The hurdling part came into play when they told us she had short bowel syndrome. Ok, I can do this. I am a hurdler right? Then came the liver failure. Ok, I can do this too, instead of one hurdle on the track I now have two. Then before I could make it over the second hurdle I looked up and saw another one coming. Transplant. I can do this. My faith and my endurance are being strengthened. As I continue in the race I close my eyes and grit my teeth as I run as hard as I can. It seems as though the race is never going to end. I open my eyes and then guess what I see? another one coming. Cardiac arrest. By this time I am tired. I am running out of steam. I can feel myself slowing down and my faith NEEDS to be strengthened. If I am going to win this race I need to make up some ground. I have been knocking a few of those hurdles down along the way. I have to clear this one. No bobbles. Then I look up and see something ahead of me. It looks like a finish line, but I am still so very far away from it. It seems as though I have been given a little more distance between this last hurdle. I am feeling encouraged. I am sprinting toward the finish line. My Ashley is breathing well and she is finally on full feeds. I can feel my faith becoming stronger and stronger as I edge toward the goal. I approach the next hurdle. It seems so much bigger than the last. It really isn't. I am just tired. This next hurdle is ugly. I can tell it has been knocked over a time or two before. Cancer. Are you kidding? Do I have enough steam left to carry my Ashley over this hurdle and on to the finish? I realize I do not. My strength is gone and I begin to slow. It almost seems as though I am running in slow motion. I am no longer sprinting. I have begun to jog. Almost walk. As I edge closer and closer to this next hurdle with the goal of the finish line on ahead I need something more than just a desire to win. I need faith. Real faith. I not only need faith, but I need Him to take over the race. My legs are done. My feet are aching. If Ash and I are going to cross that finish line it can't be just the two of us breaking that tape. It has to be HIM. He has to cross that line with us in tow.

This race is the longest and hardest race that I have ever run. When I entered the race I was confident in my ability to win. There have been some hurdles in my lane that I look back over my shoulder at and I can't believe that we have made it over them. Now there is the hurdle of the cancer she faces looming before us. I am surprised at how high this hurdle actually is. I realize that the only way we are going to put it behind us is through our faith and trust in the Father. He is the one that allowed me to enter into this race in the first place. At times I have forced Him to run in the lane along side of me. At other times I have allowed Him to run ahead of me. At this time I need Him to pick us up and get us over the hurdle that is in front of us.

Chemotherapy is looming ahead of us in this race to the finish. It is an ugly hurdle and it is a high hurdle. My faith in Him tells me that there is no hurdle too high for Him to help us get over.

Ash and I have just arrived back in our room. The surgery and scope went well. She now has a shiny, new broviac line in the left side of her chest(whats another scar at this point in the game?). She is doing well, a little swollen from all the fluid they ran through her while under the anesthesia, but is looking well overall. She is breathing on her own and was able to go on and off of the ventilator easily. At some point she will require a bubble bath tonight, but for now I am just going to allow her to be dirty. Hopefully the beta dine won't stain her skin if I allow it to sit there for a few more hours.

I have not slept since about 5:00 this morning and my head is aching. I am really looking forward to an evening nap, but first I get to enjoy a home cooked meal prepared by a wonderful lady who is taking such good care of me. Thank you so much Lou Ann. That is just what I needed after such a long day.

The oncologist came by while Ash was in surgery and I was in the waiting room. I did not get to talk to him about the plan for chemo tomorrow or the results of the scan. He left a message stating that he would be by between 9 and 10 tomorrow. I have many, many questions and concerns after reading through the consent forms about the chemo drugs. Maybe I should just sign the consent and try not to worry about it all? I know that it has to be done regardless of my concerns. I just can't believe she has cancer. Of all the things I had considered, I honestly never thought this would happen to her. Only 10-20 percent of the patients develop it. When you think about how small the liver/bowel transplant population actually is it just seems so rare that it could happen to my Ashley. I am trying to learn enough about the cancer and its treatment to at least be knowledgeable enough to follow along through her course. My mind is just so tired and I am having to go over the same things again and again before it makes any sense to me. I pray that I will be able to get a good understanding of the disease and how it is to affect my Ashley so that I may help her fight it by making the best decisions for her. At this time in my life I am all out of strength and what little bit I do have is not of me but it is coming from the Father.

Tonight as you remember to pray for my Ashley would you please include a few others. My Allie is so very sick. She will miss school again tomorrow. It was so hard to leave her last night knowing how ill she is. She is weak and running fever. Her throat is soar and she is so hungry but it hurts too bad to swallow. I would appreciate any prayers you would offer on her behalf. Some of Ashley's transplant friends are very sick and struggling this week also. Davian, Gabe, and Skyler could really use your prayers as well. This is such a hard road and I am reminded daily that it is not mine alone to walk. There are several other families who hurt and struggle for their children as they try to give them a chance to live this life as well. We are a close family in the halls of this PICU and we need to lift each other up in prayer daily. Your faithfulness to pray for our family is making such a difference in our lives. Thank you for caring enough to come again and again. You are all so loved. Trish

We are on our way to have the PET/CT scan done and from there she will go over to the OR to have her permanent line placed and then have her bowel biopsy done. I am expecting be down for at least 2-3 hours before making it back to our room. Once of the procedures have been done I think we will begin to feed her again and then tomorrow morning we should begin the first round of chemotherapy. I have not seen the oncologist today so I am not entirely sure of what his plan is.

As long as I am holding Ash then she is perfectly content. If I lay her down to type, go to the restroom, get a drink, or anything else then she begins to cry and she sounds so sad. She got so used to having her daddy around and he didn't take bath room breaks or type very often. Today she is letting me have it and I think she is hollering for him to return so that the two of them can continue becoming permanent parts of the recliner. Unfortunately for her and I the week days are full of hustle and bustle, procedures, doctors, nurses, therapists, and the like. I hope to get a little nap in this afternoon while she is waking up and recovering. I guess we will find out if she is going to allow me too after while.

Oh well, I am going to go load her up and then we are off to the other side of the hospital. Thanks for checking on us. God Bless.

Dazed and confused are the perfect words to describe my state of mind this morning. This whole past weekend seems like such a blur. I keep wondering if we really did participate in "the amazing race" and pull off all that we did in such a short amount of time. From the moment Dave arrived in Omaha on Thursday evening to his leaving at 4:30 this morning I don't think we really even had an opportunity to really talk about all that has happened and about all that is going to take place. All I know is that when I arrived back at the hospital last night the last thing I wanted him to do was leave us here this morning. My heart was broken as I kissed my Blake and Allison on their sickly little heads goodbye and then rushed into the airport to try and figure out how to get around in there. So having Dave leave this morning was just another heart break in my growing list of them. He wanted to catch a 4 hour nap in the waiting room on one of the couches, but I just needed to feel his presence in Ash's room with us. I wanted to make a place on the floor for myself to rest and have him sleep in the recliner and Ash in her crib, but at first he was not going to have that. So his solution to our sleeping arrangement was to climb into Ashley's crib and cuddle up next to her and allow me to sleep in the chair. Although it was very cute to see this daddy tucked in next to our little pickle it was not comfortable for very long. I eventually pulled him out of the crib and tucked Ash back in to the crib, Dave in the chair, and myself on the floor next to his chair. It only took a minute for us to figure out the perfect solution. I tapped my hand on the side of the recliner and he instinctively hung his over the edge. We then drifted off to sleep in the familiar way we do at home by holding hands. It felt so very reassuring to know that he was there with me and Ash. 4:30 came all to soon and as he slipped out to go to the airport Ash and I both woke up and I have spent the rest of the morning cuddling our baby girl trying to get her to fall back asleep. She is finally resting in her crib and I have been able to slip to the bathroom and get dressed.

When I left on Friday I thought we had a definite plan lined up for today, but this morning it just seems to be all confused. No one knows if they plan on taking Ash to surgery to have her line replaced or not, but I am refusing to allow them to use the line that is in to begin the chemo. The line is loose, has almost been pulled out, and one of the ports is clotted off with some old blood because it was not flushed properly. It just looks like an infection waiting to happen. They have already begun running the contrast for the scan into her and have turned off her feeds. They hope to have us in CT by 12:30, and I thought we had a bowel biopsy scheduled for 1:30. I would not be surprised if it gets canceled in the midst of all of the confusion with the other procedures. All I know is that this is the start of a very long week for my sweet Ashley and myself. I am nervous about the chemo. As I read the side effects of the different components of it I am not feeling very confident. These drugs are so dangerous and it seems as though we are gambling with her life once again. I realize we have no choice but in the end it is my name that is signed on all of the consent forms and I am the one who will have to live with the knowledge that I agreed to allow them to do these things to our daughter. It is such a heavy burden I carry. The last consent form I signed resulted in a cardiac arrest and the near loss of our baby. Those memories are not fading as quickly as I would like for them to.

During this time I can feel my faith being tested, being tried and being built. So often I hear people talk about how strong my faith is. The honest truth is that I don't feel strong. My faith is not some amazing thing. It is just a simple trust in the One whom I believe gave this life to me. I am helpless to change the situation that I find my family in today, but I placed my trust in One who is capable. I am helpless to change the state of my Ashley's health, but I placed my trust in One who is capable. I am helpless to bring my family back together, but I placed my trust in One who is capable. Without my simple faith I have nothing. My prayer today is that I will have enough faith, a faith the size of a mustard seed, to move this mountain that stands before us.

Thank you for your prayers, your support, your friendships, and your concern. So many of you have opened your hearts up to our baby gherkin and we truly appreciate the time you spend here on this site and in prayer for our daughter. You have blessed us. Take care. Trish

I apologize for not writing something sooner. The fact is that I have learned that Trish is a much better Mom than I am. I don't know how she does it. I really don't know how she gets the time to write those wonderful posts that she writes. I have held and rocked that Gherkin all day long. I only put her down a few times just long enough to go to the bathroom. I now know why when I talk to Trish at night I often find she has not eaten anything. You don't get a chance. All of the nurses are telling me they don't know how Trish does it either. I was walking around the room holding Ash and even though she is a Gherkin, she is not a tiny Gherkin anymore. She weighs almost 20 pounds now. I know she will be glad to see her Mom walk through those doors tonight. I have enjoyed my time with her. She is really great and full of personality. I know when she learns to talk she is going to be even more of a mess than she is now.

I am concerned for her tomorrow. She will have a busy day. They will do surgery on her to place the new central line and then she will begin Chemo. However, as concerned as I am I think she will do well. I believe and hope I am right, that the hard parts are behind her. Trish should be back in Omaha around 11:30. I think she had a pretty good weekend with Blake and Allie. I bet it was great for them to have her there. I am going to head back in the room and check on that little pickle now.

DAVE

Ashley has had another lazy day. She just sat in my lap all day long. She would not let anyone else hold her and she would not lay down in her crib. She just wanted to sit on her Daddy's lap. It is probably a good thing that I am not the one here with her full time. If I was I would probably grown barnacles on my backside. The nurses would all be begging Trish to come back because I would be pushing the nurse call button everytime I needed a drink or wanted the lights turned off. It's a good thing Sammy was here to run errands for me. He said he was here to help with anything I needed, so I asked him to rub my feet and he had to draw the line. I really have enjoyed having him here to talk with.

Ash had a few tough episodes since I have been here. They have had to re tape her central line 3 times. She absolutely hates this. Not because it hurts, but because she has to be held down and restrained to get it done. On Monday they plan on putting in a permanent line so my prayer tonight is that the line she has now can just hang on through tonight and tomorrow. I am going to head back to the room to see that little Gherkin now.

Goodnight,

DAVE

I woke up early this morning to prepare Allie for competition and could not believe that I was here and not there. What a long day yesterday was for me. From rounds, to meetings, to the airport, to the plane, to the other airport, to the hotel, to Target (yeah!), to the hotel, to wrestling throat lozenges down my kids throats, to tucking them into bed (with hospital masks on), to sitting down and realizing I was here and not there. Whew! I could not sleep. I sat and stared at two of the most amazing people I have ever known. They slept and I cried. They slept and I prayed. They slept and dreamed of days when we would all be back together again.

Both Blake and Allison are very, very sick. They have high temps, horrible coughs, no energy, congested noses, and achy bodies. They just feel yucky and I wish I could make them feel better. They have never been this sick before, but they have never been in school before either. I had home schooled since Blake was 2 years old and this is their first year in school with other students. They are just passing it around to each other and Blake was one of eight students out of class on Friday. The thing that concerns me about witnessing this is that in yesterdays meeting our oncologist told us that we would become very close with our school nurse. Once Ash moves home if there are students in their school who are out because of illness then we will have to be notified and our kids will not attend school that day in order to protect Ashley. Life is going to be very different for a while once she comes home. She is just so fragile that we must take extra precautions to protect her.

Monday will be the beginning of a tough road for us in Ashley's recovery. She will go down to surgery to have a permanent line placed in which to run her chemo through. Then she will go through an exam that is a lot like a CT but it will be of her entire body and they will place a dye inside of her to make any "hot spots" show up. The hot spots will be places where the cancer cells are growing. We know of 4 tumors in her lungs and since we know there are 4 it is believed that there are probably others that were just too small to show up under conventional CT. We need to identify the hot spots so we can monitor how well the chemo is killing them. After a couple of other tests they will begin her first round of chemotherapy. We expect her to become very weak and very nauseated as a result of the chemo, but they told us they have a very effective drug they use to try and control the vomiting. I have no idea what will happen to her feeding situation. I pray that we do not lose ground in this area as a result. I pray that she will not pick up any type of infections while we are suppressing her immune system even more. She will be in total isolation and we will expose her to as few people as possible during this time. If all goes well during this first round of chemo then we will attempt to get her out of the hospital as soon as we can. We will have to stay for 3 weeks and then if no setbacks occur and she tolerates it well they will have us go to our apartment. We will stay for the next round and do it on an out patient basis. If all continues to be well and she maintains her full feeds, no infections, no viruses, and her fluid balance then they will allow us to bring her home to Texas. We will complete the remainder of our 18 week course in Dallas or Houston on an out patient basis. As frightening as the chemo and the effects of the drugs are we are in agreement with our transplant team that we must attack the cancer quickly and not risk going into rejection. If Ashley's bowel goes into rejection then we will lose our battle and this is not a risk we are willing to take. The bowel does not recover from rejection like the liver does. If we lose it then we have lost it all. I know in my heart that God has done amazing things inside Ashley's body in preparation for us to fight this cancer. Things have occurred that are no doubt without explanation other than knowing that it was His hand and Him alone that have accomplished them. In the end of this journey our prayer is that God will be seen all over Ashley's story and that no other explanation will be possible except that He had a plan for our daughter and our family through each and every chapter.

I did share with the kids that Ash has some bad cells called cancer in her lungs and that they look like little dots. I told them we were starting a new medicine on Monday to try and kill them. I asked them to pray about the spots and to pray that all would go well so that Ash and I might come home soon. We did not go into any more detail than that. I do not want to scare them or to burden them, but at the same time we feel like we need to be the ones who share with them about it. My fear was that they would hear about it from someone at school or church and I did not want them to feel as though we had hidden things from them. I think they understood and took the news very well. Please pray for Blake and Allie too. They carry HUGE burdens on their hearts everyday and it is not easy to have Ash and I living so far away. Unfortunately they will not be able to visit Ash during this first round of chemo. They have not seen her in 4 weeks and they will not be able to be around her for at least 3 or 4 more. This is not going to be easy. They miss her so very much.

I apologize for the length of this post. I understand if I have lost some of you along the way. I still have so much more I could share about this next chapter in my Ashley's story, but the important thing I would like you to know is this: We are not angry. We are not bitter. We are not backing down from this. God is good. He is faithful. He has a plan for our baby and we believe that He will use this cancer in her life for a purpose. The fact that we can not see it right now does not weaken our faith in knowing it is there. Ash is strong and she is amazing. She can do this and I will be there holding her through each and every moment. Thank you for your prayers. They are the most treasured gift during this time in our lives. We love our Ashley and we believe in her. Take care and may you enjoy a weekend full of rest. Trish

We all had a very good night last night. Ashley tossed and turned all night, but I didn't mind because each time she woke me up was another chance for me to look at her and count my blessings. The weekends are pretty slow around here. I think we will spend the day rocking, reading books and my handing toys to Ash and then she will throw them on the floor. There are no changes to be made today. Ash is looking great. If the cancer had not come she would have been released from the hospital. She is on full feeds, doing great, breathing great and she has accomplished all of her goals for being released. So we will stay around a bit longer and see what the next few pages of Ashley's Story have to say.

DAVE

Trish and I were sitting in our room this morning and I saw a man walking by Ashley's door. I was just about to say to Trish, hey look at that guy out there, he looks like Sammy. Just before I spoke the man came into our room and looked right at me. I said Sammy?? and he just smiled and said surprise. I asked what he was doing here and he said he came up to spend the weekend with Ashley and I. He knew I would be alone with her all weekend and thought that I might need some help. WOW!! I was blown away. That is one great friend who will leave his family and fly 700 miles to come sit with me and the Gherkin. Thank you Sammy and thank you to his family for the wonderful surprise. He was able to sit with Ash while I took Trish to the airport and he did a fabulous job. I think Ash really likes him.

Our meeting gave us lots of information. Some good, some not so good. The "weenie cancer" is not as bad as it could be, but also not on the completely "weenie" side. I won't share all the details right now, but will tell you that Ashley will begin chemotherapy on Monday or Tuesday. It is an 18 week course so she still has a long way to go.

Thank you for checking up on her, I am sure when Trish gets the chance to post she will say more.

Goodnight,

DAVE

Hi Ya'll! Wow, what a week I have had. As my mommy and daddy look back over it they stand in awe of all that God has done and is doing in my life. They really threw as some curve balls(good enough that my brother would be impressed with their arm!), but my Father has been faithful and I know He will continue to be.

In case you haven't heard my daddy is here and that makes me SMILE. I love this guy! As I snuggled in close to him, I heard his voice and smelt his yummy cologne and all of a sudden I decided to wake up and play. Thats all it took for me to snap out of whats been holding on to me over the last couple of weeks. Well, it was that and a whole lot of prayers from all of you. I could not be doing all of this without all of you. I love you guys and I can't wait to meet you some day if not in Texas then for sure in Heaven!

If you look at me in person or on paper this morning you would never guess that some really ugly things are inside of me trying to take me away from my mommy and daddy. I decided I am going to do all that I can to keep it from getting me. If I can slay giants left and right for the last 18 months then I can surely chew this "weenie of a cancer" up and spit it out! Rex, I'm going to invite you to my cook out celebration so you can help me "roast" a few in honor of beating this.

This afternoon my mommy and daddy have a conference with the doctors to decide just what I have to go through to get out of here and back home to Texas. I heard some really scary things during rounds this morning, but I know that God has bigger things is store for me than all of this. I just have to keep doing my part, my mommy and my daddy have to stay on their knees, and if you are willing to stay on yours in prayer for me then I think I can beat this thing.



I prepared a little something to show you all how much I've grown and just how very blessed I am. Hope you enjoy. Love, Ashley

I left Longview late last night and drove into the wee hours of the morning to get to Oklahoma City last night. Trish and I had some lengthy conversation during those wee hours. Trish began to prepare me for what I would find when I arrived. She told me that I would not find Ashley when I arrived. "She is not there Dave" I want you to be ready because she is not the happy playful baby you are used to. Trish knows my heart for Ashley and I know she was trying to protect me from the hurt. I was heartbroken as she described in detail the lack of interaction Ash is having with the world around her. She described how she screams and cries constantly and cannot be consoled. She described how Ashley's head was cut and bleeding because Ash has been clawing and scratching herself. She told me of the bruises on her head because she thrashes about in the crib and hits her head on the bars. As we discussed the Ashley I would find upon my arrival I felt my heart breaking.

I arrived at my destination and got to see some In laws, a nephew and a niece I have not seen in 7 months or so. I was only there for a couple of hours before catching a plane to Omaha this morning, but I was so thankful to get to spend some time with them. I layed down next to my niece and listened to her talk and tell me everything until I finally drifted off to sleep. I am now well caught up on her school and each and every pet that every family member has. It was so late I did not get to see Tommy, her gray cat, but I did get a wake up call from him around 5:30 this morning. I hopped on my plane and arrived in Dallas early this morning. Once in Dallas I called Trish to check on her and Ash. Our conversation picked up where it had left off last night. Trish again began to try to prepare me for an Ashley that was not the same as the one I left at Christmas time. She described how she will not make eye contact and she is completely unresponsive. She told me that Ash won't hold toys and has no interest or interaction with anything or anyone. She described the seizure like condition I would find Ash in and told me of how Ash was beginning to have strange seizures in her right eye. Trish told me of how she could not lay Ashley down without her screaming and crying in discomfort. Trish told me of how bad her back and feet hurt from standing and walking the room trying to console Ash for the last 13 days.

Keep reading because this is where my story starts to get good.

I had a long layover in Dallas so I found a spot to lay on the floor while I waited on my plane. I closed my eyes and said a simple little prayer. I asked God to please allow me to see my Gherkin a tiny bit before the weekend was over. That was it nothing fancy, not long and eloquent just a simple plea that I might see some sign of my Gherkin before I had to return home. I then began to sing in my head (it sounds much better in there) Father, I Adore You.

I arrived in Omaha safely and when I entered the room I found Trish standing up rocking Ash trying to console her just as she has almost constantly for the last 13 days. Ash was whimpering and crying and acting just as Trish had prepared me for. Trish was talking with a visitor so I quietly slipped in and took Ash from her arms so she could have an easier conversation with her guest. I sat down in the chair with my Gherkin and began to play my silly games with her. As described Ashley was not there. She thrashed her head about and would not look at me. She would not interact with me or the toys I had for her. Her arms shook and trembled as they randomly moved about. I continued to show her toys and play in spite of this and an amazing thing happened. After about 5 min I reached under my shirt and pulled out my necklace. Ash always loved to pull on it and try to rip it off my neck. She saw it and with a trembling unsteady hand she reached for it. I got Trish's attention and she looked over and could not believe she was watching Ash reach for something. I took my necklace off and held it in front of her and this time she reached out with both hands. This time her hands were a bit more steady. Over the next 5 min the tremors in her body were gone and she was intently playing with whichever toy I gave her. Trish was amazed. Then it happened, the biggest grin splattered her face. It was brief , but was there. And then another grin and she began to laugh out loud. Over the next 15 min we sat and played with a lot of toys and she laughed for me another 3 separate times. At one point we looked up and there were 4 nurses standing at Ashley's door wondering what was going on. They gathered because nobody was hearing Ashley scream.

She has been quietly laying in her crib for 20 min now while I typed this Blog.

Thank you God for answering my prayer above and beyond what I ever expected.

I am going to go now, I have a Gherkin to play with.

DAVE

Ashley is anxiously awaiting the arrival of her daddy. Her mommy made her take a bath this morning even though she stated through her screaming that she didn't care if she was stinky. She continued to proclaim in protest that he would love her anyway, but unfortunately for Ash her mommy is bigger and she can make her do things even if she doesn't want to. So now we have a sweet smelling baby to cuddle with all day long. I promise to have Dave post a few new pictures tonight.

Our night was pretty much the same as the others have been this week. She cried and whimpered "mama" over and over again. Even as I held her and rocked her I could not convince her that it was going to be ok. As we drifted in and out of sleep I would often wake with an overwhelming feeling that I needed to pray. So I am not even sure what I was praying about, but at some point during my conversations with Him I would fall back to sleep. This morning Ash has been a little more consolable. She is actually sitting calmly on my lap watching me hunt and peck at the keys as I try to type with one hand. She just reached for Blake and Allie's picture and is now rubbing her little hands across their faces. I am so happy to see her do this. Ash has been completely uninterested and unresponsive to anything this week. This is actually the first sign of recognition towards something other than me that I have seen. I have been so frightened by the loss of her personality. I have a really big smile on my face right now watching her push them around the table. Ashley's screaming has seemed to have robbed us of her spirit. She has disappeared into this world of agitation, and I am desperately fighting to pull her back to us. There is so much going on inside of her body, and there are so many medications being used to battle it that we are losing parts of her in the process. I am determined to pull her through this period of her recovery. She will be given every opportunity to have the best life possible. We just have to kill the cancer first, and we will. Last night one of our favorite doctors spoke to me in our room and told me that if this cancer stays out of her brain(and it looks like it has so far) then it is just a "weenie type of cancer"(thats a direct quote!) and she is much, much stronger than it is. I know without a doubt that it is the prayers of thousands across the world that are giving her the strength she needs. I know He hears them all and I have a peace even in the middle of my disappointment that He is working in my Ashley's life.

I am going to let her type a little something to you all because my arms are tired of wrestling her. "refrt rwgnkoic3e9m9m0xm0xxzsxss" I'm not exactly sure of what she was trying to say, but I do see a couple of x and o in there and I guess she just wanted to tell you all how very much she loves you. Thanks for helping us carry this very heavy load. You are all loved not only by our Ashley, but also by her mommy and daddy. May you feel his spirit upon you today. God bless. Trish

It has been such an exhausting day. I have not put Ash down since we returned from the procedures this morning. There has not been one moment for me to sneak away from her to post any news. The good news is that we are making it. The day is finally coming to a close and He has allowed us to make it through another tough one. I wish I could tell you that all is well with my Ashley and that she is now resting, but she continues to cry and scream. Huge tears roll down her cheeks and I do my best to wipe them away as quickly as they fall. It has not been an easy one. I am afraid we may have a lot more tough ones ahead before the good ones return.

I am so thankful that the preliminary reports on Ashley's central nervous system have returned to us with no sign of the cancer. The pathologist has not yet viewed the cells under the microscopes but we hope to know something by late tomorrow or early Friday. We have a care conference scheduled on Friday afternoon to make decisions regarding treatment options and to learn about the possibility of rejection. This is new territory for us and we have some difficult things to face. I would like to ask you to pray for us about an unspoken request that has developed for us tonight. I think I have stumbled on some answers about what has happened to my Ashley to cause such an extreme change in her behavior. I am seeking and praying for direction as I do some research and prepare to share my concerns with our team. I am not comfortable giving any detail because Dave and I have a lot of decisions to make together tomorrow, but I would really appreciate your prayers.

My heart breaks for Dave because I know how his will break the moment he sees our Ashley crying. It is not going to be easy for him to watch her struggle. He so badly just wants to be here with her to hold her and tell her how much she is loved. He is traveling through the night to make it into Oklahoma City where he will catch a plane at 8 in the morning. My mom and Allie are very sick tonight. Blake is starting to feel better and he decided to stay home and take care of his nan instead of spending the night at grandma's house. I am so proud of his compassionate heart. He could not bare the thought of her feeling so sick and being alone tonight. Allie went to grandmas so that she could take care of her. I am afraid it is going to be a tough weekend for Al as she has to compete in Nationals with her cheer squad. I am still planning on going to Dallas this weekend to see the Blake and Allie. It will not be easy walking away from all that is going on with Ash, but I can not take this time away from the older kids. They have been counting on it and I am looking forward to just hanging out with two of the greatest kids in the world. I can't wait to watch them sleep. I can't wait to put my secret kisses on their foreheads. I can't wait to hug them so tight it hurts. I guess I will be wearing attractive, yellow masks all weekend hoping not to catch what the kids have. I can not get sick. If I am sick then there will be no one to take care of our Ashley. Sometimes when it rains it really pours. I know that we will survive all that we are struggling with. We will make it to better days. Happier days when we are all well and are all together. I have to believe that. God is not finished with the plans He has for our family.


Tonight my heart is heavy with many, many things. It feels as though the future is uncertain and out of my control, and it truly is. It is only by His grace that tomorrow will come and I have never been in control. He guides us through from day to day, and I have faith that He will continue. Your prayers have been so amazing. Your response toward my Ashley's struggles has touched me so much. I thank you for continuing to remember to take her to Him. I pray that she and I will rest in His embrace tonight. I could use a little peace if I am going to continue making it. Good night and may God bless you. Trish

Good News.

The preliminary info shows a clean MRI of the brain and no cancer cells found in the cerebral spinal fluid. Based on her clinical presentation (screaming alot) some of the Drs don't believe the preliminary results so we will see what happens as more info becomes available.

Plan:

We will decrease the immunosuppresion therapy and take another CT after 1 week. If the tumors are decreasing in size this will be a very good thing. The hope is to allow her immune system to fight this thing the way God designed it to. We pray that she can do this and that we don't risk her new organs.

DAVE

The mornings procedures are over and the girls are back in the room. I know very little. I know they did the spinal tap however the other procedure yielded only part of what they were after. We still don't have any results from today's tests or yesterday's MRI. We will let you know more when we know. Thanks for lovin' a little Gherkin today.

DAVE

Sleep did not come for me. I remember seeing the clock into the early morning hours and then the mid early morning hours and then my Ashley began to scream and growl around 6:00. I held her and tried to comfort her. I have no idea what is going on inside of her, but it can't be good. She is hurting. Screaming, growling, ripping out her hair, grinding her teeth. There are other behaviors I just can't bring myself to type because the reality frightens me so much. We age going in to the OR at 9:30 this morning. To be honest with you I am terrified of what is coming our way. Please pray for my Ashley. Love, Trish

I'm sorry that I have no words to share with you tonight. It hurts to bad to think. I try and try but all I know is that I hurt. I hurt for her. I hurt for Blake. I hurt for Al. I hurt for Dave. I hurt for me. The tears don't stop. As I rock this bundle of baby girl the tears fall from my cheeks and onto hers. She wipes them away for both of us. My cheeks are stained and so are hers. I know she wonders why I cry. She looks at me as if to say, "What are you doing? You are getting me all wet!" I just can't stop. Maybe its fatigue? Maybe its not. Maybe its fear? Maybe its not. All I know is that it hurts so bad I curl up in the chair and hide myself under the blanket hoping no one will come in and find me this way. She sleeps and I cry. Cry because I feel as though this one may be the one that is just too hard. What if it is in the spinal fluid? What if it is in her brain? What will we do? I am just so scared for her, and I am just so scared for us. I don't know how we will tell Blake and Allie just how sick she really is. I can't imagine breaking their hearts. So tonight I cry for all the things that have been confirmed and the ones that have not. I cry from my broken heart over her broken body. If the world only knew how truly precious she is. If only you could see what I see when I look at her. Tonight is proving to be harder than I thought it would be. I just want to skip all of this and know the answers so that I may know how to fight. I'm sorry there are no words. I'm sorry I only have tears to offer you tonight.

Dear Ashley,

There will never be enough words, enough pages, enough moments, enough time to tell you how very proud I am of you. As I watch you sleep my eyes fill with tears. You are so fragile, but yet you are so strong. Ash, I love you. I love you more than I ever knew I could love another. I love every part of you, and I pray that as you grow you will come to understand how very beautiful you are. Each mark, each scar, each boo-boo you wear comes with a story. A story of survival and a testimony. A story that tells of His mercy. A story that tells of His love. A story that tells of His goodness. Sweet Ashley Kate if you only knew how precious you are. If you could see how wonderful you have made our lives. How do I tell you of all that you have done? How do I put into words the things you have taught this world? He is using you to melt our hearts, to break down our walls, and to teach us how to pray. The job He has given to you is not an easy one, but He knew that He could trust you with it. I know it hurts, and I know there are hard days. I know you get scared and that you just want them all to leave you alone, but mommy promises you that I will be with you on the hard days. I will be there to hold your hand. I will be there to wipe away your tiny tears. I will be there to cuddle you close and rock you to sleep. I will be there to pray for you. You can do this baby girl. I know you can. You are not alone. You have a daddy who longs to hold you. You have a big brother who adores you. You have a big sister who anticipates playing with you. You have a mommy who cheers you on as you fight, fight, fight. You have so much to keep fighting for. He is not done with you just yet. Life is so precious Ash and you have taught me that. Hang on to yours sweet baby. We are all here with you and we are not leaving without you. I love you Ashley Kathrine Adams. You were my hearts desire and you will always be our baby "pickle". Happy Valentines Day Ash. Love, Mommy

Almost this time yesterday I was driving down the road and my phone rang. I answered to the sound of my wife crying. Sobbing... I immediately asked what happened and after finding out I was driving she asked me to pull over. Again I asked what was wrong and she insisted that I pull over. I thought this was the call, I thought I had lost my Gherkin. I persisted and she proceeded to tell me about the cancer. This news is horrible, but it seemed so mild compared to what I thought was coming. I am so thankful I did not hear the words I thought were coming. It is a blessing to know that she is still here and she continues to fight. I will continue to learn from her and her mother each day spends on this earth with us.

Change of subject:

Tomorrow is Valentines Day. A day who's purpose is to celebrate the love we share with others (as well as a conspiracy brought on by the flower shops and evil candy makers) This will be a unique Valentines Day for Trish and I. It will be the first time we have spent this day apart. But, you know what... It's OK. This year more than ever I know that it is not about cards and flowers and stuff, but it is about the love she has for me and I have for her. I can honestly say that I have learned to love my wife more in the last 4 months. I have seen her character unfold on the pages of Ashley's Story. I have seen her growth in Christ. I have seen her unfailing devotion to a little pickle. I have heard her laugh and heard her cry and heard her praise the name of Jesus more than ever. I have come to respect her on such a higher level for who she is and who she has become. So, tomorrow will not bring a card or a box of chocolate, I will not get to hold my wife's hand, I will not get to look into her eyes, I will not get to wear cologne and woo her with my scent, I will not get to run my hand through her hair, I will not get to place a comforting kiss on her head letting her know we are in this together, I will not get to see her give Blake and Allie Valentine presents, I will not get to hold Ash, I will not get show Ash how much her daddy loves her instead it will be filled with a love that runs deeper than ever before.

I LOVE YOU TRISH,

"Roses and raindrops and chickens with whiskers."


One thing I have learned from Ashley's Story and I hope you guys have as well is that there is no one on this earth more important than my spouse. I do not have a better friend or stronger ally.

DAVE

Ashley will be going down to MRI at 4:00 today. They told me it would take about 45 minutes and that they would not have any results for me until tomorrow. They are looking for nodules in the brain. I am a little encouraged that they did not find any on the CT scan last week, but I know that it does not show soft tissue and the MRI will.

Its not very fun being me today. I walk through the halls and not many people know what to say. Most of them just ignore me, but a few of them give me looks that convey just how serious this must be. I know its not good. I can tell by the way they are all reacting to me.

The most concerning part to me at this point is the change in my sweet Ashley's personality. The behavioral changes scare us all. I knew there had to be some reason for all of her screaming and now I just pray that she was not reacting to the cancer. Today she isn't screaming. It seems as though some sort of peace has come over her and all she wants to do is rest. I wish she would smile or laugh or play. I really need to see that part of her come back so I know that all will be well. I know they suspect the cancer to be the cause of her recent changes. I know they think we will find it in the brain. I just pray and pray that what everyone is thinking is wrong.

The good things that I have found today are these: Ashley is not sick with an infection at this point. Her lungs are clear and she is breathing very well. She is on full feeds(something I am still in amazement over!), and she looks really good. If there was ever a time that she had to get cancer then now would probably be the best (if that makes any sense at all?).

Tomorrow's procedures will be difficult on her. I just spoke with the oncology assistant and signed the consent. The bone marrow biopsy is painful and she will not be happy once she wakes up. The spinal tap makes chills run up and down my spine probably because of the line of work that we are in. I just want to wake up from all of this and realize it was all a bad dream. Remember the dream I had about waking up at home the other night? How I wish that was our reality and not just my fantasy.

Needless to say as her mommy I want to make all of this go away. I don't want for her to endure any more pain. I just want her life to be filled with happy things. I wish I could do more than just rock her. My kisses on her fore head while she sleeps can't take all of this away from her.

It doesn't seem real to me that I am typing about cancer. I thought we were coming to Omaha for transplant. Sometimes life can surprise you and this cancer sure has, but so did the cardiac arrest. Who could have known? My prayer is that in some part of His plan He intends to use these surprises in Ashley's story for the good of others. It is really hard to see how this could all be good right now, but maybe someday I will look back and it will be clearly seen. Thank you for your encouragements and your prayers. I don't know how to do this on my own so I am really glad He gave you all to me. Take care and may God Bless you today. Trish

Fear, panic, chaos, confusion, desperation, cancer, I just don't believe these things are of God. I refuse to allow myself to believe that He would be any part of these things. I do believe He will be a part of the way we handle what has been given to us. It is up to us to allow Him to do what He will in her life and in our reaction to this cancer.

Tumors, T cells, B cells, bone marrow, lymphomas, chemo, spinal taps, are not in my area of expertise. Pony tails, baseball games, hair bows, Play stations, chocolate chip cookies, polly pockets, birthday parties are more my area. I shared with Dave just last week as he once again tried to teach me how to post pictures on the website that I honestly don't believe I could learn one more thing. There is no where to store any thing new in my brain. I am all tapped out. So as I met with the oncology team this morning to "learn" all about our options I just stared back at them. Nothing is registering with me. It is all so very foreign to me at this point. Cancer might as well be a remote island on the other side of the world. I have been dropped here and I haven't learned the language yet. I am lost and I don't have a map. Today they will do an MRI of Ashley's brain. They are looking for tumors. Tomorrow they will do a spinal tap and a bone marrow biopsy. They are looking for cancer cells in her Central Nervous System. By the end of the week we should have a plan in action and a direction to follow. If we can avoid finding the cancer in her CNS then we have a really good shot at beating this thing. If it is there then we will begin an aggressive form of chemo therapy as early as next week. Right now, we have decreased her level of immunosuppresants to give her body a fighting chance against the cancers. We are now walking the very fine line between rejection and cancer. It will not be easy to stay on this line that has been drawn in between. There will more than likely be periods of time where we fall off on the side of cancer(like today) and then times when we step to the side of being in rejection. The ultimate goal is life. If we have to lose an organ to beat cancer and continue living then that is what we do.

I think I shared with you a conversation that Dave and I had the 14th day of Ashley's life. I called him and said, "I think God may be closing the door. They are telling me we probably have no chance of ever becoming Ashley's parents." He answered me, "Trish, what if He isn't closing the door but He is saying to us, "How far will you go? Are you willing to take one more step?" we jumped in the car and began taking that one more step which ultimately led us to becoming our sweet Ashley's mommy and daddy. May I share with you that I am willing to take one more step, and if I am asked to take another and another and another then I will. There is nothing I will not do for her. Ashley's mommy loves her. Her daddy loves her. Her brother loves her. Her sister loves her. Her grandmas love her. Her grandpas love her. Her aunts and uncles love her. Her cousins love her. Her church family loves her. Her friends love her. Her prayer warriors love her. Her nurses love her. Her community loves her. Her Creator loves her. I have never come across one person who has "met" with my Ashley's story that did not love her. I owe it to you, to them, to myself, to our family, to our volunteers, to our church, to our God, and to our Ashley Kate to get strong. I will do this with her. She deserves a mommy who will not crumble at the thought of cancer. She has come through worse. Never in a million years would I have imagined we would meet with transplant surgeons, cardiologists, and now oncologists. He is really stretching me.

As I watch the snow fall outside our window I smile inside my heart knowing that if He took the time to create each of those snowflakes in their own individuality and if He knows just how many He is sharing with us today then I know He created every part of my Ashley's body and He already knows how many cancer cells are there for us to beat. We won't have to fight this one alone. He cares.

My fear, my panic, the chaos surrounding me, is not of God. He will do great things if we allow it to be done.


P.S.
Thanks Dave for the flowers. You made me smile and thats what you are good at doing. I look forward to holding your hand as you rock your baby girl on Thursday night. I love you.

I typed my last post a 5:30 with no idea of what the future would hold for my sweet Ashley. At 6:05 our surgeon came in with the results.

It is cancer.

I can't really do this right now. I have been broken and I am not sure how I will heal, but I know that I must gain some sort of strength for my daughter so that I might help her fight. We will know more in the morning. Thank you for praying.

Trish

So I have finally laid my sweet Ashley Kate down in her crib for the FIRST time today(hence I have not had a decent meal or a shower yet), and I have a few moments to share a few of my thoughts. As I was flipping through the pages of a devotional book I landed on this verse and it was just exactly what I had felt led to post about this afternoon. It is this:

" For I know the plans I have for you," declares the Lord, "plans to prosper you and and not to harm you, plans to give you HOPE and a future." Jeremiah29:11


I know my postings have not been especially encouraging or uplifting during this period where I have been lacking rest, but I am afraid I may have actually caused some who read my Ashley's story to become discouraged. If this has happened to you then I feel horribly responsible that I have not allowed you to see the Lord working in our hearts and lives even in this tough stretch of days. Please do not be discouraged by us or for us. We are truly blessed each and every day. God has used our Ashley's lives, struggles, and difficulties to do great things in our family. I would not be an honest person if I only shared with you the happy times and the easy days. This journey is hard. It is long. It is proving to be very challenging, but I am convinced now more than ever that He has a plan. I don't know what it is and I don't understand all of it. He doesn't have to show it to me. I just believe in my heart that He is still here with us and He is still working it all out. He has not forsaken us and He promised us that He would not. I trust what He tells me.

Ashley is still beautiful(even while she screams), she is still amazing( even while she screams), she is still worth every step of this journey(even while she screams). I have never, nor do I now doubt that this is all part of His plan. He is busy shaping me into the mommy that she deserves. Trust me, this is not an easy job, but I know it will happen. My Ashley was created to fulfill a part in His plan for this world and she is busy doing her part. I wish her hurts would disappear, and I want more than anything to put this part, this chapter behind us but apparently it isn't time. Again I ask you to not be discouraged by her struggles. My prayer is that you might be encouraged by her will, her strength, her determination to make it back home to her family.


I am going to cut this short for now because she is now awake and screaming again. I more than anyone want this part of the plan to end sooner rather than later, but I continue to talk to Him as I rock her and try to help her through it. Its not an easy stretch we are on, but the important thing is that we are still on the path, following the plan. I know far to many families who would do anything to trade places with us. So please let me encourage you to stay strong in your faith. Allow Ash to help you seek and search Him out to become stronger, and if she is not able to help you with that then I ask that you take a break so that she might not become a stumbling block to you. She loves you all far to much to cause you to become discouraged. To be completely honest with you I am learning that we are just beginning on this road and it is not going to be a short one. Thank you for walking along side of us this far and we would welcome your continued presence if you have it in you. If you don't, please know that you are loved for the time that you did commit to loving our baby and our family. We will never be the same. God Bless. Trish

So today I feel outnumbered. I have had no sleep in I can't remember how many days now, and I kinda feel as though I have been outmatched. Do you remember the story of David and Goliath? It kinda feels like I am in a remake of that. So here it goes.

David goes to check on his brothers who are currently in battle. When he arrives he finds them all intimidated by the Philistines and their giant Goliath. The Philistines are all lined up across the way and the giant stands there mocking them all. So here I am in Omaha and I can see the giant standing across the way mocking me. He laughs, he points fingers, he causes self doubt, he scares my baby and makes her scream which causes me to cry which causes her to cry which causes me to scream. It seems like the giant looks bigger by the minute and I don't know what to do. I have been waiting for David to show up and sleigh him, but I think that I am finally figuring out that God has intended for me to play this role. I never wanted to be a David. I have never felt qualified to be a "giant fighter". I just want to be her mommy. I am struggling trying to figure out just how I am going to knock this giant down. Guess what part of the story I seemed to have forgot? David didn't go there to sleigh a giant. He just went there to check on his brothers and to bring them a few things from home. When he got there the king tried to dress him up in a lot of fancy armor and give him a sword bigger than he was. David knew in his heart he didn't need the fancy armor. He needed God. So he looked around and found a brook, picked up a few smooth stones and went out to face the giant,but he didn't go alone. He took the faith that he had in the almighty God along with him. He stood face to face with that giant and allowed God to use him. So how does this relate to me? This whole transplant process is my giant. I never thought I would be called to go to the battle field and try to fight against something that was bigger than me, Dave, Blake, Al, and Ash combined. I really thought that the 5 of us could take on anything that came our way. I really believed that all Ash needed was to come home and she would begin to grow and thrive and be fine. The part that I left out was this; I forgot to consider that perhaps God never intended for us to just show up at the battle field to encourage others to fight the giants. I am learning that He must have seen something in me that made Him think I had the makings of a giant fighter. Something that if I would allow Him to lead, to take me to that brook and those 5 smooth stones that He could use me to sleigh giants. Trust me, today I don't feel much like a David, and I don't feel like I am winning this fight against our "Goliath". I feel tired, and scared, and alone, and like I am in the wrong place. The important thing for me to do now is not to get overwhelmed with what it seems we are facing, but to rely on His strength to throw those stones one after the other until He decides it is time to knock that giant down. It won't be my strength, but His that will fight the giant.

Ash has been miserable for 11 days now. She has lost her happy, playful personality. All she does is cry and scream. All I do is rock and rock. I don't mind the rocking. I actually love that part of it. What I do mind is that our Giant seems to be getting bigger and bigger and he is making my sweet Ashley go insane. She is on such high amounts of super powerful drugs that she is going nuts. I have talked to the team this morning during rounds and we have decided to take this week and try to get her back. For several days it seemed as though everyone's answer to help Ash was to increase her doses of drugs. I can not tell you how against this process I have been. I more than anyone want her to be comfortable, but this is not and was not the answer. They surgeon told me to brace myself this week. It is going to get worse before it gets any better, but we are now all in agreement that we have to reduce the amount of the drugs she is being given. When I talk about the giant we are facing, this week he will come in the form of severe withdrawal. Worse than I have ever seen her go through before. I told them I don't know how she could possibly feel worse than she does now, but they told me to get ready for it. She already screams, kicks, hits, flails, throw herself against the crib, scratches, claws until we are both bleeding, and cries uncontrollably. I can't imagine what else is in store for us this week, but I do know that as we face this "giant" in hopes of getting our Ashley back we will need to rely on His strength. I don't have what it takes to do this alone. I need Him.

Please pray that we can get some rest, that she will come back to us, that they will have the pathology results back in the morning, that we can fight this giant and whatever others decide to show up. I am feeling very weak at this point in our battle and I just really want to sit down and cry with her( oh yeah, I already have!). The nurses don't know what to do with us so they just try to avoid our room. Like I said, she cries, I scream, she screams, I cry. It really is a mess in our corner of the PICU. Hope He knew what He was doing when He signed me up to be a "giant fighter"! Thanks for loving us even on our weaker, uglier days. Take care. Trish

O.k. I am willing to confess that I have avoided this journal all day long. Why? Because I am struggling. Struggling with a lot of things today. When I look at everything that is going on in our lives right now I begin to get discouraged. I know its not right, but its honest.

I try to hold it all together. I try to not let things get me down, but after last night and our lack of sleep I just woke up really grumpy today. I tried to shake it off, but the later it got into the day the more grumpy I became. First thing this morning I am afraid I frightened our poor nurse who came in all chipper and simply asked me how I was doing. Wrong question to ask when I had been trying to get Ash back to sleep since being woke up at 4:00a.m. for a set of vitals. Can you imagine how difficult it is to sleep and to keep Ash asleep when someone is constantly coming in at all hours of the day and night? I know our nurses are just doing their job, and they all do it very well with a smile on their face but I am so tired. I just want Ash and I to have a full nights rest. Just once in 5 months. So I owe my sweet nurse an apology for my grumpy attitude this morning and for threatening to post a set of new rules outside of our door. Aren't I funny thinking I can make the rules in this place? Any way I tried to get happy and to see the humor in my lack of sleep but I just didn't ever get to that place. I hate to admit it but I just stayed grumpy all day.

So I have been too embarrassed to sit and post anything today because I knew that the grumpy would just spill out all over this page of Ashley's story and I didn't want her to see that I finally broke under all the pressure. Rather than type the ugly truth about the way I was feeling I just sat in our chair and rocked that sweet baby all day long. As long as I was rocking she was sleeping. If I stopped she started crying. Right now as I type she is laying in her crib being just as grumpy as her mommy. I know she is wondering why I haven't picked her up yet, but I needed to let you guys know why I was absent today. No good reason other than a bad attitude. Please forgive me. I promise to do better tomorrow and to wake up with a sweeter spirit than the one I hung on to all day today.

Thanks for understanding and forgiving. Hope you all have a restful night. Take care. Trish

Tonight as I was tucking Allie to bed we began to talk about next weekend. It is only 4 more days until I am in Omaha with my little Gherkin and it is only 5 more days until Trish is in Dallas with Allison. We are so excited that the time is so near. Trish is anxious as she has not been away from Ash one time, but I know that she is looking forward to spending some time alone with Allie.

Tonight Ash's feeds were turned off and she was taken down for another CT. She is very uncomfortable and they are checking for a stricture or other bowel obstruction. The bad thing here is the timing. You see no one is available to read the results of the CT until morning and thus Ash's feeds will be left off pending the results of the CT. It seems every time she gets to full feeds and the TPN comes off, it is only a couple of hours until something prevents her being fed. Tonight I pray that not only will she come off TPN, but she will continue to progress on her feeds and that her body would absorb the nutrient from the feeds. Tonight I also pray for Trish as today has been an emotional challenge for her. She longs to be home and we certainly would all love for that to happen sooner rather than later. Thanks for checking on Ash, I am sure Trish will let us all know the plans tomorrow after rounds.

Goodnight,

DAVE

Last night I had a dream. I don't know exactly what brought it on, but perhaps it was knowing the TPN was going to be turned off that caused me to feel as though we were getting one step closer to this actually occurring. Anyway, I woke up in a panic because I realized I had made a mistake. A really big mistake and it would not be an easy one to remedy. Once I figured out it was only a dream I have to admit that I was a little disappointed.

Anyway, last night I dreamed that they had actually discharged my Ashley from the hospital and told me we were free to go (I know that sounds as though we had been sentenced to this hospital stay, but sometimes it really feels as though we have been serving a sentence). So upon our "release" from the PICU I found myself tucking the children into bed and retiring to our bed with Dave by my side. As I laid down and closed my eyes something hit me. Where was I? I began to look around. This didn't look like my little one bedroom apartment. Things were just a little too comfortable. Had I actually gone all the way home to TEXAS? Yes! I had. I couldn't believe it. Somewhere in my "release" I had decided to skip our mandatory stay in our apartment in Omaha and had apparently boarded an airplane and had taken my sweet Ashley ALL THE HOME. This put me into a panic. I began to lose it. I could not believe that I had been so tired and so dumb founded by the news of our "release" that I had made the mistake of taking Ash home. This was not a good thing. The what ifs began to flood my mind. What kind of mother was I? There is no way she was ready to leave Nebraska. What if she had gotten sick on the flight home? What if she began to vomit her feeds? What if her labs screamed, "RED ALERT, RED ALERT" the next morning? Where was I going to take her to have her labs done? Surely once they all realized that we were not showing up at our clinic appointments then they would call someone and report that I was obviously unfit to parent this transplanted child. As the fear began to overwhelm me I all of a sudden began to laugh. Laugh uncontrollably. Boy, had I ever messed up. I have been consumed with thoughts of making mistakes with my Ashley once we were finally released. Forgetting a med, missing an appointment, losing a schedule, being late for PT, or OT, or some kind of "T", but in all of my worry about being capable of taking care of my Ashley I had never one time thought I would mess up like this. This one could not really be explained. As I struggled to get comfortable in my "favorite" chair it all became clear to me, I was not at home in my bed next to Dave with our Ashley tucked into her crib in our room. I was still in this stinking hospital room, in my uncomfortable, plastic recliner, and the nurse had just come in to wake up my sleeping princess to take a round of vitals. To tell the truth the reality of the situation was more disappointing to me then thinking I had taken her all the way home by mistake and proving to all my incompetence. Oh, well someday I guess we will make it there.

The good news I have to share with you this morning is that her TPN was just turned off and she is tolerating 50ccs of formula per hour. Only 5 more to go and then she will be at her full feeds. A while ago I shared with you a specific prayer list for my Ashley and it included these things: 1. I prayed that Ash could come off of the venitlator. 2. I prayed that she would STAY off of the ventilator. 3. I prayed that she would be able to tolerate her feeds, get to full feeds, and begin to grow. This morning I am realizing how blessed I am to have placed my trust in a God who does care, who does listen when I pray, who is in control, and who is involved in the smallest of details. I am blessed, and I am touched by His goodness. Thank you for your prayers for my Ashley Kate. You will never know the magnitude of the impact they have had in her life, in my life, and in Dave's life. Now we just have to tackle these silly "polka dots" in her lungs and stay infection free to earn our release. It's not impossible! She might just get out of here yet! Love you guys for loving Him enough to love her. Have a wonderful day. Trish

Don't you ever want to say, "Why me?". Aren't you angry with God for all that Ashley is going through? At some point don't you just want to say "Enough is Enough", "she deserves a break". I can't tell you how many times I have been asked these questions over the last several months. For some reason I was asked over and over again just last week. It almost seemed as though I was being set up. Each time the questions were asked of me I got a very odd feeling that made me want to run in the opposite direction. To be completely honest with you I haven't even thought of asking those questions. I don't want to ask Him, "why me", I don't want to stomp my feet and say, "enough is enough". I am not angry with God for all that my Ashley endures. More than anything I am humbled. I am humbled by the awareness that He is God and He will do what He will do. No amount of stomping, or screaming, or crying, or begging, or demanding will change the course of what He has laid out before us. I am not one who believes that I can tell Him to heal my Ashley. I am not going to sit around and try to figure out the whys of all that is happening. I don't guess I can really explain it any better than telling you this, I asked Him for her. I wanted this child. He gave me the desire of my heart when He allowed her to be brought into my life. No matter if He gives me a day or a thousand or ten thousand with her I am forever changed because of loving her. I know that He wanted me to have what I desired. He heard my cry and He granted me what my heart longed for. The very God of the universe took the time to listen to my prayers and for the first time in my life He became very, very real to me the day that my daughter was born. Please don't mistake the fact that I don't want to ask Him "why me" because I am super holy, or super spiritual, or for already having all the answers. I don't know what tomorrow holds for our Ashley and for our family. I don't feel incredibly spiritual at this point in my life. I just know that she was a gift that was given to me and that she can just as easily be taken from me on any given day. I don't have the luxury of time to waste on being mad at God for Ashley's struggle. I don't have enough days to spend them stomping and pouting about how difficult it has been. I have to trust Him at this time in my life. I need Him to make me stronger. I can not isolate myself from Him because the lonliness and the separation from Him would destroy me. If I were angry with Him who would I call on to take care of my Ashley. Who could I ask to hold her when I can't. I need Him too much to be angry with Him. Do I wonder every now and then why it has to be so difficult for her? Sure, I do. I wouldn't be a mommy if my heart didn't hurt over her struggles, but to question the One who created her and allowed me to love her is not an option for me.

There are many, many things in Ashley's life that I would change for her if He asked me, but the truth is that I realize He is working it all out for the good. He has not allowed us to hurt one day on this journey alone. If things had gone according to my plan for Ash's life we would have missed out on so very much. The struggles along this journey have brought a lot of growth and learning to David and myself. I believe Ashley's story is being written the way that it is to bring all of us to the place where we need to be. The place that we must be in to be used the way that we were meant to be. If I did ever ask, "Why me?" I would follow it with these words, "why am I the lucky one? Why did He choose me to be her mom?"

I guess the answer to that question is this, "Because He loved me, and He knew how much that I loved her." "Why me?" the real question is, "Why NOT me?" I am truly blessed.

I am pretty sure we have convinced our Allison that loving her hamster from a far is going to be better for all parties involved(her and the hamster). She is welcome to love her hamster and to visit her hamster, but it will have to live in the pet store. We are not going to be the proud owners of stinky, smelly, rat like pet. No offense to those of you who may own them and love them.

We have decided to allow Allison to have a malteese puppy. She is ecstatic! The only problem is that her puppy does not currently exist. It has yet to be conceived. None the less, she is excited and has placed much "faith" in a dog she met last spring by the name of Hope. Allison fell in love with this puppy last year and announced to us then that if she ever had a dog like Hope that she to would name it Hope. So now our daughter is hoping that the dog Hope will conceive and give birth to her new puppy whom she has already named Hope. In the meantime she is going to busy herself by preparing for her new puppy. Somehow she talked her grandma into taking her shopping for this puppy who is not even here. She came back from their trip with a hot pink hair bow, a hot pink collar with white polka dots, a diamond studded "H" charm to hang off of her new collar, a tag that reads: Hope Adams, with our address on it, a pink leash, a pink bone, and a chewy toy. This morning we talked about all of the clothes and hair bows she could order on line for her new puppy and this child is thrilled(although she made sure I knew how much she still loves that hamster). I realize all of this may sound a little crazy, but in a funny sort of way this story reminds me a little of our wait for our Ashley. The waiting will be difficult, but I know from experience that if she continues to pray, hope, and have faith that if it be inside of the Lord's will for her to have "something to love" that this puppy will be conceived and will be born. In the meantime her daddy will be making weekly trips to the pet shop so that Allison can visit the hamster.

Ash is having a pretty good day. She is not feeling great, but her feedings are going well. I am so happy that she is tolerating them. I was so scared about the possible operation that we were facing. It just didn't sound like a good idea to take such a risk with our little gherkin. God is so faithful! He continues to bless us everyday and we are so grateful for our Ashley's life. Now that she is finally eating I am starting to think that we might actually get to move out of this hospital one day. I guess what I am saying is that the progress she is making is starting to renew my faith and give me hope of making it home to Texas. I am looking forward to that day with a new excitement believing that it may actually happen.

It sounds like the crop a thon was really fun. I wish I could have been there to visit with every one. I am anxiously waiting on the pictures to be sent. Thanks Suzanne for sending them. Thank you to all of the volunteers who made today happen. I really appreciate all the time, the sacrifice, and the work you put into the event for our Ashley. I also want to say Thank you to all who attended and participated. It means so very much to us. Just knowing that you cared enough about our tiny little girl to take part in today's event humbles me. I hope you all have the opportunity to meet her someday, and I pray you will be blessed for attending. I just wanted you to know that you are so appreciated.

Good Morning from Ashley's room here in the PICU. We had a long night but are planning on having a good day. Ash would wake screaming throughout the night and we could not get her to calm down. She would be resting peacefully and then wake suddenly and begin screaming. You would think it was some kind of a nightmare, but our nurses decided she was probably having bladder spasms from her UTI. I have never had one, but I am being told that they are horrible and the burning is uncontrollable. They can't give her anything to help with the burning when she has to urinate so she just shakes and screams until it stops. We gave her tylenol to try and help with her discomfort, but it didn't touch it. This morning she has finally drifted back to sleep and I am hoping she gets in a good nap without any painful episodes. I know she is getting better because the screaming is no longer constant like it was last week.

We were given good news in rounds this morning. They will be turning off Ashley's TPN in the morning. We just increased her feeds to 40ccs and by midnight we hope to be at 45! This seems so unbelievable to me and it may not last long, but for now I want to express my thanksgiving. She is tolerating her feeds, and as far as I am concerned it is nothing short of a miracle in our lives. Her feeding issues since transplant have been so discouraging, and I know they may not be completely over but I can at least see some hope on the horizon. I am so grateful that her body is allowing the feeds to go in and stay down. I am really excited. We have no results from the biopsy. I am anxiously waiting to hear something back from somewhere. If they could just tell me that they don't expect it to be cancerous or that they don't expect it to move into her brain then I know I will begin to breathe a little easier. Just knowing that He won't give us more than we can handle brings peace to my heart, but the not knowing is proving to be difficult for me.

Last night Dave beat the pants off of Blake and Allie during monopoly. He called to let me know that his big brain was no match for the two of them and he bankrupted them both. Poor kids. You would think he would know by now that he is supposed to let Allison win. Blake would never accept a win without actually dominating the game so he would know if his dad took it easy on him, but Allie needs to win against those two guys every now and then. Anyway today is the crop a thon and Allison was so excited this morning. Her grandma picked her up and they have gone to do a little scrapbooking. I know she will have a great time. Blake has baseball practice all afternoon so you know he is thrilled. He promised to hit the ball to Omaha for me and Ashley to see so we will be waiting by the window. The weather forecast speaks of snow for us tonight. I wish the kids were here to enjoy it. I have decided to hibernate in our room all day and not come out. It is cold and I just want to snuggle this baby under our covers all day.

We are feeling blessed and excited about Ashley's feeding progress. We thank you for your faithful prayers on her behalf. I pray you have a great Saturday doing the things that bring joy to your hearts. Thanks for coming to Ashley's story today. We will check in later with everyone. God Bless. Trish

Well its Friday night and on the weekends when we are home it is tradition to have "Family Night". Guess what Dave and the kids are doing? Oh, how I wish Ash and I were there too. We love family night. Its one of those nights where you all just sit around playing board games, eating yummy snacks, watching movies, and fellowshipping. Tonight I hear that Monopoly will be the game of choice. Watch out cause when Blake plays ANYTHING he is out to win! It is so funny to watch the kids battle for Boardwalk and Park Place, to listen to them try to make deals with each other, and to give each other advice. Ash loves to sit in her bumbo chair on top of the table and hold on to the property deeds. She grunts and growls along with Blake and Allie as the games start to heat up. I love our life and I can't wait until Ash and I get to move back home.


Ash is looking really good. She really doesn't look sick tonight. I turned her oxygen off about 3 hours ago and so far she is doing well. I am still in shock that she did not return to me yesterday on the ventilator. What a blessing. She is tolerating her feeds and by midnight she will be at 35ccs and hour. I am so excited that she is not vomiting. I pray that she will continue taking her feeds so that we might avoid the surgery everyone was debating over. I just know God is doing big things in her little body. We have spent precious hours rocking in our favorite chair today and she has snuggled in next to me as I have drifted off to sleep while memorizing the details of her little face. She smells so yummy and looks so sweet. Her little lips are so pouty and pink and her eyelashes are so long. I love to just stare at her. She makes the sweetest little squeeking noises as she sleeps. I really am blessed in this life. I wouldn't trade the moments I have spent with her today for anything.

My plan for the night is to snuggle under my blanket and do a little reading. My mind will probably continually drift to thoughts of what is happening back at home and I am sure I will call a hundred times just to listen to them talk. Eventually I will fall asleep and dream of the days when Ash and I are back with them enjoying "family night" once again. For now I will continue to wait on the Lord and see what He will do in our lives.

Thanks for taking a moment to read our Ashley's story today. Thanks for praying for us all. Thanks to all of you who have worked so hard on tomorrows Crop a Thon. I really wish I could be there to do a little catching up on my scrapbooks and enjoy looking at all of yours. I look forward to seeing the pictures. Make a few pages for me while your at it. Have a great night and I pray you get to enjoy a little "family night" fun inside your homes too. Trish

I have spent the morning rocking this sweet baby girl and reflecting on the weeks events. As I realized that it was Friday I almost could not believe that it had been an entire week since her G-J surgery. I would have to admit that this has been one of the most trying weeks since arriving in Omaha. I am exhausted and really feel like sleeping for the entire upcoming week but I know that this is not possible. Ash is having a hard time resting today unless I am holding and rocking her(which I absolutely love to do). She does not want to be placed in her crib to sleep so I have had a difficult time posting any news this morning. She seems to be a little sore and a little grumpy, but I imagine I would be too after going through all that she has this past week.

As I reflect on the daily events and emotions that followed them all I can say is that God has brought us through another tough one. I don't know how I would be holding up if I didn't believe that He truly does have a plan in the works for Ashley's life. This morning the infectious disease team told me that we should have the pathology results by Tuesday of next week. Once I know for sure that we are not looking at cancerous spots in her lungs then I believe I will begin to rest easier. I wish I had the answers already, but I am sure there is some purpose to be served in the waiting. Ash looks really good today even though she doesn't seem to be feeling that good. Her screaming has stopped for the most part and I am so grateful she is getting some relief from her discomfort. She continues to advance on her feedings and I sit and stare at the numbers on the pumps in absolute amazement. What has changed over the past week? I have no idea why she is able to tolerate them now as opposed to the previous18 weeks, but I am just thankful she is being fed. We plan to advance her to 35 ccs per hour by tonight. So far there has been NO vomiting or gagging. I am so excited. Unfortunately our "spots" in her lungs have bought us a minimum 6 week extended stay here in our room at the PICU. When I think about still being here in April it really does astound me. I would have never imagined we would have 6 months logged into the ICU. Oh, well, at least I believe He is working in our lives during this time. Otherwise I am afraid it would be unbearable for me.

I will "have" to go and pick up this precious baby because she has not stopped fussing since I laid her down to type. She just wants to rock and rock, and I am happy to rock along with her. Hopefully we will both drift off to sleep at some point this afternoon. I will touch base with you all once we wake up and she allows me to lay her down for another few minutes. Thanks so much for loving our baby gherkin and for praying for her today. Take care. Trish

A couple of days ago our oldest daughter Allison went to the pet store with her teacher as a sort of class trip/reward for doing well at school. While at the pet store she found a cage full of hamsters. The following day she talked her Nan into taking her back. She came home yesterday and called her mom and told her that she "needs" a hamster for her birthday(two weeks from yesterday). I told her hamsters bite and Trish told her that hamsters stink and they are not friendly. Allie continued to tell her mom that when she reached in the cage all the hamsters ran away but one, he climbed in her hand and fell asleep because he "loved her." Oh boy!!, now I have a problem. This child has a hamster that loves her and is waiting for her Dad to come to the store and rescue him and bring him back to Allie's room where he can live out the remainder of his days. Well the past couple of nights we have told Allie all the negatives about hamster ownership, they stink, they pee and poo and you have to change the cage, they stink, they bite, they stink, they die. Her response, but he loves me. Last night Trish told Allie that Mom and Dad know hamsters die easily and we just don't want her heart to hurt if something happened to him. Her response, "but my heart hurts now without him and so if he dies it won't hurt anymore than it already does." Then Allie told her mom "I just need something to love" Trish replied with "we got you a baby sister to love" and then Allie said "yeah, but you moved her to Omaha" OK, she got us, now what do we do.

The main reason we are so resistant to getting a hamster is because of Ashley's immunosuppression. She cannot be around certain things because that increases the likely hood of disease, viruses and infections which in turn lead to rejection. We don't want to tell this to Allie as we don't want her to resent Ashley and her place in our family. So, Trish asked the transplant team what kind of animals transplant patients can have. Hamsters, birds, reptiles and cats were off the list. The only thing on the list were small indoor dogs. Uh O!!! A dog??

Now I know this child would absolutely love a dog. She would take such great care of a dog (for 4 days) and I know we would love to have a dog snuggle up next to her in her bed each night. The problem I have is that I would like a dog that does not Pee or Poo or shed. If anyone knows a dog that does not pee or poo or shed please let me know because that is the dog for me. Now realistically I know that dogs must eliminate at some point or they would explode so the next best thing would be one that already knows how to do these things outside. The problem with getting a dog is that they don't come already possessing these skills.

My dog wish list:

1. Doesn't pee or poo
2. Doesn't lick my face
3. Doesn't shed
4. Doesn't bark
5. Doesn't cost an arm and a leg
6. Doesn't bite
7. Love's Kids
8. Doesn't run off every time it goes in the front yard
9. Won't do things to make me have to explain the birds and bees to my kids
10. Under 7 or 8 pounds
11. Is smart

We had a Chihuahua once and it fit all of the critea except the main one. I could not teach it to eliminate in the right place. Big problem for me.

I am not a dog expert so I am going to ask for your help.

Can you recommend a small dog (max 10 lbs) that sheds little and is trained or is so easy to train that someone like me could actually do it ( would prefer the first option) and he/she it just needs a 9 year old girl to love? What breed and where would I get it? If you know the dog on my wish list and it needs a home that would be perfect.

DAVE

I have never known kindness in my life like I have since my Ashley's birth. Something about this tiny baby girl and the gift given to me the day that I answered the phone touched me so deeply that I was never the same. Each and every day since she arrived into my heart I have been blessed by another's gift, another's kindness, another's touch. As I think about the many ways my life and my heart have been touched my eyes begin to fill with tears. I have learned that most people are good, most people are kind, and most people are looking for another person to share with what they have been blessed with in their lives.

The one thing I will never forget about my Ashley's birth mom is the kindness I saw deep inside of her eyes. There was something about this lady that made me see in her what I wanted others to see in me. We didn't spend much time together. We didn't have long conversations. We only had a brief encounter, but I will never forget the look of what I felt was a kindness to her and a gentleness in her spirit. Maybe I am wrong, but I believe that God gave me this sense about her so that someday I might share it with my daughter. I believe in my heart that He wanted me to have something beautiful to tell my Ashley.

As the pages of my Ashley's story unfold before me I am surrounded by the kindness of others. If only I had the words to describe each and every kind act that has been shown towards my family you too would begin to see why I have been so touched. The acts of kindness have come to us in many different forms. There have been gifts. There have been donations. There have been cards and letters. There have been meals. There have been words of encouragement. There have been constant prayers offered. There have been phone calls. There have been afternoons spent in waiting rooms. There have been rides to and from school. There have been patients cared for. There have been plane tickets. There have been shoulders to cry on. There have been listening ears. There have been piggy banks emptied. There have been toys unselfishly given. There have been kisses from toddlers on the computer screen. There have been friendships offered to a mom 700 miles away from home. I am touched by your generosity to love my Ashley and to love Him by loving us.

As I hold my Ashley tonight I know I have been touched by the One who gave her life. He has touched me deep inside of my soul and I will never be the same. He has given to me such an appreciation for others, for their struggles, for their hurting hearts, and for their souls. It is because of my Ashley's life and her struggles that I have learned to truly allow myself to love others and to have the desire to be used by Him to touch their lives in some way. It doesn't take an abundance of wealth to show kindness to another. It doesn't take a special talent or skill. I have learned that it takes nothing more than my willing heart to do His will and when I am looking for ways to allow Him to be seen in me the kindness begins to spill out.

Thank you for the willingness you have shown to be kind towards us. We have been touched in such a way by each of your acts of kindness that we will never again be content to live our lives without seeking ways to be kind to those around us. We have been so touched and so blessed that we will never be the same. Thank you Jennifer for your phone call. Thank you Jill for your presence. Thank you each one who logged on, left a message, typed a comment, prayed for our baby, and reached out to touch us today. I am blessed to know you. Good night and God bless you. Trish

We have just made it up from recovery and Ashley is doing well. She is NOT on the ventilator!!!! How blessed I was when I received this news. Everyone expected her to need the support, but He had other things in mind for my sweet girl. She is on 1 liter of oxygen but she looks really good. They were not able to biopsy both of the nodules they were hoping too. They did reach one of the new one that seems to be growing at an alarming rate, but the older ones were surrounded in infection today. It would have been too dangerous to just attempt to find the nodule in the middle of the hazy area. I am thankful for the wisdom they used and I will pray that they will find all that they need with the tissue samples they were able to take. I am so thankful to have this procedure behind us and I am praying it will not need to be repeated. As they removed the needle a small portion of her right lung did collapse but the radiologist was able to work on it with a syringe rather than placing a chest tube. More blessings!

As I walked away from Ash today I took great comfort knowing she had her package of pretzels in hand and her faithful bunnies on her feet. I'm so glad she had all the "comforts of home" with her. The best part of today is that she is back in our room, back in her crib, and soon to be back in my arms. God has been good to us once again.

Tonight we will keep a close eye on her watching for collapse or difficulty breathing, but we are not anticipating problems. I think she looks beautiful and I feel good about the place we are in right now. Now we wait for answers. I have no idea what they will be or where they will lead us, but I am trusting Him and I am thankful for today. Your prayers are so precious to me and I could never thank you appropriately for all you do for us. Just know that my heart overflows with gratitude. God bless you all. Trish

Does that even make sense to any of you? This morning I am nervous. So nervous that I am sick to my stomach, a little shaky, and am feeling the beginnings of a stress headache coming on. Peace? I still feel it. I believe He is in control this morning. He is revealing Himself to me through your comments. The scriptures you have shared, the words "I'm Praying", your presence on Ashley's story they are all supporting me and bringing peace to me. She is sleeping peacefully in her crib. I have rocked her and kissed her and prayed over her all morning. She can do this. She has been through much worse.

Labs came back this morning and Ash does have a UTI(urinary tract infection). I would spend 6 days screaming too! Bless her tiny heart. 3 broken ribs and this infection would be enough to make me want to let the world know that I have had enough! I am thankful for answers so that we may begin treating her.

I believe God is bigger than this biopsy. I believe He is bigger than the ventilator. He is big enough to bring her and her mommy through today. I refuse to allow myself to think about the things that could happen. I just want to get it over with and then we will begin waiting for the results. They told us it could take up to 6 weeks! I sure hope I don't have to learn to be that patient.

I just wanted to touch base this morning before things begin to get crazy and out of control. Thank you for your prayers for our baby gherkin and for her mommy. I love you guys. Will post later to let you know how they return her to me. She is scheduled for 1:30. Take care. Trish

His thoughts and His ways are higher than mine. He doesn't have to explain Himself to me. He doesn't have to fit within my understanding or my definition of who He is. He far exceeds anything that I could label Him with. I don't pretend to understand the whys or the reasons for what is happening in my Ashley's life. I don't have to come to an understanding. The important thing is that I come to an acceptance. An acceptance that He has wisdom far beyond mine. Tonight it is enough for me to know how much He loves her. His ways are higher than mine.

As high as my expectations for my daughter are can you even imagine how high His must be? He created her with a plan in mind. Her life is no accident. Her illness is no accident. Her struggles are no accident. He wants the absolute best for my Ashley and if His best for her is not the same as mine I must back up and allow His best to come before mine. My fear is that I might somehow get in the way of what He has in store for her life. If only I could remember that His love for her is so GREAT. His ways are higher than mine.

I am struggling. I am hurting. I am making mistakes. My fit throwing, My temper tantrums, My pity parties are not going to help my daughter. It is when I allow Him to be seen in me, to work in me, to use me that His best for Ashley will be done. I must not allow my own selfish will to overshadow His perfect will. I love Ash, Al, and Blake with everything inside of me. If I truly love them as much as I believe I do then I have to humble myself before Him and allow Him to work in their lives. His ways are higher than mine.

I would be lying to you if I tried to pretend that I knew how to face tomorrow and the days ahead. I don't know what to do. My heart is broken. I am scared for this precious baby. She is so wonderful. I wish you could know her the way that we do. Her smile, her laugh, her face, her hands, her bunny wearing feet, her spirit, her strength, everything about her brings joy to her mommy and daddy's heart. She touches a part of you that makes you realize how good life is and how blessed you are to have it. His ways are higher than mine.

I could have never imagined loving her as much as I do, but His ways are higher than mine. I could have never imagined struggling along side of her as we do, but His ways are higher than mine. I could have never imagined becoming connected to all of you through her life, but His ways are higher than mine. I could have never imagined we would face days like tomorrow, but His ways are Higher than mine. I could have never imagined that thousands of people would fall in love with and pray for her the way that you all do, but I thank God that His ways are higher than mine.

Have you ever been placed in a situation where neither path looked so promising. It seems that every time I turn around I have a decision to make that is either a rock or a hard place. Today is one of those days. There are so many daily decisions that we make for our Ashley and so often we wonder if we are choosing wisely. I believe in making informed decisions. However right now I am really struggling because I don't feel very well informed. It seems every time I talk with Trish I end up asking a whole lot of questions and most of the time I don't have enough information to offer any solutions. I am stuck between that rock and that hard place almost everywhere I turn. I cannot be more proud of Trish and the character she is displaying as she is bombarded each and every day with so many decisions. I struggle with knowing that she is facing the giants all alone while life goes on for me, Blake and Allie. It is so hard to carry on here knowing that she is struggling there. I spoke to her 4 or 5 times on the phone today, but every time I had to tell her I would have to call her back later because I had patients waiting for me. Let her down by telling her I can't talk now or make patients sit around and wait on me. A rock and a hard place. Spend more time in Omaha with my girls or spend more time in Longview being responsible for maintaining life on this end. A rock and a hard place. I suppose tonight as I go to sleep I will be praying for direction. Praying that God would show me what is softer, the rock or the hard place.

DAVE

For most of the day I have been fighting the urge to cry. There are definitely some days that are harder than others and I am afraid that today has been a tough one emotionally. I really just wanted to crawl up in a corner and cry until I could cry no more. Some words, some situations, some risks just bring you to that place. I am trying to be strong, trying to hold myself together, tying to make the best decisions, but I am really just a big emotional blob pretending to be keeping it all going.

Tomorrow Ashley will go down to have a lung biopsy at 1:30. There are several places of concern. They will attempt to take tissue from 2 of the largest places. Ashley had a CT scan done on the 4th and one on the 6th. She also had another done today. The scary thing is that from the 4th to the 6th there were some definite changes in her lungs. 2 new nodules developed in those couple of days. They are very large and significant. One of them is measuring 1.9cm and is growing. This is not good. When you consider the size of Ashley and the size of her tiny lungs this is actually really bad. They showed me the films, then they showed me 1.9cm on a ruler. It is huge! The most disturbing thing about this spot is that it has grown from nothing to this size in less than 48hours. If it is left untreated and undetermined as to what it is we may have a battle to large to fight on our hands. I feel as though we have no choice other than going into her lung and trying to determine what the battle is. Is it a fungus like mold? They originally thought so but it has not responded to treatment. Is it a bacteria? If so it can rapidly make Ashley very, very sick. Is it a cancer? I pray it is not. If it is, it seems to be growing at an alarming rate. We are once again in a tough spot. The knowing but not knowing is difficult. I hate that my Ashley will be placed in such a dangerous position. To be honest with you, I HATE all that she goes through.

The bottom line is that immunosuppresion STINKS! It is because of this that my Ashley struggles so very hard. She has had almost no transplant related illness' or issues. Everything that we have been battling for the majority of the 18 weeks is because she no longer has an immune system. We are purposely killing her own immune system so that her body will not attempt to reject and kill her new organs. We are trapped in an ugly battle.

Ashley's screaming is improving. We did take a 2 hour nap this afternoon and we are both feeling a little better. She is now playing with a package of pretzels in her crib behind me. I know she thinks she can figure out how to open them and get her hands on one of those tasty little things. If she does then I will happily cheer her on and allow her to munch away. She has not had ANY food in her mouth for 18weeks. She knows what she wants and she is working hard to get into it. Amazingly she is tolerating her feedings better than ever. She is now at a rate of 25cc and hour and she is not vomiting. I am so thankful. She is also breathing very comfortably. I can't even imagine putting her on a ventilator when she is doing this well.

Among the stresses of the "possible" I am scratching, clawing, fighting this hospital to have access to reports and results on tests that have been done on MY daughter. Are they kidding me? I have lost it. This makes the second day in a row I have been placed in this position. Not allowed to have a copy of the tests results because they don't want me to find something without them sitting here in the room with me. This has to stop! I can not sit here and worry and not sleep and make myself sick all night long while they are home happily enjoying dinner with their families. Give me the results! Please pray for me. I am struggling like I have never struggled before to keep my testimony in tact. I am angry. How dare they instruct my nurses that they are not allowed to give me access to her x-rays and labs and reports. Things have to change. I have been here for 18 weeks. I have been nothing but kind, understanding, respectful and the like. Please respect me enough as a parent to not make me wait for when it is convenient for them to give me test results. I feel as though I have been put to the test today and I am not passing this one. Please forgive me. We will come to an understanding about this. I am so upset I am shaking!

All I want to do is make the best possible decisions for my Ashley in some of the worst possible situations. I need them to communicate with me a little better.

Already today has proved itself to be stressful. We are putting Ash through more and more testing searching for answers as to why she just can't stop her screaming.

Yesterday's CT scan revealed more to us than the fractured ribs. It also showed us that the nodules we had been treating since Dec. 26th that were suspected to be mold have not responded to treatment and they are actually spreading. One has already become cavitated which tells us that the body has formed a capsule around it trying to keep it from spreading any further. Instead of showing only 2 suspicious areas we now are finding 4. We are on our way to do another CT scan but this one will be of her head. They are looking to see if the infectious nodules have spread from her lungs to her brain. Unreal! This is what I said to them. They told me it is actually the first place it can spread to. They are wondering if this is causing the sudden screaming and altering her personality. OK, I was just joking last night when I though she woke up from anesthesia with a whole new attitude, but these doctors are serious.

The other concern with the nodules in the lung is that they have not identified them yet. Infectious disease came in to talk to me and said that they must rule out the possibility of them being a cancer. Unfortunately this can occur in transplanted patients. They are scheduling a lung biopsy as soon as possible to go in and get samples in order to test them. I can't tell you what I am feeling at this moment. I think I am still a little numb from the direction this has taken. There are obviously large risks associated with the lung biopsy and I would prefer not to think about any of them taking place. They have tried to prepare me that she will be on the ventilator and sedated for a few days after the biopsy. At some point I believe that I will probably break under this pressure but for now I continue to listen to her screaming and pray that He will help.

I want answers and I want relief for my sweet Ashley. She is beyond exhausted. At the conclusion of the CT scan we will go over to radiology to have the skeletal scan done to see if she has suffered from any more fractures.

I will post more later, but for now they are wheeling her out the door. I would truly be grateful for your prayers today. Trish

"Hear my cry, Oh Lord. attend to my prayer. From the end of the earth I will cry to You. When my heart is overwhelmed... Psalm 61:1-2

I don't know how long it is going to last, but I wanted to share with you that she is now resting quietly without screaming. I am so very thankful for your faithfulness to pray for my Ashley. I now it must be difficult to carry part of our burden for us and I just want you to know that you are making a difference. He is listening to the many cries that go up for her. My prayer for her is that she might rest well tonight and that He may just remove whatever is causing her discomfort. How wonderful it would be to have her wake in the morning and begin to laugh and play once again.

My heart became overwhelmed today, and I am afraid I may have vented a little too much to a few nurses and doctors. I pray they will not hold it against me and that they may forgive me if I offended them in my desperation.

Thank you for praying for my Ashley. I am going to go "listen" to the silence and be grateful for the rest she is receiving. Good night once again. Trish

Tonight we find ourselves still searching for the problem. My Ashley continues to scream uncontrollably and has now been screaming for 5 days. They can find no answers. This afternoon they gave her a very heavy mixture of narcotics to put her to sleep and to give her a break from the constant screaming. I am at a loss. What could be happening to her?

Today's CT scan did show that she has suffered 3 broken ribs. We are attributing the fractures to the CPR she received a few weeks ago. As I told one of the physicians today if I had to choose between a few broken ribs and her life I will take the broken ribs. Although we just found the fractures today it is not believed to be the cause of her current discomfort. I have convinced them to begin looking for possible lower extremity fractures as well. They have ordered a full skeletal scan to determine if she has any other broken bones. I am not sure if they will get it done tonight or in the morning but I am pushing for tonight. Other than this we are all out of ideas. No one knows where to look next.

I am exhausted. She is exhausted. My heart screams along with her. We need answers. She needs relief from the pain she is experiencing. I really don't know what else to do. She seems to get some comfort from being held so that is what I am trying to do. I apologize for not posting sooner, but I have not been able to put into words the despair I am feeling for my daughter. Her screaming is constant. It can be heard all the way down the hall. She sleeps for brief moments between but is quickly awakened by the pain. Where is it coming from? How I wish it were me and not her. I would do this for her. If only I could take her place.

I find myself begging God to give us the answer. Maybe I am wrong for this. I have no idea what is the right way and the wrong way to pray at this point. I just know that He can take this from her. He created her. He knows her inside and out.

As I visited with one of the doctors on our team tonight this is what I shared with him. I realize that Ashley's life is much more valuable to me than any one else in this hospital. This is my daughter. I more than anyone want for her to live. They walk out of our room each morning and on to the next. They each go home at night to their families. My burdens are not their burdens. This is a job. A job they do well, but it is still just a job. They do not have to carry this burden 24/7, but please think for a moment what it would be like if it were your child. How would you handle this situation? What would you do in my place? I promise you would become just as desperate for answers and solutions as I am. You would be here and never leave. If this were your baby, you would fight just as hard and just as long. Please don't judge me. I am all she has. I am her mom and there is NOTHING I will not do for her. She deserves nothing less than my best. In the end I know that there is nothing they can do for my Ashley that lies outside of His will for her. It is the Father that will determine the path that her life will take. Do not think for one minute that I am confused in this area. I believe that God led us to this hospital, to this team of surgeons, to this staff of nurses. I have nothing but respect and admiration for each one who cares for my Ashley.


As tired as I am and as difficult as the past few days have been, we are still blessed. Ashley is being fed at a rate of 20ccs per hour and she is NOT gagging or vomiting. This is a record for us. Could she actually do it this time? Only the Father knows, but tonight I am thankful she is being fed. Ashleys new organs are working beautifully. We are more than thankful for this. She has been given a chance to live and we know that this was a gift. One that only He could give to her. Ash is 18months old as of this week and we are the lucky ones who get to be her parents. She is amazing. She is beautiful. She is strong. She is silly. She is determined. She is stubborn. She is one of the best things that has ever happened to me, and I never want to fail to realize how blessed we have been. We will get her through this difficult time. He is still working in her life. Thank you for your patience with me today. I appreciate all of you who continued to pray for us even without an update. I couldn't do this without the support you are giving to me. You make me stronger. Thank you for loving my Ashley and for reading her story. God bless you. Trish

I am afraid there are no words to describe to you what today feels like. On Friday against my better judgement I handed over a happy, loving, playful baby. She returned to me screaming and has not stopped. They tell me nothing is wrong. They can find nothing, but she continues to not cry but SCREAM. My heart is broken for her. We are both exhausted and I am having trouble trying to hold it together today. Before today ends I may join her and we may both just sit and hold each other as we scream until we can scream no more. I just don't have words. I guess it is possible that she had a major change in her personality while under anesthesia and we may just have to learn to love the screaming, but I think there is more to it than that. She screams so hard and so loud she can't breathe. Perhaps she has just finally had enough of this place and she has decided to let them all know. I really don't have any words so I will go back to standing by her crib listening to her scream while I cry.

Trish just called to tell me that Ash was being taken downstairs for another CT scan. The team has no idea why she is screaming so much. I am not there, I just hear her screaming each time I am on the phone with Trish. This is not like her. Trish and I know that there is something going on causeing her great pain. Please be in prayer with us that the problem would be discovered and Ash would obtain some relief today. DAVE

This journey, this road, this path seems to be never ending. I sometimes become overwhelmed with the knowing that it will go on and on and on. In the beginning I never saw this coming. I dreamed of my Ashley. I dreamed of the path her life might take. I dreamed of things like first steps, first birthdays, and all the other firsts you watch your little ones achieve. The steps that have brought us to this transplant road are ones I never dreamed of. Once you have taken your very first step along this path you will never have the option of turning around again. You will always walk along this road. A very dangerous, very uncertain road. It will most definitely be a hard road to walk. There is no easy path once you take that first step. Unfortunately those of us who find ourselves taking steps along this path have had no other options. My Ashley was dying. She was slipping away a little more each day. We were faced with this road or death. What do you do? We prayed. We searched. We learned. We waited. We thanked the Father for the opportunity provided. We came to Omaha.

As the days grow longer and the weeks and months begin to pass by I look around and I see very few faces in the rooms that are still familiar to me. There aren't that many of us still here in the PICU. Not many of us who were transplanted around the same time. Most have gone out of the hospital, a few have made it all the way home, and a couple have been lost along the way.

Even though we were aware of the dangerous path we had embarked upon 18 weeks ago today, I can tell you that neither Dave nor I believed we would still be here struggling to figure out how to feed our sweet baby. We knew transplant was not a cure, and we knew we were grasping at our last chance for our Ashley to live. We knew the road would be long, hard, and uncertain, but it never crossed my mind that she would still after being given a new bowel not be able to eat. The direction our road has taken is a mystery to all. No one knows which way we should walk. There is not a physician in this hospital that can direct our steps. As I sit here facing another day I am confused. I feel as though we are lost on this transplant road and we do not have a map to follow. Nothing we have been told or instructed to try has brought us any closer to home. It seems as though our path will go on forever. I find myself searching once again. I look at case after case. I search through story after story. I am getting no where. I think our path has begun to take us in circles. We are doing the same things expecting different results and we are making no progress.

It is easy to get discouraged. Your feet grow tired of walking. Your mind and your body grow weary. My heart aches to take her home. Home to her daddy. Home to Blake. Home to Allie. I long for us to be a family again. What steps must I take to make this happen? What can I do to help my Ashley? I continue to look for solutions. Tonight as I flip through page after page this is what I stumbled upon:

In his heart a man(or mommy) plans his course;
but the Lord determines his(or my) steps.
Prov.16:9

The course I had determined for my Ashley was very different than the steps her life has taken. I must take a step back from what I had determined her life would be. It was never mine to determine. It must follow the path that He has laid out for her. Her life must walk along the steps that the Father has determined. Can I share with you that this is not easy. There are days when I want to stomp my feet along this path and demand that we be allowed to turn around. I want her to be made whole. I want to take this beautiful little girl home to where she will be surrounded by nothing but love. I don't want for her to have to walk such a painful path, but this is not for me to determine. He is using her life, her pain, her experience to change so many hearts. Mine most of all.

Today I am determined to allow Him to direct my steps. Allow Him to lead us along this path. Allow Him to be the light for us when the path seems to grow dark. Allow Him to carry me and my Ashley when the path becomes too dangerous for us to walk alone. My prayer is that He will determine the steps that we will take today, and that some day He will determine that our road should lead us back home.

Outside of playing ball as a young adult I wouldn't consider myself the "club" member type. I am not one for joining groups of others for socialization. I would never make it as a weight watchers member because I don't particularly care for sitting in a group of women discussing anything least of all my weight. If you were to search through my wallet looking for a membership card to anything I would bet you money you wouldn't come up with one. For most of my adult life I have been content to just be the wife and mom that I believe God made me to be. I have been able to find plenty to occupy my time as I scurry about managing the schedules of those precious people I am blessed to call my family. I'm not one for going out to lunch with the girls or spending a "girls night out" with friends. I have fabulous friends who I love dearly and I know that if I ever had a need I could pick up the phone and they would be there in a heart beat, but scheduling lunch into our busy lives just isn't high on our priority lists. I have never taken part in a parents night out or anything of the like because honestly we just want to spend our time with our kids.

Tonight I figured out that I have been initiated into a club. I didn't really see it coming. I don't remember signing up for it. As I have jumped around blog land today I figured it out. To tell the truth I feel very honored. There aren't that many of us out there, but there are enough to let me know that I am not alone. I am not the only one, but rather I am one of the lucky ones. As I log on to get the update on the children of the other "club members" I never fail to see how very blessed we are. I always find myself praying for these beautiful mommies and there precious children. Mommies and children whom I have never met and probably never will. Mommies and children who have encouraged me with their strengths and have taught me through their weaknesses. As I sit here typing and coming to this realization I am becoming more and more thankful that I have been allowed to become a member of this club. As I struggle to learn just exactly what is expected of me in order to maintain my membership I am figuring out that we all do it just a little differently. We all have days that we feel strong enough to take on the world for our kiddos, and we all have days that we find ourselves pleading for others to pray us through another day. Sometimes we are hopeful. Sometimes we are not. Sometimes we are the encouragers. Sometimes we are not. Sometimes we are ready for battle. Sometimes we are not. Sometimes we think we have figured it out. Sometimes we know we have not. No matter where we find ourselves on a day to day basis the one thing we all have in common is this: WE LOVE OUR CHILDREN. Disabilities, syndromes, transplants, cancers, monitors, "battle" scars and all. We love them just the same, and I am realizing that each one of us would gladly do all that we do a thousand times over just to be allowed to be the ones who have been chosen to be their moms. Of all the clubs in the world I could have joined I am not sure this is one I would have picked, but I know without a doubt I am honored to have my place in it.

Tonight as you lay your heads down to sleep and all is well in your homes, your children have all been tucked in and you are ready to talk to the Father would you please remember to mention these names to Him for us. We would all be grateful for your willingness to take them before His throne on our behalfs. My Ashley, Sarah's Addison, Gwen's Ivey, Jennifer's Jaymun, and Heather's Emma Grace. They are precious to His heart and they are precious to mine. It is because of these beautiful little people that we have become members of this "club" and I know that I for one would never give my seat up.

Thank you for loving us. Thank you for loving others. Thank you for loving Him. Your faithfullness to pray for a baby pickle and her family does not go unnoticed. You are loved and you are appreciated. May God bless you and your families tonight. Trish

This morning I feel as though our window of opportunity is open and I really want to try and go through it before it is closed once again. Ashley is breathing better than she has since her transplant and we are completely off of oxygen support. Her lungs are clear and she holds her sats around 98. Her respiratory status is very stable at this point and that is a statement I thought we would never make again. She has been free from infection for several weeks and she looks wonderful. Once again our struggles are with her feeds. In preparation for her CT scan yesterday(which they found no perforation!) Ashley had to consume 180ccs of contrast. It was run through her new G-J tube at a rate of 50ccs per hour. 50ccs! Our goal for full feedings is 55ccs an hour and Ash has never been able to tolerate this amount of volume without becoming nauseated and vomiting(which leads her to aspirate and then we end up back on the ventilator). Watching her consume the contrast at such a high rate made me feel a little confused and encouraged at the same time. Why can't she tolerate her feedings at this rate? This morning we have started her feedings back and we will make changes as quickly as she can handle them. Our goal by tonight is to be at 15ccs and then tomorrow we would like to be at 25 by evening. I am praying that for some unknown reason to all of us that this time it will work for her. I pray and pray that we might take this opportunity to climb through that window and get out of the hospital before she picks up anything else. Please pray for her to handle the feeds and to be able to leave soon. We had hoped to feed Ashley breast milk, but we will not be allowed to. It has been shipped and is sitting here waiting for her,but their are members of the team that feel the risk it too great for her. They are not convinced that the pastuerazation process has killed possible CMV, Norwalk, Roto, etc. virus'. Of course we are disappointed because we had hoped to feed Ashley something good, wholesome, and natural, but at the same time I feel we must use wisdom and respect their concerns. We would never want to jeopardize her new organs and risk losing the gift of life that was provided for her. They would just prefer us to feed her a sterile food source as opposed to a non sterile source. So we will continue feeding her the formula and pray that she will absorb, tolerate, and grow on it.

I shared with the team that I felt like we should jump through our window since it was opened and their response to me was this, "Lets hope your open window is on the bottom floor and not the top. We think you should just look out of it rather than jump through it." OK. So maybe they have a point but I see a glimmer of hope shining through it and I am already feeling the breeze from it. Ash is only on one other medicine outside of her transplant maintenance meds and we will be going back to CT on Wed. to determine whether or not to stop it. She is still being treated for the mold in her lungs, but they are not sure if it is still in there.

Ash still seems to be struggling with a lot of discomfort and pain, but they are thinking it is stemming from the weaning schedule. They believe it is coming from withdrawals and not from her surgery on Friday. I don't know it they are correct or not, but for now we have no evidence of any problems that could be causing her to scream. They will be working today to try and control the discomfort.

So open window or not we are proceeding cautiously and I am seeking to find it He is the One who has opened it or if I am prying it open with my own hands. I am going to go try and comfort my sweet girl as she struggles with something. Thank you for your prayers and your time spent her on her story. Take care and have a great day. Trish

Anonymous said...

Would either of you be willing to share the origin of the nickname "gherkin"? It is so sweet to see her referred to so lovingly.

Click Here for "What is a Gherkin" originally posted 9-8-2006

Each night before I go to bed I take a look at the journal to see what Trish has written. To see if there are any details I may have missed during the day. To see how my Gherkin is doing. And each time I read her journal I am reminded of how great our Father is. I am reminded of how proud I am to be Trish's husband and I am reminded of how many people pray for Trish, Ash and the rest of my family.

Tonight I want to say thanks to each of you who take the time to post a comment letting us know you are praying. I know I have said thank you many times for your being a part of Ashley's Story and for your prayers, but I want each of you to know how important you are to Trish and I. Each one of you has your own life with your own daily activities, your jobs, your families and I am sure your own struggles. To know that we can rely on so many to pray for our Gherkin is such a blessing to us. To know that in the midst of all the things you have to do in the course of a day that you take the time to pray for my wife and a little girl most of you have never met means more to me than I could possible express. I thank each one of you for each one of your prayers. It is your support that makes Ashley's Story so much bigger than I ever imagined it would be.

DAVE

II Corinthians 12:8-10

"Concerning this thing I pleaded with the Lord... that it might depart from me. And He told me, My grace is sufficient for you, My strength is made perfect in weakness ... that the power of Christ may rest upon me...for when I am weak then am I strong."


More times than I can count I have found myself pleading with the Lord that all of "this" might depart from my sweet Ashley. More times than I can count I have heard Him answer me with these words, "My grace is sufficient for you." I am learning every day that it really is. Even today as the morning started out with a dreadful word uttered after the surgeon spent way too long listening to Ashley's bowel during rounds. Perforation. Pardon me, did I hear her correctly? Perforation. "Let's get a CT scan of her bowel just to be sure." I asked, "Is there honestly a chance that the placement of the J portion of her feeding tube could have perforated her new bowel?" Her answer, "There is ALWAYS a chance."

I stood through the remaining minutes of rounds stunned by her words. ALWAYS a chance. How in the world will we ever live without fear of the "chances", the what ifs, the possibilities? In my own mind I am thinking we will face these issues for her lifetime. There will never be a normalcy achieved in my Ashley's life. Every temperature, every cold, every virus, every rash, every cough, every tummy ache, every headache, the list goes on and on and on. How will she ever be allowed to run across the fields, roll down the hills, splash in the waves, climb the jungle gyms, play in the snow? As quickly as I felt the panic welling inside of me I remember these words. Words that I read late last night. Words that brought me peace as I wished I had the answers. His grace is sufficient for my Ashley. His strength will be made perfect in her weakness. The power of Christ will rest upon her. When she is weak, then she will be made strong. Not that she might be allowed to boast, "Look at me. Look at what I have been through and survived. Look at how strong I am," but that we might all look at her as she runs, plays, rolls, splashes, jumps and then say, "His strength is now made perfect in her. He has done these things for her. His power is upon her life. He has brought her through and she is now a living testimony to the mightiness of our God!"

As I wait for the results of her CT scan tonight I am finding great peace knowing that His grace is sufficient for me. He is using my weaknesses to show His strength in my life. It is a good thing that they have not come running down the hall to wheel my Ashley into the OR. I am thinking the longer they take to talk to me about the scan the safer we are. He has a plan. He is working it in her life and in mine. Something is going on inside Ashley's body this weekend. Perhaps He is using this scan to reveal to us what we could not have known without it. Remember how He used it to show us the fluid around her heart 3 weeks ago. Maybe there is something there we need to see. Maybe there is nothing(I am praying there is nothing).

No matter the results of the test I have the most beautiful baby girl sleeping quietly in her crib behind me as I type. Each time I look over at her I know that His grace will be sufficient to get us through. We will make it home in His time. When His purpose for us here in Omaha has been fulfilled He will take us home. Home so that we may begin running, rolling, splashing, jumping, playing, and anything else her little heart desires to do. We will get there. He is just strengthening us through our weaknesses at this time in her life. All for His purpose, for His glory, for His names sake.

Just before Ashley went down for her surgery on Friday Trish had a request for our transplant team. "Please just bring her back to me like I am giving her to you" Ashley had been doing so well for 3 or 4 days straight and things were looking pretty good for her. (Aside from not being able to eat of course) She was happy and playful and generally having a great time. Now, I am sure that the transplant team would love to be able to tell every parent that all is going to be OK, but the reality of the human body is that we cannot predict the outcome of any given test, procedure or surgery. We have learned that when you transplant an organ (or 3) many of the rules and variables of how the body functions has to be thrown out the window. It is a whole different ball game so to speak. Well since Ash returned to us on Friday evening all she has done is sleep and cry. No amount of Mom's love or pharmaceuticals has been able to console her. They have once again stopped her feedings in preparation to take her back downstairs for an abdominal CT scan. They feel as though it could be possible that the graft bowel was perforated during the placement of the GJ tube on Friday. Today I pray that this is not the case, I pray that the graft is working well and I pray that the transplant team would find the problem being something more easily correctable. These are my prayers for my daughter today.

Thank you for keeping up with a little Gherkin today and again I sincerely thank you for your prayers for her and our family.

DAVE

One of the things I miss the most about being at home is the time I spend with each of the kids as I tell them goodnight. I love those moments and I would have to say it is the "high" of my day. Just listening to them talk brings me a joy inside of my heart. It is in those few moments each night that I feel like we are really connecting. As I lay next to each of them on their beds I find myself surrounded by the things that define who they are. In Blake's room everywhere I look I see his "dream". Its a big dream and we love to lay and talk about it together. "Mom, what if when I get to practice tomorrow Pudge is there and he is going to help coach our team? What if mom? It could happen you know. It really could." "Blake, when you go pro just remember who took you to practice for all those years. Remember who made sure your uniforms were ready and your equipment was loaded. Remember Blake, OK." As I lay next to Allie I find myself surrounded by the things she loves so much. Her original paintings, her beloved rock collection, her cheer leading uniforms, a vase of fresh flowers she has so beautifully arranged(she wants to be a florist when she grows up). She is just so talented and so beautiful. Our conversations can be about anything but they always end with this statement, "You know your my best friend Al." "Your mine too mommy". How I love this little girl. Sometimes our goodnights may be as brief as 5 minutes, but other nights it may last for an hour. It just depends on what they have on their hearts and how much they are willing to share. Many nights the flood gates have opened and they begin to share burdens they have carried around for days. At the conclusion of our goodnight talks we pray together and I tuck them in "like a burrito"(the phrase Al coined when she was only 2) and then I tell them how very much I love them before I turn out the lights and close their doors. Other nights it becomes an all out tickling match and we giggle until we can no longer breathe. Nothing too deep or too heavy just a great way to end the day. No matter the duration or the content of our goodnight moments I always find myself walking away from their doors with a smile on my face and thanksgiving in my heart for being allowed to know these wonderful little people.

Dave has his own goodnight moments with each of the children. I really have no idea what they talk about. Its private. Just between them and their dad. Every once in a while he may come to our room and share a little of it with me. As he walks out of their rooms he asks them one question. Its been the same for as long as I can remember. "Whats the most important thing?" They answer, "Loving God.". He taught them this when they were just babies. Blake used to answer, "Wuuving God." My goodness where does the time go? Now my Blake dreams of baseball contracts and gland slams. Tarheel championships and college scholarships. My Allie still not sure she even wants to get married because there is no way she is ever going to kiss a boy, dreams of adopting babies just like Ashley.

Tonight I asked each of them what their highs and lows for today were and this is what they said:

Allies: The high for her was going to putt putt with a friend. The low was having to eat at Red Lobster(she and I hate sea food!)

Blakes: He didn't really have a high or low for today. It was all great! Yesterday his high was knowing it was only one more day until baseball practice. His low was having to open his eyes, take a shower, and put in his contacts knowing he wouldn't get to close them again until late that night. I love this kid!

Davids: The high for him was waking up knowing he had a wife, 2 beautiful daughters, and a wonderful son. The low was the separation from the 2 of us that now live in Omaha.

Mine: The high for me was rocking this bundle of baby girl that has been given to me. The low was missing the other two that I am lucky enough to call mine.


Today Ash and I have spent the whole day sleeping. Tonight I will spend the whole night running back and forth through the halls doing her laundry. She has not yet bounced back from yesterdays events and has struggled between her naps. She is feeling especially cuddly tonight and I do love to rock her so I plan on staying awake and just enjoying the feeling of her tiny self cuddle up next to my heart. Tonight I am realizing just what a lucky girl I am. I am blessed. I am loved. I am missed. I look forward to the days when we all reside under the same roof again and I can pick back up where I left off with our goodnight moments. Thanks for checking in our baby "gherkin". Your prayers are so appreciated. Good night. Trish

I hesitate to open our blinds this morning. I know it must be beautiful outside. I know this because I can see the light trying to break into our room through the cracks. I love most mornings. I love the thought of having another day to spend with my sweet Ashley Kate. I love knowing that all of the hurt and ugliness that I felt the need to confront is now wiped away and I have a new day with a fresh start. I love knowing that He has a plan for us today in this PICU. So you may be wondering why I hesitate to open those blinds and let all that this day has in store for us come rushing in. Let me just share with you that I am tired. I am really tired today! We had a long night. Ash was up fussing almost every two hours. I would try and bring her comfort. We spent precious time rocking each other in our chair, but eventually she would just want to lay down. She would lay down and fuss until her meds came. I would sit in the chair and pray for rest to come for my little one and for peace to come over her. She would drift off to sleep and then I would try to go back to sleep as well.

Need less to say I look a mess this morning. It has now been 123 days that I woke up in this PICU and all 123 days it has been my goal to be showered, dressed, hair done, and face applied before the doctors round. This is not always an easy task since their are mornings that I must wait in line to get into the only bathroom that houses the shower. This morning I decided I just didn't care. I actually slept in the clothes I wore yesterday and I am still wearing them as I sit and type at this moment. I know its gross, but hey I told you how tired I was. I did manage to brush my teeth, use mouthwash, wash my face and run a come through my hair but that was it. I boldly approached morning rounds in all my natural "beauty". I can't imagine what they must be thinking of me, but honestly the only thing I really care about today is getting a good, long nap. Have you ever attempted to maintain yourself for this long away from home, away from your beautician, away from your bathtub and bubble baths? Have you ever attempted to shave your legs in a public shower while people are standing in line and knocking on the door to use the bathroom? I promise you it is not easy. I look a mess. My hair needs color, my eyebrows need to find a professional with enough skill to create a shape out of them, my nails are horrible, and to mention my feet would be a sin. I need a pedicure! I promise I am not a vain person, but if my friends and family could actually see how much weight I have gained since I began eating in this cafeteria three meals a day they would not recognize me. I need professional help! All of this aside the only thing I can think about doing today is this: SLEEPING.

I do have goals though. Just not any I plan on implementing today. I hope to have my hair cut and colored, nails done, and eyebrows attacked by the time I fly to meet Allie in Dallas for the competition. As for the weight and wrinkle issue, my prayer is that my friends will just overlook that part of me and realize my priorities have changed. A lot!

Ash is now sleeping and I am afraid I MUST join her. Thank you for all of your encouragement. Thank you for your kind words. Thank you for your prayers. I pray you all have a blessed day with lots of time with your families. Take care and "good night". Trish

How do I begin this post and what words do I say? I try so very hard to be kind and gracious in all that I say. I would never want to put something in this journal that would cause the Father to be disappointed in me. I would never want to put something in this journal that would cause pain to another. I would never want to put something in this journal that my Ashley could not read. I would never want to put something in this journal that would cause her to be ashamed.

Dave and I have a responsibility to live our lives in such a way that our children will see Christ in our daily walk. They must learn from us how to serve, how to be compassionate, how to be loving, how to be kind, and how to react to others who are not so kind. I try to be careful with the words and the stories that I share in Ashley's journal. I realize that it is my children who will be affected by the contents. There will come a day in their lives when they are allowed to read the pages of Ashley's story and they will see the comments that have been left in response to the experiences that Dave and I have shared with the world. My prayer is that they will be thankful, they will be blessed, and they will be proud of how we all walked this together.

I was encouraged for many, many months to begin this journal. To be completely honest with all of you I resisted. Not because I wanted to be lazy. Not because I didn't want to take the time. Not because I minded sharing her story, but because I did not want my family to be hurt. Unfortunately I am learning that not everyone shares my belief that all people deserve to be treated with KINDNESS and RESPECT. It is because of this reason that I hesitate to continue pouring out my heart in such a public forum. I find myself questioning the decision we made to share our experiences. This journal is nothing more or nothing less than the ramblings of two parents who have been blessed beyond anything they could ever deserve, but who have and are suffering with much brokenness as well. There are happy posts, there are sad posts, there are desperate posts, there are grateful posts. This journal contains the very insides of our hearts on a daily basis. To think that some would want to hatefully strike out against one of us or all of us is so very painful to me. Why? What have we ever shown but kindness toward you? I am struggling to understand. The only thing that brings me any type of peace is the knowledge that their were those who also struck out against the very one Who came to show them nothing but love and kindness. In the end He laid down His life for them.

The only reason that I consider continuing my Ashley's story is because of this: I don't believe it belongs to me. It has taken this journal and the response it has gotten to show me that her story is here to be used to tell His.

Tonight I would like to make a request from those of you who follow this journal. I am going to ask that if for some reason you feel as though you do not care for who we are as a family, the decisions we make for our children, the way we choose to live our lives or run our family buisness then would you please take a moment to pray for us. If you feel as though you need to criticize us or make a personal attack then would you please do that in person. I ask you not for my sake, but for HIS. Please, please do not try and hurt my children. Please, please do not "dirty" my daughter's life story with hurtful comments and negative words. We are open to listen. We are open to criticism if it is done with honesty and character. Please, please don't feel the need to be anonymous any longer. If you have something that you feel you need to share please do it in person so that we may make it right with you. I am hurt by what you have said in such a public forum. I ask that next time you please do it privately and I ask that if we have ever hurt you or wronged you that you please bring it to our attention so that we may ask you to forgive us.

I apologize for those of you who have had to take your time to read this post. I understand if you feel as though I am wrong for addressing this. I could not rest tonight knowing that the members of my family have been hurt by the words that have now been moderated. Please forgive me for using this page of Ashley's story to try and take care of this.

My Ashley is resting tonight. She briefly wakes just long enough to share her beautiful smile at me and to wave , "Hi, mommy". My heart is so blessed to have this child. I will never be able to give back to Him all that He has given to me. As I count my blessings tonight I would like you to know that you are a huge part of them. Your love, your concern, your kindness, your understanding(especially about this post), your generosity, and your prayers have made a difference in our lives. He has used each of you to bless our family, and we are truly thankful. May you rest well tonight. May He protect your loved ones. May you know that you are loved by our Ashley. Good night and God Bless. Trish

I am thankful for getting the opportunity to be a husband to Trish

I am thankful for getting the opportunity to be a father to 3 wonderful kids

I am thankful for the fighting spirit God blessed my youngest daughter with

I am thankful for the mother my children are blessed with

I am thankful for the job God gave me

I am thankful for the home God has provided me

I am thankful for the new friends we have gained through Ashley's Story

I am thankful for our church and church family who are so supportive of Ash and our family

I am thankful for each prayer lifted to the Father on Ashley's behalf

I am thankful for each person who offers a prayer for Ash

I am thankful for each person who takes time to check on a little pickle they have never met

I am thankful for the internet which allows us to share Ashley's Story with so many

I am thanful Al Gore took the time to invent the internet

I am thankful for the staff at UNMC who take such great care of Ash & Trish

I am thankful for airplanes which can take us to Omaha Nebraska

I am thankful for the snow God blessed us with the last time we were in Omaha

I am thankful for my family who each play such an important part of Ashley's Story

I am thankful for my mother-in-law who works so hard to help us while Trish is away

I am thankful for school which has opened their heart to my children and my family

I am thankful for the friends that God has blessed my children with

I am thankful that God shows me how to be thankful for so much in the midst of our struggles

I am thankful for a each person who has donated their time and money to help a little girl who would have never made it without the love and support of so many.

I am thankful for the opportunity to put my trust and faith in a God who takes care of all the details of Ashley's Story and my family

DAVE

I'm not crazy. I'm just a mom who may seem a little crazy when her children are hurting. I don't mean to appear that way, it just happens because I want to keep them from being hurt. That's my job. I'm just a mom.

Today has been long and difficult. We originally went down to surgery at 1:00 this afternoon and we have just now returned to our room in the PICU. I think it is 6:30. Putting Ashley down to have the breathing tube placed took a very long time. Once the tube was placed it had a very large air leak so it had to be removed and then replaced with a tube that included a cuff that could be inflated to keep it from leaking. Once the doctor began to do his work it only took another hour and 1/2. The feeding tube was successfully placed although it took a lot more maneuvering than expected because of her difficult anatomy. She did come off of the breathing tube in the recovery room but is now requiring 3 liters of oxygen.

In the recovery room is where I am afraid they began to get the idea that I was a little crazy. Ashley was given NO pain medication before, during or after the procedure. This was making me crazy! Ashley is on scheduled withdrawal medications that are given to her every 4 and 6 hours to help her wean off of the heavy narcotics she was placed on during her heart episode. They were due to be given during the periods that we were in surgery and recovery. When Ash came into recovery she had missed both doses, had been manipulated in surgery, had been placed on a ventilator, and was feeling very, very uncomfortable. The discomfort was causing her difficulty breathing. She had chest retractions and nasal flaring and was then placed on oxygen. I am getting crazier by the minute, because I can see that this is not a respiratory issue this is a pain control issue. The recovery nurses response to me was this, "You know this is not a painful surgery to have done. I don't think she really needs anything." In my mind I am trying to control my thoughts but I am thinking, "OH, REALLY? How many times has it been done to you?" So I then tell her, "Ash has a Tylenol order on her med sheet. Could we please just give her some to maybe take the edge off?" Would you like to know what she said to me? Here goes, "It would take me a really long time to figure out what the dose would be for someone this small. I just don't usually take care of little ones like this." Do you think she tried to figure it out to help my sweet baby? NO, she didn't. So I am biting my tongue so as not to lose my testimony. Then they decide to check a blood sugar. Why? I think because of the stress a procedure puts a person under. They try to draw from her two open lumen and for some reason during the surgery they have both clotted off. They agree to take it from the third. It is greater than 500. They must poke her little heel. This makes me CRAZY, because I KNOW how bad it hurts. I'm just a mom and it is my job to protect my children from pain. I know it is necessary, but I am still upset. The nurse looks at me and says, " This is no big deal, some patients have to be poked every hour every day of their lives." AND? I am sad for them, but that does not make it any less painful for my Ashley who is already in a lot of pain. I am starting to cry by this point because I just want to leave recovery and come back to our floor where the nurses know my Ashley and they love her. At least when they have to do something to her that causes her pain they care. They talk to her and try to ease her discomfort. Eventually we are finally released and allowed to come back to the PICU where they have to take more blood sugars to confirm the value. It is over 500. Why? We are not sure, but we think it is because she was under so much stress from the discomfort that they did nothing to try and control. Thankfully they have agreed to check it every 4 hours rather than every hour throughout the night. Ash is finally resting more comfortably because our nurses gave her the meds she needed and also gave her something to control her level of pain. The good thing about my experience with the recovery room is this: As if I COULD have any higher level of respect for these pediatric intensive care nurses it has gone up. I am thanking the Father for the care that these precious women give to not only my daughter but to me. They have allowed me to cry as they worked to settle my Ashley in. They listened as I explained to them how it feels to be told by a young girl who has never been a mommy that my childs pain is NO BIG DEAL. They listened to me tell them how it feels to be made to feel as though you really ARE crazy.

Ash will hopefully sleep through tonight. She has been through a lot today. I am praying that by morning she will be that smiley, happy, giggly, baby that I took down to surgery this morning. I am not crazy. I am just a mom, and when one of my children hurts it makes me crazy.

God is still good to me even though He may think I am crazy too. I often wonder if He is scratching His head and thinking perhaps He should have chosen somebody else. I am trying. I promise. I am trying to keep my emotions under control. I am trying to not act crazy. I am trying to keep my testimony in tact even though there are days like today when I feel like I am going crazy. I just keep telling myself that He chose me for a reason. I may never know what it is, but I am more than thankful that I get to be the one to be her mommy.

I'm really not crazy. I'm just her mom. Thanks for praying for her today. Still hoping this will be that last surgery and that she will now be able to eat.

Trish just called and told me that she just got a call from surgery and they told her that they just got Ash down and sedated about 10 min ago. This mean it will be closer to 5:00 by the time we know anything about how the surgery went.

DAVE

They took Ash in around 2:45. She is still in and we have not received any news. Trish is away from the computer and promises to write an update when they get back in the room and settled. Thank you for your prayers for Ash.

DAVE

Once again I sit here waiting. Ashley's life has been a continuous series of waiting. We wait for her to come home. We wait for her to grow. We wait for her to be called for transplant. We wait for her to come out of transplant. We wait for her to wake. We wait for her to eat. We wait for her to recover. We wait for her to come out of surgery time and time and time again. We wait for her to be released. We wait to leave the PICU. This morning we are waiting once again to go to surgery. Then we will wait for her to eat and then "it" (the waiting) will start all over again. I think the most important lesson for me as I have become very good at this waiting game is this:

WAIT UPON THE LORD.

I must become willing to wait upon the Lord. I wait to see what He will do. I wait to see what plan He has for me, for my family, for my Ashley. I wait as He teaches me things about myself and Himself that I never knew before. I am waiting to see what other miracles He has in store for my Ashley's life. I wait for Him to show me how He would like to use me at this time. I wait for the day that He allows us to leave Nebraska and go home to Texas. I wait for Him to reveal to me all that I would have never seen, never learned, never known outside of this experience with my daughter.

Today I can honestly say that I am thankful for the patience He is developing in me as He teaches me to wait upon Him. So now I wait for the time that they come and take her from me and I wait for her to be returned. Then we will wait to see what He is going to do in the coming days.

Thank you for waiting with me today and for joining me as I pray for my Ashley. Your patience is being grown along with mine as we wait on Him to do bigger and bigger things with Ash. I will post after we make it up from recovery. God Bless you today. Trish

This baby girl that I have been entrusted with has brought me smile after smile today. This baby girl is the most beautiful child when she smiles. This baby girl has a twinkle in her eye as she busts into a grin so large it covers her entire face. This baby girl has been so silly and so precious as we played together today. This baby girl has reached up her tiny arms to me each time I approached her crib. This baby girl awoke with a smile from each and every nap she has taken today. This baby girl is wonderful. This baby girl has called her Daddy 3 times today just to listen to his voice. This baby girl has stolen my heart as she quietly dreamed of happy things while she slept. This baby girl has blessed the deepest parts of me.

Today was not only filled with lots of play, but it also included lots of work. Ash had to work very hard with her therapist today and it was painful. This was her first time being strapped into the pediatric stander. It looks scary. It is scary. She cried from the discomfort and I wanted to cry along with her. I hated to see her struggle so much, but it is something that must be done. She reached for me the entire time and cried "Mommm" over and over again hoping that I would rescue her. I make her work hard because I love her, but it breaks my heart. If my Ashley has any chance at ever standing or walking we must make her endure the therapy and push through the pain. It is very frightening to have her place her body weight on her feet and legs. Her bones are very fragile and brittle from the extended use of TPN and strong doses of steroids that she lives on. One of our little transplant friends has actually fractured his leg and he doesn't even crawl or walk yet. We must take it very slow and it will take many, many painful days to strengthen her bones and muscles so that she might one day be able to walk. Today was difficult to watch. It was a huge dose of reality for this mommy. I saw what a very long way we have to go as we slowly recover from all that she has been through. Just 5minutes at a time for now. It may take us years to get there, but I believe if He wills it that she will get eventually get there. The amazing thing about this baby girl is that the minute she was released and I picked her up the smile came across her face and she began to pat me as though to tell me that she forgave me and all would be fine. I love this baby girl.

Tomorrow we face the G-J procedure. It is scheduled for 1:00, but they told me they may take her down as early as 11:00 or 12:00. Be prepared is what I was told. I really don't know how long to expect her to be gone. She has had it done 4 previous times and they have ranged from 45 minutes to 4 and 1/2 hours. I pray all goes well and that she is returned to me in an hour. Their is a possibility that she may return on the ventilator, but she has been breathing well on her own without oxygen for more than a week now. Hopefully they will be able to remove the breathing tube while she is in recovery.


Tonight will be a long night as I anticipate tomorrow's procedure. Maybe this will be the time that all goes well and she is able to eat. I pray that for this baby girls sake that it will work. I am going to go lay down and talk to the one who gave me this baby girl. I am going to thank Him for His goodness to me. I am going to entrust this baby girl into His care. I am going to thank Him for those He is sending to this baby girls story and thank Him that they care enough to pray for her. This baby girl loves you all and so does her mommy. Take care and Good night. Trish

This morning I listened to a speech Blake gave at school this week and I was struck by how much I felt I could relate to what the disciples must have been feeling that day. His speech was taken from the passage of scripture in Mark 4:35-41.

I feel as though we are riding in a little, rickety, ship in the middle of the ocean and a huge storm has come about. The waves are washing over the sides of the ship and it is beginning to fill with water. The wind is blowing and I am afraid the ship may turn over. I begin trying to bail the water with my hands as fast and as furiously as I can. It doesn't seem to help. The more I try to save myself from the storm the deeper the water gets and the harder the winds blow. Many times I feel I am being tossed about and the fear and panic begins to well inside of my heart. All the while Jesus is there. At peace. He is waiting. He is resting. He knows I am struggling. He knows I am trying to save my Ashley. He knows that with the sound of His voice He can command the winds to cease and the waves to be still. He waits patiently for me to look to Him. After flailing about for far to long I desperately begin to call on Him. "Where are you?". "Don't you care that I am drowning?" " How can you rest while my daughter is slipping out of my grasp?" He rises and He answers me, "Peace, be still." and as I stand amazed that even the toughest of days and the roughest of seas obey His command I realize that all I need to do is call on His name. He says to me, "Trish, why are you so fearful? How is it that you have no faith?" I become humbled as I realize I have allowed my faith to become weak. I have allowed the waves and the winds to carry me off course. I have become overwhelmed by my circumstance and I have forgotten to believe that even this "storm" that I find my family in can and will be controlled by the command of His voice. Father, please forgive me when my faith becomes weak and I fear the storm as it rages in my life. Please bring peace to the struggles that lie ahead and bring a calm to my heart as I wait for You to bring this storm to an end.

After another sleepless night(that makes 3 in a row), Ash and I are resting today as we wait for tomorrow's procedure. The past experiences with this procedure make me fearful of the storm that could rage. I am looking for peace. The peace that comes through my faith knowing that if the storm returns I can call on His name and He will be there. Willing and ready to pick us up off the shore, rescue us from the waves, dry us off with His garment, and hold us close until He brings about His plan. I believe He is working in her life and in mine. I know He continues to strengthen my faith as I wait for my Ashley to be made whole. I am listening for His voice and to hear His command, "Peace, be still." I am trying. Thank you for your prayers and for your presence. Those of you who continue to jump in this boat with me day after day and ride out the storms are forever endeared to my heart. I am blessed by you. Trish

It was a nice quite night in the Pediatric Intensive Care unit at the Nebraska Medical Center in Omaha when it all started. First just a strange sound and then before we knew what was happening it began. Ashley was being attacked by a

GIANT KILLER BUTTERFLY


it was all caught on tape so you can see for yourself.

It's truly amazing she survived.