Ashley's Story

She will leave fingerprints all over your heart

2/28/2007

Hopeless

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

Received

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.

Prayers for Davian

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

Baby sitting

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

Wanted

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.

2/27/2007

Depending on Him

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

Learning to do it all....

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

A ministry?

...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

Plans for the Day

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

"My Own Little Cabbage Patch"

Going No where

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.

2/26/2007

Making a Difference

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.

Mail Day

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

Where is She Safe?

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.

2/25/2007

Living each Moment


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.

Lazy Day

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

Always Faithful


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.

2/24/2007

Wiped Out

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

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.

2/23/2007

If you cannot see the video below try clicking here.

DAVIAN

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.

Its here

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

New Look

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!

This is my sweet Ashley's new look. I think she looks beautiful. More than likely if you ever see us around town this is exactly what she will be wearing. I haven't found them in pink yet, but you can rest assured that I am looking. So far I have found them in yellow(definitely not fit for a princess) and Mickey Mouse print. For now we have opted for the Mickey prints. She is actually not putting up too much of a fight once they are on. It may be because she just isn't feeling well, but I hope to be able to convince her that this is fashionable princess attire. All in all I think Ash is doing ok with this first week of chemotherapy. The first 3 days were really unbearable. We didn't sleep, we didn't stop fussing, we didn't stop pacing the floor, but last night she settled down a little and felt like picking up a toy or two. This morning she woke up not screaming and has sat up for a few minutes to dig things out of her "Mary Poppins carpet bag". She is struggling with nausea and has actually begun vomiting this morning. I was hoping to avoid this part, but it looks like it is on its way. She has today and tomorrow left in the first week of cycle one then she will have a break until Tuesday. On Tuesdays she receives what I believe to be the drug with the most dangerous side effects. Her kidneys have done well this first week and that is an answer to prayer.

This morning when we woke I looked up at the monitors and saw that Ash's heart rate was 207. A little frightening! Once I got a close look at her I could see her eyes had begun to sink in and look bruised. These are Ashley's classic signs of showing dehydration. I stepped out to get my nurse's attention and she was already on it( I have one of our favorite nurses today so its going to be a good one:). We are giving her a fluid bolus and working on getting that heart rate back down. Her temp is stable and I don't feel like it is anything more than a fluid issue.

As I type she is actually playing on her own in her crib. I am so thankful she didn't wake screaming and crying this morning. Maybe I will actually get a shower. What a blessing that would be for not only me and Ash but for those who have to come around us.

Thank you all so much for praying for us today. As you pray for my Ashley please, please pray for our friend Davian and his parents. They are walking through some pretty tough days this week as they tackle multiple issues that have invaded his little body. I pray you all have a wonderful day. Take care. Trish


Along the Way

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

2/22/2007

God Provides

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

Coping

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.

Good Morning

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

2/21/2007

Missing Out

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.

Fussy and Irritable

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...

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

2/20/2007

The end of Day 1

"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.

Daisies and Rainbows

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

Cycle 1

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.

2/19/2007

Hurdling

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.

In our room

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

On our Way

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

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

2/18/2007

I am not the Mom Trish is.

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

2/17/2007

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

Am I really here and not there?

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