History

Thursday, August 24, 2006 2:38 PM CDT

Although I have written out a journal for Hanna's visitation and funeral, it doesn't seem to say all that I want to say. So for those who were there we thank you for supporting us and helping us to celebrate Hanna, for those who didn't make it, we thank you as well because we know that Hanna and our family have been thought of and prayed for often.
We have always said how proud we are that GOD chose us to be Hanna's parents, with everything that we had to face we would take it over and over just to get to hug and love her. If we had known what our lives were to become the day that Rob and I met I wonder if we would have turned and run. I thank GOD everyday for being left in the dark, because without the knowledge of our future we may have missed out on not only 6 1/2 years with an angel, but all the true, unconditional love that we have for each other and our children. We wouldn't know the darkness that love can bring you through, and the joyous light of that same love.
Through all our tears, sorrow, and heartbreak there is one thing that keeps us going. It is the knowledge that no matter how sad, or heartbroken we are, no matter how much we miss Hanna's laughter, hugs and smiles. She is in perfect body, in a perfect Heaven. Hanna will never face another surgery or scan, she will never take another drop of medicine or a shot, she will never 'not ' be allowed to do what she wants to do. And although we wonder what her life would have been, we know what her life was and she deserves so much more than what it gave her.
In Dave Stone's message at Hanna's funeral he spoke of how we come to this day full of questions, 'How did this happen ?', 'It should not have happened to a child ', yet we could also ask, ' How did this child touch so many lives?', ' How did this child face all she faced with more courage than an adult could have shown', ' How could a 6 1/2 year old child have so much love and compassion that she would collect and donate toys to other children even in her time of illness?'. These are the things we hold onto. Rob and I always knew that it was our love for Hanna and her strength that carried us through everyday of her fight, now we are left with that same love and her strong spirit to get us through each day. One of the things that we have come to realize is that even though our tears will continue through the years Hanna would never want or expect us to drown in our grief. I remember asking her one day why she never cried, her answer was pure and simple. She said ' why, it doesn't change anything ', how true are those words. We could cry until we were useless to anyone, but she would still be gone, or we can take her spirit and do the best that we can for those that we love and those who love us.
After Hanna's death, when we met with Dave Stone he asked us to describe Hanna for him. At the time I couldn't even remember my own name so that question was hard. But later, actually after her funeral, I remembered these words - Beauty, Courage, Inspiration - they happened to be words that hung on Hanna's wall that I had gotten for free at the wallpaper store months before she relapsed. Dave Stone had noticed the words in Hanna's bedroom and playroom and spoke of them at her funeral. Now I think if I had to describe Hanna those would be the words I would use - Beauty, Courage, Inspiration -. They are written on her headstone.
This journal was started to help us relay information to friends and family, we had hoped that we would close with a happy ending, print it and have it for Hanna so that she could learn to understand all that she had gone through and all the love and support she had recieved. Now, with this last journal entry I hope to show Sarah, and any other children that we are blessed with how amazing and courageous Hanna was, and how loving and caring others can be. It was always meant to be a positive statement of Hanna, and I hope that this entry has helped to make it just that.
We thank each of you for sharing our journey with us, our family continues to be uplifted by your prayers, friendships and emails. Hanna will always be our mischevious, caring, loving, beautiful, adventurous butterfly. She will never leave our hearts and the day that we enter Heaven and can wrap our arms around her once again will be a joyous day indeed. And all the questions that we have here will not matter. Rob says that ' although our grief will go on a lifetime, when we get to Hanna it will seem to her as if we were only gone an instant.' Believing that and that our daughter no longer suffers makes our sadness and pain more bearable.

GOD Bless our Butterfly
Give Her the Strength to Fly
Never Let Her Wings Touch the Ground

GOD BLESS YOU ALL,
Rob, Jen, Angel Hanna, and Sarah

Wednesday, August 16, 2006 2:17 PM CDT

It has been a while since I wrote in this journal, but Jenn and I wanted to make sure that everyone knew about something we did today and this has always been the best way to send news out. Today is two months since Hanna's passing and we still struggle to get through each day, I don't see that changing anytime soon. One thing we decided a few weeks ago is something that is really very simple, but it seems to slip away from most people in today's world. It goes like this - "While we are here waiting to go on on our way to someplace better (the place where Hanna is right now) we need to try to enjoy each other and help others to enjoy things too". Our effort to keep with this decision today involved all of the money that was raised through pancake breakfasts, poker tournaments, kind letters and our love for Hanna. Today we mailed a letter to the DREAM FACTORY OF LOUISVULLE with a check enclosed in the amount of $8000.00. We thought long and hard about where the money would be best spent. Giving it to a hospital or a research program would have helped with the fight, but this money was always meant to go toward what Hanna wanted. Trust me, if Hanna was here and we asked her where to send the money given those options, it would have been an instant "make another kids dream come true" - give it to the DREAM FACTORY. We have plans to raise a lot more money to help the fight, but we feel great about giving another family or two the chance to have memories that will always make them smile, we could not make it through the day without our memories of a magical week we spent in Disney World last November thanks to the DREAM FACTORY.

Love,
The Evans Family

Monday, August 14, 2006 12:05 AM CDT

Today has been another hard day, they just keep coming. We spent the weekend camping and boating with our friends and had a great time, I swear I could ' feel ' Hanna's smile everywhere. But eventually we always have to come home and go to sleep with an empty room across the hall from us. Staying busy seems to be our only sanity, but for Sarah and I it's a hard thing to do during the days that Rob is gone to work. I wonder what I will do when Sarah starts preschool next month, alone for 3 hours, I am not looking forward to that. I questioned sending her but it didn't seem fair to hold her back anymore, she had to miss out on so much while Hanna was sick. I keep thinking that Hanna got all of our attention for 22 months and 3 days now it's Sarah's turn, but it doesn't really help. Because I have 2 daughters, I know how to raise 2 daughters, I feel like a whole piece of my life has been stripped away. The kids started first grade and we didn't get to go to parents night or worry over who Hanna would get for a teacher, I didn't get to sign up for the PTA, or to be a room helper, or shop for school clothes and supplies. All the things that most parents gripe about I would have given my last breathe to be able to do. Instead I went and laid flowers on my daughters grave and cried, I miss her so completely.

Rob and I have come up with a few ways to raise money and help fight childhood cancer, we just can't seem to move past our grief enough to start any of them. I am sure that one day we will, but for now we take it day by day, minute by minute and hold onto the family that we have left.

Thank you to our flower lady ( Mrs. Kay ), it is so nice to open our front door and have your 'surprise' flowers there. And because today has been such a hard day, it was nice to finally meet you and recieve flowers.

Thank you for your continued love, prayers and friendships,
Jen, Rob, Angel Hanna and Sarah

Sunday, August 6, 2006 3:28 PM CDT

I was looking back through Hanna's journal earlier because I was thinking that this was the week last year when she got to go without her lines for a whole week, and it was. I remember we went to a pool EVERY single day, she loved to swim. We had taken her and Sarah to Six Flags and today had actually been the 2005 Princess Tea Party, she was so excited about that day. And she looked like such a princess, I remmeber her waking up and smiling at me with this huge smile because she was so excited. They are good memories, although they still hurt because I'll never get to wake up and see that smile from her again. She was so beautiful when she smiled, her whole face lit up.

Sarah got to go see Barbie Fairytopia yesterday with her best friend Ella and her mom Emily and I. It was good to have a special time with Sarah, although all special times have a tinge of sadness attached. Hanna was suppose to go with us, I had found out about the show before she got sick again but couldn't order the tickets until after she had passed away. At the end of the show Barbie earns her own wings for being so brave ( sound familiar ), when they brought out her wings they were these huge, glittery, pink and silver wings. Sarah's eyes lit up and she said " I think Hanna's wings are like that ", it took everything I had not to fall apart right in the middle of the theatre. But it's good to know that Sarah thinks of it that way, she has asked many questions and we try and answer as best we can. But she is 3 and her grief is much different than ours, but we are all trying to figure out how to make it through each day.

Thank you for still checking on us, and your continued love and prayers.
Rob, Jen, Angel Hanna and Sarah

Friday, July 28, 2006 10:42 AM CDT

I am still trying to write out the last journal, it is alot harder than I ever thought it would be. We miss Hanna so much, everyday is a struggle to get up and dressed and eat and do something. Our whole world has been transformed and trying to find our way through the grief is not only exhausting but humbling. How do you loose someone you love so very much and still go on ? Rob says it's Sarah and I that help him continue, for me it's he and Sarah and knowing that everyday brings me closer to seeing Hanna again. I have started to remember some good times, which I couldn't in the beginning. Yesterday reminded me of one, thank you Melinda.

When we moved to Simpsonville Hanna and I went to the preschool to check it out. We went into the first class and the kids were picking up and didn't really notice us, we talked to the teacher who was nice and went to check out the other 4 year old class. We walked into the classroom and the kids were up dancing and singing ( definately Hanna's type of crowd ), the teacher, Mrs. Melinda invited her to join and shyly she did. When we left the school Hanna was all smiles and said that she wanted to be in the class that danced, which is just the class that she got. She loved every minute of preschool that she got to attend, she would come home full of stories of her new friends and Mrs. Melinda and what they did that day. So even though it was only 3 days a week for a few hours and she was diagnosed before the school ever started. She so loved the days that she got to go and just be a kid.

Thank you for still checking on us and all your love, support and prayers.
Rob, Jen, Angel Hanna and Sarah

Tuesday, July 18, 2006 8:11 AM CDT

I am in the process of writing out Hanna's last journal entry. It is a hard process but it is helping us to remember how much Hanna trully deserves Heaven. I miss her every second of every day and where the days with her use to fly by, these days seem to take forever. Rob has returned to work and Sarah and I have been trying to stay as busy as possible. Which sometimes works but not always, our friends have been amazing at helping us through the tears and heartbreak.

A memory of Hanna : This past Easter we made organic sugar cookies, with organic icing and on each cookie we placed an edible flower. Hanna thought I was crazy to put flowers on cookies ( so did all her friends ), but I talked them into eating 'just one', the look on Hanna's face waiting to take that first bite was classic. She looked up at me with those beautiful blue eyes, gave me a little smirk of a smile and said 'here I go ', and proceeded to spit the first bite out. The edible flowers on the cookies were not the hit I thought they would be, obviously. But Hanna just smiled and said ' nice try mom'. I have a wonderful picture of her holding the cookie and waiting to take that first bite, it makes me smile every time.

Thank you for your love and support and continued prayers,
Rob, Jen, Angel Hanna and Sarah

Sunday, July 9, 2006 5:30 PM CDT

HI, I really thought that I would be able to sit and write about Hanna's funeral, but I just can't. Every time I think about it I cry, and not just a little cry the big sobbing ugly cry. So I think I am going to have to wait alittle while longer. Rob and I are at different places in our grief, he is glad that she is in no more pain and that she isn't laying in bed the way she was. And while I am glad for all of that as well, I miss my baby girl. I miss her smell, her smile, her laughter, her spunk, everything about her I miss. I don't struggle with the 'what if's ' as much as I struggle with the ' why her's', why did my baby get cancer and die. I want to scream at GOD and ask that, but I know that I have to wait for an answer and trust that there was a reason. Sometimes I think maybe the reason was because the cancer wasn't going to ever go away and instead of her fighting for years and years he called her to him to heal her the way she needed to be healed, but that still leaves the question of why did she ever have to get cancer. I know every parent who has to deal with this disease asks that question, and to my knowledge none of us has an answer.

So I have a request, if only to help a mother's heart, please let me know how Hanna has affected your life. You can either send it to this site or our email address. I desperately need to know that my child died for a reason and although the reasons will never seem like enough for GOD to have taken her, it might help to know that she touched so many. I know many of you are still checking on us just not leaving a message, because Hanna's site has hit over 100,000 - how amazing. But I would appreciate your stories.

Thank you as always for continuing to pray for our family.
Rob, Jen, Angel Hanna and Sarah

Sunday, July 2, 2006 10:55 PM CDT

We have arrived back home, it was so very hard to walk into the house knowing that Hanna is everywhere yet no where. We went to the cemetary as soon as we dropped off our bags to take Hanna a few flower leis that we had brought home for her. We sat and talked to her for awhile and even though I didn't want to stand up and leave, I knew that I had been talking to her throughout our whole trip and will continue to do so. And it was great to be back in the arms of our neighbors and dear friends ( plus one - welcome to the world Baby Tate ).

I will update about Hanna's visitation and funeral later this week. I have been asked if I would keep up her journal now that she is gone and truthfully I am not sure. In the beginning this was a way of keeping everyone up to date about what was going on since things changed so very often, but it became a way for Rob and I to express our thanks and feelings. A part of me wants to disappear into the world of normal families, yet another part knows that Hanna has made us more than a normal family. Her spirit, love and smile push me on everyday, and there is always something that reminds me of her or shows me that she is with us. So I guess I will do what she pushes me to do, and I have no doubt that she will continue to show her love for us everyday.

I wish I knew a better way to say thank you but I trully don't, Thank you for taking our daughter into your hearts and holding her there. We still wonder why her, and we miss her more than words could ever express. But the only regret that we have is that all the treatments didn't work, we don't regret the way we handled each situation that arose ( we know we tried the best that we could), and we KNOW that she knew she was loved, and in the end what more can you ask for.

Love,
Jen, Rob, Angel Hanna and Sarah

Wednesday, June 21, 2006 4:18 PM CDT

*** update wednesday, June 28,2006 ****

Our trip is going well, Rob has taken us all the way to Maui. We have snorkled with Sarah, taken her to the top of a volcano, a Luau, and we are going out to see dolphins tomorrow. We have watched the sun set every night and I swear it looks as if the heavens go on forever, Hanna has plenty of room to run and play. We see Hanna next to Sarah in everything she does, sometimes we even catch her talking to herself but it's like she is having a conversation with Hanna. Rob and I have thought daily about coming home, but then we look at Sarah and realize that if we were home we would not be giving her the attention that she is getting now. I know that I would be balled up on Hanna's bed crying during some point of everyday. Here we shed our tears everyday, and try and help each other through the pain, we talk to Hanna at every sun set ( and through out the day ), and know that even though our pain is so intense hers is not. And although I ache to touch and kiss her, I know that if I could do that she would still be laying in bed suffering and that I do not want. So we try and think that each day is bringing us closer to seeing her again, and that helps alittle.

Thank you for all your continued love, support and prayers. We know that this pain will never go away, we just breathe in and breathe out, put one foot in front of the other and take one day at a time. That's all we can do.

Love,
Rob, Jen, Angel Hanna and Sarah

Rob and I want to thank everyone for your love and support over the past few days ( and years ). Hanna's passing, although expected has been completely devastating to our family. We miss her smile, laughter and voice more than we could have ever imagined. Yet even with the hole left in our hearts, I would not wish her back with all the pain that she was suffering. I wish her back before cancer ever entered our lives, but then I think how amazing are the things that she is seeing and doing right now.

Rob and I are taking Sarah and going away for a while, we need to make her understand that she is THE most important thing in our lives. Hanna made sure she protected Sarah in her last moments, now it's time for us to take up her lead. Over the past two years we have always had to push Sarah to the side whenever Hanna needed us, and we know that this has affected her relationship with us. Not that Hanna will ever be away from our hearts and minds, but she is in GOD's care now and we have to trust him with our angel and try and move forward.

I will update about the visitation and the service when we return and have the strength to type it out. But for now please know that we so deeply appreciate everyone who came to the services or sent flowers and cards. We have been amazed at the love for our little girl. Please continue to keep our family in your prayers as we have a very hard road ahead of us without the laughter of our baby.

Love,
Rob, Jen, Angel Hanna and Sarah

Saturday, June 17, 2006 1:04 AM CDT

**Please read visitation and funeral information below Jenn's entry**

It is with incredible saddness that I must tell you that Hanna passed away last night at 8:21pm. She did not suffer, she went peacefully with Rob and I on either side of her holding her hands and kissing her face. In truth it was quite amazing.

Sarah was going to Toys 'R Us with my aunt Kathy, she came in and kissed Hanna goodbye and said' I love you sissy '. from the time Sarah walked out the door Hanna started to breathe differently, we knew this was it. She had been waiting for her sister to leave, always looking out for her. And when Hanna took her last breathe a ray of sunlight came through our bedroom window and landed on her face, it moved across Rob's shoulders and some flowers we had in the room and then it disappeared. It was probably there for all of 10 seconds, but that's all it took for an angel to come down and take Hanna's hand, then take her home. I am forever grateful that we got to see that, I have no doubts as to where Hanna is tonight. And although the coming days, weeks, months and years will always be painful I will hold close to my heart that the second Hanna entered Heaven she smiled back at us.

Love,
Rob, Jen, Angel Hanna and Sarah

Visitation:
4-7 p.m. on Tuesday, June 20th
Pearson-Ratterman Funeral Home
12900 Shelbyville Road
Middletown, KY 40243
(502) 244-3305

Funeral Service:
10 a.m. on Wednesday, June 21st
Southeast Christian Church
Blankenbaker Dr., Louisville, KY

Hotel Information: (ask as Evans)
Ramada
251 Breighton Circle
Shelbyville, KY 40065
(502) 633-9933

Days Inn
KY 55 South
Shelbyville, KY 40065
(502) 633-4005

**We please ask that instead of flowers any donations be sent to Kosair Charities or Curesearch (look on the web)**

Friday, June 16, 2006 8:34 AM CDT

I know that everyone is checking for a new journal entry, but yesterday was just to hard emotionally on us to do it. Today isn't any better, but it does help to write in her journal. Hanna has taken another turn for the worse in the last 24 hours, she is completely depending on the oxygen now . Last night at midnight we realized that we didn't have enough to make it through until the company openend in the morning, we called to leave a message and they had an on call person that delivered the big oxygen machine, and 4 more tanks at 4am. We were so thankful that they did this because without it she starts to suffocate. Yesterday at one point after having her off of the oxygen to take her to the bathroom we called mom and Sarah in because we thought that she was leaving us, her breathing changed dramatically but we were wrong again. We put her back on the oxygen and even though her breathing wasn't good she stayed with us. I trully hope that when the time comes it will be in the middle of the night while we have somehow managed to fall asleep. Sleep being a very rare commodity these days.

She did find the energy to tell me she loved me Wed. night. I was kissing her goodnight and telling her I loved her and she turned her head and said 'I love you mommy'. I broke into tears and my heart melted, I will be forever thankful for getting to hear those words again. This is so unreal to me, every morning for like the first 5 seconds you don't realize what is going on, and then it kicks in that your daughter is laying next to you dieing, and the world falls apart again. I really don't know how much more Rob and I or Hanna can take, this is torture and we need to let her go. Hanna does not deserve the state she is in and I am having a HUGE issue with GOD for letting her suffer for so long. I know I should be praying to him and saying certain things, but I can't. It's not that I am angry ( will alittle, ok alot ) it's more that we are so very sad, our souls are shattering and I don't know how to be whole. That probably doesn't make sense to many people, but it is how I feel. Rob too I think.

Well I have gone on long enough, it's very depressing. Thank you for keeping us in your thoughts and prayers, say some extra ones from us because I just can't seem to trust him right now. I am sure one day that will be different, but for now I hurt to much.

Love,
Rob, Jen, Hanna and Sarah

Friday, June 16, 2006 8:34 AM CDT

Wednesday, June 14, 2006 11:26 AM CDT

I first want to thank each of you for your support, love and prayers. I know I say it often but it is so touching to know that so many continue to pray for Hanna and our family. Other than that I really don't know what to say, we continue to stay by Hanna's side and hold her hand and try and keep her comfortable. I miss her laughter, smiles, hugs and kisses so much. I have been told that in a situation like this you start grieving even before the loved one is gone, watching and knowing what is to come is torture. Dave Stone from Southeast came by yesterday to meet us and Hanna. It was the strangest thing, we have been waiting for our catepillars ( long story ) to turn into butterflies. The net house is hanging in our room where Hanna can see them. Well as soon as Dave walked into our house our first butterfly opened it's wings and flew to the top of the net. I am not really sure what that means but it was very cool. Dave met Hanna and talked to us for awhile, but it was Sarah who took him around the house and showed him Hanna's room, the playroom, the butterfly garden and all the pictures. She even gave him a coloring page of Jasmine ( of all the princesses). I really wanted him to meet us personally, the thought of someone standing up at her funeral and talking about her without ever knowing her, well I just didn't want that. It was kind of him to honor our request for him to see her.

We told Sarah what was happening last fri. night, I haven't really gotten a chance to talk to her about it since. But yesterday she was laying in bed with us watching cartoons and getting ready for a nap when she told me that she had told Ella that her Sissy was going to be all better and live with GOD. I called Emily later to let her know that she had said something to Ella and she told me that Sarah had told all of them, and that she had been very big and grown up about it. That broke my heart ( again), I worry about her feelings and emotions, how will she handle Hanna being gone. We let her in our room with Hanna has much as she wants, we still ask her to kiss her goodnight, and she sleeps at the foot of our bed most nights. I didn't know if that would be right but it didn't seem fair to leave her out of our grief, because she will grieve too, however 3 year olds grieve. Hanna and Sarah were ( still are ) the best of friends and sisters, for most of Hanna's illness Sarah was the only one she could play with.

Well for someone who didn't have much to say I sure said alot. I really want everyone to know how much we trully appreciate your notes, and for all the fundraising that has been going on. I think there are more things than we know of, thank you all for taking Hanna into your hearts. She is defiantely a special little girl.

Love,
Rob, Jen, Hanna and Sarah

Wednesday, June 14, 2006 11:26 AM CDT

Tuesday, June 13, 2006 8:45 AM CDT

Hanna lays beside me peacefully sleeping, we seem to be able to atleast keep her comfortable. Which is our only goal right now. She can tell if I move or get off the bed so I try not too. You would think that staying in one room, one place all day would make the days seem so long, but they seem to be flying by and that scares me. Rob and I have had alot of time to discuss what we want and need to do for her when the time comes, we know that we want her funeral ( horrible word ) to be a celebration of her life and what she has given to so many. We sat in bed with her yesterday and talked about all the good times that we remembered, we even got a reaction from her on some of them. It was good to bring up happier times, because there trully are many and it helped to laugh at how silly we can all be together.

I think Rob and I have come to grips as best we can with what is happening, cancer has taken and continues to take so much from us that it is time for the pain to stop. I can't really imagine a day without her here, but I hate imaging more days with her here like this. It's time our angel got to spread her wings, and although it will be horrifying when it does happen, she will be in a better place. Out of pain and cancer free, which is what we have wanted since the day we were told the beast existed. With us obviously, but that is not GOD's plan, and although I yell at him daily, I ask him to let her be at peace also.

Thank you for your support, love, and prayers. We need them so much.
Love, Rob, Jen, Hanna and Sarah

Tuesday, June 13, 2006 8:45 AM CDT

Monday, June 12, 2006 9:12 AM CDT

**new pictures in her album today**

Eight years ago today Jenn and I started this journey down life's path together. This path has been full of good times and bad, but no matter the situation we have always been together to see it through. I could not have dreamed of anyone better to be my wife, my best friend, and the mother of my children. I know that neither of us eight years ago even had nightmares of being in the position we are in today. We continue to care for Hanna at home, there is simply no way we will take her to the hospital. To spend the remaining time we have with her in a hospital room with nurses and doctors coming in and out telling us what we already know seems pointless. The only thing other than her comfort we worry about is her hydration, we seem to be doing alright at keeping her hydrated with water and juices. As parents, I think most people take pride in their children's accomplishments of graduating from school or winning various competitions. Jenn and I know we will not see those things with Hanna, but to be honest even if we did they would pale in comparison to the pride we have in the strength she has shown in the last two years. To see a child go through what she has experienced is something that no parent should ever have to go through, but strangely I would do it over and over again to be with her. Jenn and I share this time of heartache only with Sarah, Mimi, Poppy, and our family of neighbors. Please understand that we want everyone to picture Hanna as they remember her playing and loving life. That is how I hope to remember her in the future. For now know that she is being cared for with the most love and attention possible on this earth.

Love,
The Evans Family

Saturday, June 10, 2006 3:03 PM CDT

Hanna continues to fight, although her little body is torturing her right now. Rob and I feel like we only have days left. At this point I will give all of you the gift of your memories or images of Hanna to hold onto. I will not ruin those with the images and moments that we are facing now. Death is not kind and I hope and pray that at some point the memory of these days is replaced with the memories of better days. All I have left to give my daughter is all my heart, which she has always had, and her dignity and grace. Both of which she has shown so very often in this horrible battle.

Please continue to lift her up in prayer, she is a fighter and will not quite until she can not go another breathe.

Love,
Rob,Jen, Hanna and Sarah

Friday, June 9, 2006 9:56 AM CDT

Hanna, although alittle drugged on Morphine had a good day yesterday, of course being drugged on morphine is probably what helped. She slept until around 2pm, after the hospice nurse left and wanted to go hang out in the garden and go for a walk. So we loaded her in the stroller and Anne came by to visit then we took off to Mary Caitlyn's house to say HI. She had a nice visit with her but got hot and wanted to go home, just in time for Mimi and Sarah to get back from Hubers with lots of strawberries. Hanna hung out on the couch for awhile before heading back to bed, then of course at 8pm ( our usual wake up and go time) she perked up, ate alittle dinner ( about 4 strawberries ) and the best part, her and Sarah got in the tub together and played. Rob left the room in tears and I stayed, I had to take in every detail. It's been so long since the two of them have shared a bath and it is something that they both use to love to do, they never took baths seperately even when Hanna had her lines in they would bathe together and Sarah knew not to splash sissy's chest. That was our gift for yesterday, watching our girls hang out in the tub.

Through all of this we sometimes push Sarah to the side, Hanna needs so much from us that it's hard to find time or energy for an active 3 year old. She says to me all the time, 'please spend time with me mommy', and I try. Last night we were laying in bed and she asked if when sissy got better would I spend time with her, of course I said yes, but then she asked how was sissy going to get better if we weren't giving her the medicine, I had to tell her that only GOD could make sissy better and that we needed to pray for him to do just that. She put her little hands together and prayed ' Dear GOD please make my sissy better because I need my mommy '. Children sure can make tears come to your eyes, so while you are saying your prayers for Hanna please ask GOD to help Sarah understand.

Thank you again to all who gave blood, we ended up with 44 units and 56 people.

Love,
Rob, Jen, Hanna and Sarah

Thursday, June 8, 2006 7:29 AM CDT

Jenn and I were talking last night about so many things and she said something that I already knew, but I don't think that either of us have shared with anyone. You see, we have always made it a point to be together for everything that has happened to Hanna through her surgeries, treatments, and times in the hospitals. We were told many times by the Vanderbilt Children's Hospital staff that they had never had two parents stay with their child in the same room for so long. Neither of us are strong enough alone, but together we seem to get through the good times and the bad. The thing I want to tell everyone is that although Jenn and I have had many moments where we have cried, yelled, and asked why --- we can tell you that Hanna has never cried for her condition, she has cried for the other children she knows. Hanna has never yelled or gotten angry about any bad news about herself, she has done it several times for Brooke and Chloe. She has never asked us why this is happening to her or why they can't make it go away, she prays every night that other children's cancer can be cured. She came up with the idea to bring food and presents to the kids on 7 west on Christmas Eve, not Jenn or I. People say that we are amazing for the way that we have handled Hanna and everything that has happened to her over the last two years, I will tell you that she is the amazing one. When you are the parents of a child that handles the most difficult things with the greatest of ease, you have no choice but to live up to her example. The days are very difficult right now, but they go by so quickly. We have thought a number of times that Hanna would not wake up from a nap or that tonight would be the last night we got the chance to tell her that we loved her before bedtime, but each time we have been wrong. We don't know when or what will happen, things don't seem to be getting any better. The one thing that I know for sure is that no matter what happens, her heart will not be the thing that stops. That little heart of hers does not know how to stop, years from now if it is not beating in her body I am not worried because it will keep beating in me, Jenn, Sarah, and everyone that has ever known her.

Love,
The Evans Family

Thank you to everyone that gave the gift of life yesterday at the blood drive, especially Anne for the work you did to make it happen. We all saved lives yesterday!!

Wednesday, June 7, 2006 11:07 AM CDT

The days are filled with sadness and scattered with joy. For the most part Hanna stays in our bed asleep, or in pain. We know that the Gerson diet doesn't consist of pain medicine but that is the one thing that we will not stop giving her, well that and all our love. Rob and I stay with her constantly, we have been blessed in the fact that the company Rob went to work for has allowed him to take a short term leave of absence. We go from her being asleep and comfortable to sitting up screaming in pain and then to chatting about anything from Cheetah Girls to what Sarah is doing. Our hearts ache constantly for her to feel better, and pray that if this is not going to be cured that GOD grant her peace. This is not a situation that any parent should ever be in, I heard a poem once that says ' To have a child is to have your heart walk outside of your body', well to watch your child die is to watch your heart crumble. I still pray for a miracle, I just don't know that I believe in one. And now I trully believe our miracle is when she is Hanna, for a minute or a few hours, whatever we get from the day. That is what Rob and I look forward to the most, the times when she is fiesty, or wants to go outside, or for a walk, or color. Those are our miracles and I will cherish them always. The realization that we will wake up one day and not have her here is sinking in, and the tears flow without my knowledge. Although I wish for her better than this, I will always wish her here with us. I know I talk as if she is already gone and I am sorry, this is so very painful. Rob and I hold hands and sit next to her and pray, well more like beg, that each day she grow stronger than the day before.

Today is the Blood Drive in Hanna's honor at Simpsonville Christian Church on US 60 ( shelbyville RD) from 3-8pm, please stop by and give. There are so many families who will benefit from an hour of your time and so many children like Hanna that desperately need transfusions to help keep them alive.

Love,
Rob, Jen, Hanna and Sarah

Monday, June 5, 2006 6:16 PM CDT

Hanna has had a pretty quite day today, we all slept until 11 this morning. All but Sarah, of course, but Hanna took her morning juice with a banana and then wanted to go to Target. Sarah needed ( so she thought ) a new bathing suit so Mimi was going to take her, but when Hanna heard she wanted to go. However, she had a coughing fit that sent her back into bed before we could leave and that is where she stayed until around 5pm when she ventured outside under an umbrella to watch Sarah, Tori and Tyler on the slip-n-slide. She even let Stephanie hold her while I was inside for a minute,( Steph I know you went home and cried !!). After about a half hour out she came back in for another juice and more pain medicine, so now she is fast asleep.

We got a call from our wonderful clinic nurse, Frances, this morning asking if we wanted to go ahead and set up an appoinment for Hanna to have her CBC, xray, and another round of VP16 next week. Rob informed her that we would not be continueing on with the chemo, I think she took this as a surprise, and that we would see what next week brought. We feel like taking her down to the hospital for an xray that we do not feel as changed that much will only be more tramatic for her than need be. If we see a big enough change in her in the next week we will reconsider, but for now the changes have only gotten worse and I have no desire for them to tell me that the cancer has spread further. I like living in my make believe world where every juice is making her better, I know it is not realistic but right now that doesn't seem to matter, our reality sucks enough.

Last night Hanna started crying in her sleep, when I woke her up I asked her what she was crying about. She said that she was scared of dieing, Rob and I took a deep breathe and explained to her that there was nothing to be scared of. That GOD and Nan would love her just as much as mommy and daddy and that when she went to heaven then we would be there as soon as GOD would let us. She drifted off to sleep again and I don't know that she heard all that we said, but I think that she felt better because she didn't cry again. I am terrified on a daily basis of what the next day will bring, and I hope and pray that where ever she may end up ( here with us, or in GOD's arms ) that she get to be the happy, fun loving, beautiful little girl that I know her to be. Because she deserves so much more than what she is experiencing right now.

Love,
Rob, Jen, Hanna and Sarah

Sunday, June 4, 2006 8:40 PM CDT

*** new pictures ****

WOW !!! What a great weekend we have had, not only was the Pancake Breakfast a huge success and so amazingly touching but Hanna has done really well the past few days ( must be all those prayers ). Her days since fri. have started at around 8am and consisted of her hanging out on the couch with the family or coloring and taking all her juices without to much of a fight. We have gone for many walks ( thanks Julie for the jogger stroller), we all went fishing at the neighborhood pond, and she even had her friends over for awhile tonight. Her eyes are full of life, so much better than a week ago, and even though the pain in her right shoulder and arm still flares up we have figured out a schedule to catch it before it does. Maybe there is something to this organic foods diet, whatever it is that is giving her so much spirit I pray that it continues and only gets better.

Mimi and Poppy had come in Fri. for the weekend and Mimi has decided to stay, but Poppy went home tonight. I know this is hard on them as well, they love Hanna so very much. And living 4 hours away isn't easy, last Thurs. morning and afternoon Rob and I were so scared. Hanna was having trouble breathing and asking for oxygen alot, then she couldn't stay awake and her eyes kept rolling back into her head and she started talking about things that we didn't understand. We really thought that that was it, that her little body had had enough, I came so close to calling mom and dad and telling them they needed to get here fast. But our little girl just thought we needed another heart attack, because she perked up later in the afternoon and even had a few friends over. This is an emotional roller coaster that I would NEVER wish on anyone, at times we think we will never make it to the next day and others we know we will. Today is one of those days when we know we will. So I look forward to tomorrow knowing, hoping and praying that we get another good day.

Thank you to everyone who contributed and volunteered at the Pancake Breakfast, donations totalled over $4,ooo.oo. Stephanie M. and Stephanie W. we have been blessed with your friendships. The next event for Hanna is the upcoming blood drive on Wed. from 3-8pm at Simpsonville Christian Church, get ready to roll those sleeves up for a great cause. We tried to figure out how many times Hanna has had to have a blood/platelet transfusion in the last 21 months, we came up with around 63 times, I am sure there are more. So thank you so much for this event.

And of course the continued prayers and love,
Rob, Jen, Hanna and Sarah

Saturday, June 3, 2006 11:54 AM CDT

I trully have no words to say, the only thing that comes to mind is: My cup runneth over

Even before I pulled into the church parking lot this morning I had started to cry. SO many cars !!! Which of course meant so many people. In a million years I would have never expected the outpouring of pure love and support that surrounded me when I walked into the gym. I could only try and hold back tears. I kept thinking how amazing that my little girl could bring this many people together, and how lucky am I that I get to be her mom. I called Hanna many times while I was there just to let her know that there were so many whose hearts she has touched so deeply. Because even though she could not make it, you felt her spirit, spirit of friendship, love and hope. Thank you can never even begin to say all that is felt in our hearts. Rob and I have always been in awe over the support of so many, and whoever says that people are not genuinely kind and love their neighbor haven't been to Simpsonville. Hanna use to ask me when she was first diagnosed and so many began this journey with us, how could someone who has never met her love her? I always told her because GOD made people to love children wether they knew them or not. Today was definately proof of that love. Thank you.

Love,
Rob, Jen,Hanna and Sarah

Thursday, June 1, 2006 10:02 AM CDT

We made it to 21 days !!!!! We are so thankful for this accomplishment and hope that it means there are more good days ahead. Hanna has had a couple of rough days and nights lately, she is having more pain in her right shoulder and arm. Nothing we tried seemed to help until we gave her the morphine, so now she is on a 4 hour dose of morphine and a 6 hour dose of Ativan. I always hated morphine, it seemed to make her mean but I think this time it helps keep her spunk up. She was in bed all day yesterday until around 4pm when she decided she'd let me watch Oprah, like I cared about that but Matthew Maconnegh was on and he can sure put a smile on your face !!!! Then Rob took Sarah to swim lessons while Hanna and I lounged in a warm bath, she seemed to perk up after this and sat on the couch, took her juice and ate some raisins, one bite of grilled cheese and one bite from a slice of veggie cheese without much trouble. She really wanted sweet tea and Mimi's cheesy mac n cheese, but we had to say no and that didn't go over well with any of us. Rob and I hate telling her she can't have things that she wants to eat because it's so rare to get her to eat. But if we are going to stick with this 'diet' then we have to follow all the rules. We worry about 'what if' she went tomorrow and we didn't even let her have a glass of milk, but a good friend has been teaching me to let go of the 'what ifs', because even though we try to take control of what is going on, trully only God is in control. And in the end that one glass of milk or mac n cheese isn't going to make a difference in how she was loved.

So on to our next lesson, which has been the love and support of friends and family. Thank you all for your positive notes to Rob and I, in the deepest part of our being we only want what is best for Hanna, even if it will hurt us. Because this does hurt, it hurts terribly, every second of every day and the days seem to go by so fast that my mind has a hard time catching up. So with the hardest decision we have ever had to make, came the simplest decision. Hanna will not go back onto chemo after tonights dose. This decision was not made lightly or easily and I still wonder if it is right, when even in my heart I know that it is. Hanna's condition hasn't changed in the last 21 days, if anything it has gotten worse. Her breathing is more shallow and she continues to be in pain that we cannot seem to get rid of. This is the one thing that I never wanted for her, I never wanted her to be in pain. We are not giving up though, we will stick to the Gerson Diet and continue to pray for a miracle, we will also continue to give her pain medicine. She still has fight in her and we plan on fighting right beside her like always, but we also know that she has had almost every chemo drug there is over the last 21 months and it has never cured her.

With that said, wipe your tears away and if you live in the area get ready for Hanna blowout. There will be a Pancake Breakfast and raffle held in Hanna's Honor on Sat. June 3rd at 8 am at Simpsonville Baptist Church on US60 ( Shelbyville Rd) in Simpsonville. All money from this event will go into a fundraising account and will be donated to the charity of Hanna's choice. There is also a blood drive on Wednesday June 7th from 3-8 pm at Simpsonville Christian Church on US60 ( Shelbyville Rd ) in Simpsonville, if you need info please contact Anne Hesse at annestaz@dcr.net.

Love,
Rob, Jen, Hanna and Sarah

Tuesday, May 30, 2006 9:13 PM CDT

Hanna has been so tired today, she only got out of bed to go to the bathroom and take a bath. It's days like today that scare me, it's her eyes they seem so sad. Last night before we all went to bed her and I were cuddled up and she was having a coughing fit, I just hugged her and said that I was so sorry. She looked over at me and said 'mommy you have nothing to be sorry for', when I told her I just wished I could fix it she again astounded me by saying 'don't worry I'll be better soon'. Holding back tears I kissed her and held her until she fell asleep. How does a child know so much?

Rob and I are struggling with what to do after thurs. ( day 21), Hanna will be taken off the chemo for 7 days and it is our choice if we want to continue it. The new treatment that we have started does not include having her on any chemo. We know that the chemo will not cure her, only prolong, and the nutritional treatment may cure her. But if we have waited to long to start it then we will loose her anyway. What a decision to have to make, even though we want Hanna to stay with us as long as possible we also struggle with what her quality of life would be. How fair is it to make her be in a state where she is in constant pain, can't walk, and can hardly breathe just to keep her by our sides. She is not at this stage yet, but we know without some change she will be. We have already proven the Dr.'s wrong and kept her with us longer than they had believed possible, maybe that's our miracle.

Love,
Rob, Jen, Hanna and Sarah

Monday, May 29, 2006 5:46 PM CDT

Hanna has enjoyed this weekend very much. Sunday morning she was up and ready to go outside after her juices, she stayed out until mid-day hanging out on the patio with Mimi, Poppy, Max, Turbo and watching Sarah and the gang slide down the slip-n-slide. Then it was in for more juice and a nap, then off to the Staples for a get together ( sorry we couldn't hang around for the porch !!). She even wanted to go for a walk last night. So we thought for sure today would be a lazy day, no way !!! After having alot of trouble sleeping last night she was up at 8 because she didn't want Mimi and Poppy to leave without saying 'by' to her, as if they would. We finally sent them home for a break, not that Mimi wanted to go, but they'll be back fri.. Hanna went straight to the patio for breakfast and to hang out until around 10 when it was back in for a nap, that never happened until noon. Daddy and Sarah headed off to Lowes for a patio fan ( Hanna's request ) while she and I napped, but after lunch she wanted to go to the pool and watch Sarah swim. She hung in there for a little over an hour and then it just got to hot, so back home for more juices, oxygen and another nap. She is so wonderful, I have no idea where she gets all her spunk from but I am sure glad that she has it.

The hospice nurse did come out today to take her blood (CBC), she called and said that her platelets were good and her white count seemed to be ok, and that her hemoglobins (red blood count ) were around 7. Dr. Cheerva had said that she would want to transfuse her if she got around 6, so we aren't expecting any hospital runs soon, hurray !! The nurse did say that she could tell that her veins in her neck were swollen on the right side from her heart being constricted, and her breathing is becoming more shallow. But her blood pressure was still normal ( for her ) and her heart rate was still at 160 ( high, but to be expected ). Of course hospice annoys me, they don't seem to have a good thing to say. I was so happy to have her up and outside and then this nurse comes in and rains on our parade. We have, however spoken with a Dr. from a clinic in Hawaii that uses the 'diet' that we have put Hanna on. They want us to fax over Hanna's medical records so that they can come up with a nutritional plan suited for her. I know alternative things scare most people (including me), but the medical field has had 21 months to cure our little girl and they haven't been able to do it, so now it's time to try something else.

Please continue to keep Hanna and our family in your prayers, we know that we are probably pulling at straws, but we are so afraid of loosing her.
Love, Rob, Jen, Hanna and Sarah

Saturday, May 27, 2006 6:59 PM CDT

We seem to take one step forward and two steps back, after Hanna's busy day yesterday she has spent all of today in bed. She is extremely tired and having alot of pain in her shoulder. However, Rob and I noticed yeserday while she was taking a bath that another stitch is coming out of her incision and it's making a pretty good size whole in her shoulder blade, the area around it is very red and tender, as you can imagine. We talked about pulling it out ourselves but although we have become pretty efficient at most nursing jobs I am not ready for that one, so we will call Dr. Nagaraj on Tues. and see what he suggests. In the meantime we have neosporin w/ pain medicine and a bandaid covering it, it seems to be helping. Poor thing just can't get a break !!!

She is doing really good at drinking her juices and eating well, she did say that she didn't mind being hooked up to the IV pole because she couldn't taste anything they put in her. I explained that that wasn't a very good reason to not take her juice and she rolled her eyes at me, our fiesty girl is still in there. And she did, unwillingly, spend a few minutes outside today on the hammock. It's very hard for Rob and I not to give in to her and allow her to stay all day in bed with the windows closed or not drink the 'good' stuff, but she is so tired of fighting that we have to do it for her right now. We are not willing to walk away and let our baby die, so even though she may not want to do the things we ask her to we make her. She can get as mad at me as she wants as long as I get to keep her around.

Love,
Rob, Jen, Hanna and Sarah

Friday, May 26, 2006 5:56 PM CDT

Hanna continues to be our trooper !!! Yesterday afternoon she wanted to go over to Seth and Ella's where Sarah was, so we hopped in the stroller and hung out until it started to lighting. Then she ate 1/2 a piece of pizza for dinner while watching a movie, and at 11pm still wasn't ready for bed. Late afternoons seem to be her good times. The hospice nurse came out again yesterday and tried to retake Hanna's CBC, let's just say that Rob nor I will allow this woman back in our house again. She ended up poking Hanna twice and got more on her gloves than in the vial. So Dr. Cheerva called this afternoon to see how she was doing and discuss when to retake the CBC, just so happens we had all just returned from Walmart. Hanna decided she needed a shopping spree, so a new movie, Barbie, CD and pajamas later she felt she had enough. Dr. Cheerva couldn't believe it, she said since her blood seemed to be clotting well she would be fine over the weekend and would have 'another' nurse come out next week to redo the blood work. Then she wants us to come into clinic the first week of June ( which is our first 7 days off chemo ) and have an xray to see what, if anything has changed. We told her that we felt very confident that the tumors had stabilized and she agreed. We are still unsure what the future holds but we feel has if we have definately gained more time. The down side ( well there are many )is that she seems to be couoghing more and her shoulder is hurting more often, Dr. Cheerva explained this as the coughing from her being awake more in the last few days and moving around, and the shoulder pain as displaced pain from her diaphram being moved around. All things that unless the tumors shrink will not go away, but can only be treated symtomatically.
The up side of course is that our precious girl is still in our arms, and smiling and giving us a few laughs. Thanks Nurse Megan for stopping by the other day, Hanna's been coloring away. I am not sure if it's the new 'diet' that Hanna is on or the chemo, but she has been more alert and awake the last few days than in a week, and we are so very lucky for that.
Thank you all for your continued love and support, we all take so much strength from your words.

Love, Rob, Jen , Hanna and Sarah

Thursday, May 25, 2006 5:06 PM CDT

*** new pictures updated ***

Wednesday was hard on us, Hanna couldn't seem to stay awake and even though we tried to get her to leave our room, she wouldn't. The nurse came out to draw blood for a CBC and it ended up clotting before she got it to Kosairs. Dr. Cheerva really wants her to get the transfusion before going into the long weekend - if she needs it. But in usual Hanna style she waited until 9pm to want to go for a walk and sit out on the patio. And of course we did, it was a much nicer night than Tues. and I think she likes being out with the deck lights on, she says it's kinda magical. She even tried to color the butterfly house again, but our markers were running out of ink. So it was off to bed where she actually slept really well.

Last night at some point I think the shock that the Dr.'s had sent her home to die wore off and I got angry. Not at the Dr.'s, mostly at myself for giving up. Rob and I know that putting Hanna back in the hospital for more aggesive chemo than we are giving her at home would only hurt her emotioanlly. But I can't help feeling like there is something else we should be doing, so even though it is a shot in the dark we are trying some natural treatments. She isn't eating so we have put her on a diet of carrot, apple, and super green juices. No more sugars or salts and only organic apples, carrots, potatoes, things we can mush up and feed her. When Hanna relapsed in March we started only eating organic, but after this relapse I thin we got discouraged. We spent 7 months eating junk before anything came back and 1 month eating healthy and it reared it's ugly head. I have recieved so many emails about going back to this diet that we figure it couldn't hurt.

Thanks for not laughing at us !!! We are just trying anything we can find.
Love, Rob, Jen, Hanna and Sarah

Wednesday, May 24, 2006 9:22 AM CDT

Hanna was on the move yesterday, well figuratively not literally, she woke up and went straight to the couch to start coloring. Then it was a walk and hang out in the hammock until around 2 when she and I cuddled up on the couch and took a great nap. When she woke up it was back to coloring, you should see some of her pictures their beautiful. Then around 8 she decided that she would go for another walk and back down to the patio to place a wonderful butterfly house that had been sent to her in the garden. She ended up sitting a cushion on the ground and sidewalk painting until around 10pm when it was off to bed. We continue to be amazed by her, she even asked what we had to snack on while outside last night. She didn't eat much but the fact that she tried made us all smile. Her eating as been nonexistent for the last few days, and she has lost alot of weight because of it. She continues to drink alot, and we are supplementing everything in hopes that she gets alittle more nutrients than she would otherwise. Rob and I trully believe that the VP16 has if not shrinking atleast stabilized the tumors, because she has yet to complain of much pain ( besides her joints and head ) and she seems to be holding stable right now. Which we are so thankful for. Hospice is coming out today to check her CBC and see if she is in need of a blood transfusion, I have a feeling that she will be, but putting an IV in her will not be fun and we will probably have to sedate her alittle first. So we will cross that bridge if we have too.

I want to thank everyone who has helped to make Hanna's garden beautiful, the butterfly planters, butterfly flag and the butterfly house add so much of her. Also a big thank you to Max Grover, he is an artist in Washington State that does childrens books, and he has sent a painting to be donated to Kosairs Childrens Hospital in Hanna's Honor. And to Richard Jesse Watson, he is also a childrens book author and painter that lives in Wa. St., for his latest book. We trully appreciate everything that is being done for our family, the Relay for Life Team, blood drive and pancake breakfast mean alot to us. Thank you to everyone involved.

If love alone could heal our little girl, she would never hurt again.

Love,
Rob, Jen, Hanna and Sarah

Monday, May 22, 2006 4:32 PM CDT

Today has been another blessing, Hanna woke up and asked if after school her friends could come over and color, then go to the pottery place and home for smoothies. But even though all of those things didn't happen she did have Tori and Mary Caitlyn over for a little while to color and have smoothies. Thanks girls !! She also went for a stroller ride next store to get Sarah for lunch and sat up with me coloring for over an hour this morning. It's really the most alert she has been in days, we think it's because of giving her the Ativan every 4 hours. It seems to lessen her anxiety quite a bit. We also had a call from Dr. Cheerva this morning asking how she was doing, she made the statement that the chemo should be working by now if it's going to. Her plan is 21 days on the VP16 and 7 off for as long as we need to, we are now on day 11 of the first round, and truthfully we have had her with us longer than they said we would. So I have to believe something is working, it's very hard to not know what is going on, but days like today make me think that we may have a little longer than we thought. Although I have said it a million times before, we are trying to stay positive. Maybe I say it just to remind myself, it's so hard to watch all the kids in the neighborhood running, playing ball and riding their bikes. I want my kid to be those kids, I want Hanna to play T-Ball, and ride her bike with no training wheels, and chase after Max. But she can't, and has hard as I try to make her go outside and be apart of everything it just makes her sadder. She told me yesterday that she hated being different from everybody else, that she just wanted to tear a hole in her head because it made her so angry. I don't know what to say to her at times like that, mostly because I feel the same way, so I just hold her and tell her that mommy and daddy love her and that if we could take it all away we would. How unfair is it that mommies and daddies can only fix the small stuff, why don't we get to say " I wish it were me " and have it be so. I suppose it's because as humans we would use that phrase way to often, that's why God gets to decide. And we can only pray that whatever life brings our children that we all survive it.

Love,
Rob, Jen, Hanna and Sarah

Sunday, May 21, 2006 9:24 PM CDT

Jenn and Hanna are in bed beside me while I write this update. Overall it was a fairly good day compared to the recent days we have been experiencing. Hanna insisted on going to the Staples' house for Becky's baby shower, not so much for the party - more to be near her Mom. That did not last too long, once a few people started to show up she got anxious and she and I went home. Jenn, Mimi, and Sarah stayed and had a nice time at the baby shower, while Hanna and I went home for what turned into a short nap. After about 15 minutes of quiet time we turned on the television and I flipped through the movies until I found something I thought she might enjoy. We ended up watching the movie "Footloose" for over an hour. She asked me all kinds of questions about it and really seemed to enjoy the dancing. After that everybody came home from the shower and it was off to take more naps while Sarah and I took a walk through the neighborhood with Dan, Emily, Seth, and Ella. When we got home Hanna decided to wake up and insisted on another walk, this one not so long. We enjoyed about 45 minutes outside with her bundled up in the stroller and then in a chair, but it was good fresh air that seemed to put some color in her cheeks. After we came in for the night things went downhill, lots of coughing and a very high level of anxiety that took Jenn and I about an hour to work through. So, it is getting late and things have calmed down so we will say goodnight.

Love,
The Evans Family

Saturday, May 20, 2006 12:33 AM CDT

Jenn has been updating this site for most of the week and I finally got her out of the house with Sarah to go to Brock's birthday party across the street for a little while. She asked me to update while I was here with Hanna, so here it goes.

We had a good night last night, I actually fell asleep with Hanna in my bed at about 9 p.m. It was strange only because I had not slept in my bed for a number of weeks, but she was very comfortable with it and we slept soundly until about midnight. Jenn evidently got some peace and quiet and fell asleep in the hamock until midnight when she came in and woke me. Hanna woke up, but only for a short while and asked that Jenn cuddle up with her. I was reluctant to give up my bed again, but having mom in the middle of the night helps Hanna calm down and she is much better at cuddling than I am. She still has very few complaints of pain, her head has started to hurt in the last few days, but the medicine we have brings that under control very quickly.

The garden got done yesterday thanks to some help from the Staples family. It goes all the way around our patio and has two butterfly pots at each corner thanks to cousin Janet and some of Hanna's school friends. There are butterfly bushes, hostas, phlox, and daisies right now, but what is really special is what there will probably be in a few months. We planted 60 gladiola bulbs and then mixed about 25 bags of various flower seeds together in a bowl and let Sarah, Ella, and Seth scatter them about in the garden. It should be something to see in a couple of months. Hanna stayed in the middle of it while she rested in the hamock listening to all of us plant it together. I am sure that her presence gave the seeds and the plants the magic they need to come to life and always remind us of everything that is Hanna.

It is hard for Jenn and I to see her like this, we only get about 30 minutes to an hour each day where she is awake and willing to talk with us. Still, she is with us and both Jenn and I are enjoying what we have with her right now. We don't know what will happen tonight, tomorrow, next week, or even next month, so we soak it in as much as we can. Through all the battles we have waged with this horrible disease we have always encountered moments of tremendous joy and signs of hope, right now we get our joy from the moments we have with her and the love that everyone has shown for our amazing daughter.

Lastly, Jenn and I always appreciate everyone asking if there is anything they can do to help us, although we rarely reply with an answer other than "no thank you" I actually do have two things you can do that will help all of us:

1) Love your kids, every chance you get - no matter what!!!
2) If you have the ability, either financially or by other means, help stop this disease. No more children or their families need to experience what we and the other families we know through this disease have had to go through with their kids.

Love,
Rob, Jenn, Hanna, Sarah, Turbo, and Max

Friday, May 19, 2006 8:50 AM CDT

Well we started on the flower garden yesterday, but rain came in and we never got to finish. So while Hanna is sleeping this morning Rob is out digging in the mud, we hope that she feels like picking out the flowers when she wakes up later. She spends much of her day sleeping, and she doesn't mind the oxygen as much anymore. Her cousins sent her a CD of soft sounds to help her sleep and it seems to work really well, Thank you Jenny, John, Zach and Ben. Last night was so much better than Wed. night, she still needs her Ativan on a regular basis, and the cough medicine seems to help her gagging cough, but there were no nightmares or anxiety. The hospice nurse is coming by today to teach us how to use the 'patient care' package that was sent, it has more Ativan and Morphine in it and a few other things that were not sure about. Were on day 8 of the VP16 and truthfully we haven't noticed any improvement, but she is still getting up and drinking and talking and laughing and wanting to do things so we are trying to stay positive. Poppy went home yesterday for a few days but before he left she told him to bring the fishing poles back up and they'd go fishing at the pond. Her saying that makes me feel like she isn't done fighting yet, and I am very thankful for that.

Everday Rob gets up, kisses us both and says 'we get another day', and we thank God for each and every one of these days. Thank you for the love and support, we are not strong or special and we question why just as much as anyone else. But we love our child beyond words, just like any mother and father. And our worst fear, for her, is that she be afraid, that is something that I know I couldn't live with.

Love, Rob, Jen, Hanna and Sarah

Thursday, May 18, 2006 12:41 AM CDT

Yesterday started out slow for Hanna, she stayed in bed until around 3pm. But after she got up she made up for the late start, her and daddy went for a walk while Sarah, Mimi and I had gone to Target. But she stopped by Dollee's house to invite her over to color, and seeing her outside is all it took for the neighborhood kids to gather around. They colored, swang and played with the puppy, and even got me in dodgeball. Then it was inside to relax until Mrs. Alicia stopped by to visit. Mrs. Alicia is the Child Life Specialist at Kosair and her and Hanna have spent many hours together playing Barbies, painting and crafting. So it was no surprise that she brought Hanna a huge princess coloring poster, which she has already colored. Thank you so much Alicia, Hanna loved seeing you and wants you to come back anytime you can. After another nap we had dinner and watched Elliot get voted off of Idol. All in all a wonderful day.

The night however became something else, Hanna had a hard time getting settled and started having a headache again along with joint pain. We believe that this is from the lack of oxygen, atleast that's what we want to believe, it could also be that the cancer has spread. We gave her Ativan and Oxycodone and she slept for a few hours, then woke back up around 2am with nightmares that the monsters were eating her. How do you explain to your child that there are no monsters eating her, when there are? She was so scared and had such a hard time calming down that we gave her another Ativan and cough medicine, she cuddled up in my arms and the only thing I could think of to do was tell her a story.

So I told her of a place far beyond the clouds and past the stars and over the moon where there were no tears or pain and about a little princess who was so very tired and asked her mommy and daddy if she could go. The mommy and daddy said yes and she closed her eyes and went to this magical place where the streets were paved with gold. And the little princess realized that she didn't hurt anymore and she played soccer and swang on tree vines and had all the ice cream she wanted and there were friends and people who loved her there so that she wouldn't get lonely.

After this Hanna started to cry and said, I want to be with Brooke and Nan. We told her that when she was done fighting that they would be there to play with her. This is not obviously how I thought we would tell her that it was ok, but once again God must have given me the words.

This morning she woke up her cheerful self and wanted to know if daddy and I wanted to plant a flower bed in the back yard, she has it all planned out in her mind with stepping stones and all. So today we are busy making a flower bed and hopefully when she wakes up from her nap she'll want to go pick out the flowers for us to plant. I don't know how the future will unfold, but I do know that we are blessed everday that we get to hold her one more time.

Love, Rob, Jen, Hanna and Sarah

Tuesday, May 16, 2006 8:03 PM CDT

Days are like roller coasters around here, but we were definately on the up side today. Hanna took us for another walk around the block this morning ( with me still in jammies) and after a good nap we made it to the Build-A-Bear store, and Graeters for ice cream. She had such a great time, thank you Mary Caitlyn, Tori and Dollee for going with us. And thank you Steph M. and Steph W. for the shirt, I will cherish it always. We are all lucky to have you as friends.

Physically Hanna is doing pretty good for a kid with one lung working, she tires very easily and coughs more than we like. But we have found a way to give her her oxygen without her knowing, we wait until she falls fast asleep and sit and hold the mask about half an inch from her face, then when she starts to stir we hide it quickly. This only works with the oxygen tank because the oxygen machine makes to much noise. I also find her staring at me alot lately and I wonder if she knows more than we have told her, when I ask her if she needs anything she just shakes her head and turns away. The hospice chaplein came on fri. and told Rob that they have a book that will hopefully help us explain things when the time comes. But I believe that like everything else God will give us the words when we need them, when Hanna was 3 Rob's mom passed away of cancer and I never could find the words to explain things until the night she died. We hadn't found out yet that she had passed and for some reason the words just came to me in a way that she understood. I always believed that Nan was whispering in my ear what to say. Although I don't understand why this has to happen to our little girl, I do believe ( sometimes more than others ) that we will know what to do when we need to do it.

And I know right now that we need to shower her with love and prayers, and comfort every fear and tear. Thank you all for being here for us, every time I write in her journal I feel better. Like I have a million friends to turn too.

Love,
Ron, Jen, Hanna and Sarah

***new pictures from today****

Monday, May 15, 2006 5:05 PM CDT

Thank you all for your Mother's Day messages, I am so trully blessed to have the daughters that I have. Things here have not been the greatest in the last few days, Sat. night Hanna didn't sleep well due to nightmares and ended up being very tired and sleeping all day. She is refusing to take her breathing treatments or oxygen, mostly she is just scared of the mouth pieces. We have talked to hospice about different options of masks and today the nurse brought one out. Today has been alittle better, she has slept alot but she sat out on the couch and played for awhile and even went for a walk with us ( in the stroller ). And she has asked that 3 of her friends go with her to the Build-A-Bear store tomorrow, I pray that she trully feels up to going.

We are trying our best to enjoy our girls, so please do not be offended if we don't always stop to talk. We are so thankful for all the love and we know that everyone wants to do something for her. The only thing I can think of is to do something in her honor, maybe a community blood drive. I am having a hard time watching her die, but as Rob put it we need to be watching her live. And he is right, she is still here, laughing and talking. So I intend to spend every second enjoying her smile, laughter and plain old silliness. I have at times tried so hard to remember every detail because I never want to forget a thing, and once again my wonderful husband knows that we will NEVER forget.

Thank you for your continued love and support and please if you would like to spend time with her just call us and we will let you know if it is a good time. OUr joy comes in watching her be the 6 year old that she is, and her friends are the ones who do that for her.

Love,
Rob, Jen, Hanna and Sarah

Saturday, May 13, 2006 2:50 PM CDT

God has granted us some good days lately. Yesterday morning Hanna woke up and immediately asked if we could go to school to pick up her 'Mother's Day' present she had made. So we made a trip to school and she enjoyed seeing her friends and showing them the pictures of Max, they even asked her to come back next week and bring him with her ( secretly ), she loved that. Then she decided that she needed to go to Walmart with Mimi and Poppy, but I couldn't go. I knew that she had something up her sleeve but I never thought that she was going to attack Rob and I with silly string, 6 cans of silly string !! It was so much fun and we laughed harder than we have laughed in days, maybe weeks. The rest of the day was spent at home doing crafts, we had bought stepping stones to decorate and put her and Sarah's handprints in for Mimi and I, and they each painted a treasure box. Hanna's of course was a butterfly and Sarah's a heart. Hanna even told Dad and Poppy to go play poker because she wanted a girls night, so we had chinese and watched American Idol Extra ( we are obsessed with that show ).

Then today it was off to get baby shower decorations for our friend Becky, and a stop at Arby's for lunch. After sitting in the tub for awhile we took all the dogs, Seth, Ella and all of us for a walk, Hanna got the easy part she was in the stroller. Then over to play at Seth's house before coming home and getting a snack. Now we are chilling out watching cartoons and being silly.

All of this sounds wonderful, and it is. We continue to be amazed at Hanna's strength, not only physically but emotionally. She just wants to have fun, when we told her that her cancer was back I told her the only thing I wanted her to do was worry about being 6 and having fun and let mommy and daddy worry about the rest. She seems to have decided that that is what she should do. We all have our moments when we have to leave the room so we don't cry in front of her, and every cough makes my heart stop. But we are trying our best to put on brave faces and let her have fun. She started her VP16 yesterday, she gets 2 doses a day. Our every hope and prayer lies in that little bottle of chemo, if God is going to grant us a miracle nows the time to do it. I know he is granting us small miracles every day that we have her, she is eating so much better and is still in no pain. Rob went to pick up the chemo from Kosairs yesterday and Dr. Cheerva showed him the CT scans that were taken, their not pretty is what I was told. But when Rob told her all she was doing she was amazed, she said that looking at the pictures she would never believe that she is doing so well. We are very thankful to God for that.

We were told that if this drug was going to work it would have to work fast, meaning that this week is critical. We have a clinic appointment next thurs. and hospice is coming once a week. If there is a change in her breathing, activity level, or pain in the next week we'll know if the drug is working. Please pray that this works, we know that it is not going to cure her, but it will keep her with us longer. And we so desperately need that.

We also hope that everyone has a wonderful Mother's Day weekend.

Love, Rob, Jen, Hanna and Sarah

Thursday, May 11, 2006 5:13 PM CDT

**** New pictures posted 5/12/06 ****

Jenn and I appreciate all of the kind notes, thoughts, and prayers that everyone has been sending to us for the past few days and the past few years. Hanna has had a good day. She has had very few episodes of anxiety, not as much coughing, and she has stayed awake most of the day. She and Sarah are both in love with the new puppy - "max" - that Mimi and Poppy brought with them. He is actually a good little puppy and an absolutely wonderful distraction from the events that have unfolded in the last few days.

We spoke with Dr. Cheerva late this afternoon and we now know what we are dealing with. In the last 3 weeks, since her CT scan that was used to prepare her for radiation, she has had 3 tumors grow in her right lung and one tumor grow beside her liver. The three tumors in her right lung are large enough together that they have collapsed the tissue of the lung around them. Hanna is right now getting all of her oxygen from her left lung. The tumor beside her liver is not as large as the other three and it is growing in the area where her kidney originally was located. I know this all sounds horrible because it is, but we want everyone to know that she is not in any pain. We don't know how, but she has been moving around very normally and other than her fast breathing she has not complained at all about pain or discomfort. We are giving her breathing treatments every 4-5 hours and she has oxygen available to her at home. She even went out to a craft store with Mom and Mimi earlier to get them some mother's day gifts that she plans on crafting in the next few days. Let me tell you - this is the most amazing young woman any of us will ever meet (I know I have a large bias, but I don't care).

Now, for the future, Dr. Cheerva presented us with the options that are available and Jenn and I have made a decision that will hopefully help, but at a minimum it will allow our family to remain at home and give her as much comfort as we can hope for in the days ahead. The tumors have grown more rapidly than anyone could have thought possible and we are not sure how much time they leave us with to do any kind of treatment. Going into the hospital to use massive amounts of chemotherapy would cause Hanna to be miserable and could force all of us to spend the time we have in a place that has been wonderful to us, but is not where any of us want to be right now. We are going to treat her at home with an oral chemotherapy drug that should have very few side effects. The hope is to stabilize the growth of the tumors and possibly shrink them. We will take it day-by-day and hope for the best. Our options are limited, except for our ability to love her, try to keep her from pain, and pray that this medication may grant us some more time. Please understand that if we don't get a chance to update this site, it only means that we are with Hanna and Sarah. We love all of you and know that all of you would do whatever possible to help us, but right now we just want to be with Hanna and keep her as peaceful as possible. She is unaware of the extent of her cancer right now, she knows it has returned, but for the time being we want to keep it off of her mind. If you see her, please keep this in mind and send your messages via this web site.

Love,
The Evans Family

Wednesday, May 10, 2006 8:29 PM CDT

If we thought yesterday wasn't what we wanted to hear today was even worse. After numerous breathing treatments, blood work, oxygen, xray and a CT scan today, it has been determined that Hanna has once again relapsed in her right lung. We were told this morning that the xray showed that a gray covering was shading 95% of her right lung and that she was going down for a CT. It didn't take long after the CT for Dr. Ahuja to call and ask to talk to Rob, I knew right away what was happening. He advised us to stay in the hospital until he or Dr. Cheerva could actually look at the CT and determine how big the tumor is, but we wanted to come home. So he discharged us with orders for home health to bring oxygen and an inhibulator to the house to continue breathing treatments, also with an antibiotic for phnemonia.

Hanna is not in any pain, just tired, but she is resting now with the help of the oxygen. She hates wearing the nose thing but it helps to push the air through the 5% of lung that she can use. Obviously this is a HUGE set back to say the least. Rob and I knew that this could and probably would come back but we were not prepared for it to be this soon. We have no idea what happens from here, Dr. Cheerva mentioned a few chemo options and still talking to 'Dr. Sillyman', however Rob and I hold no illusions that this is not something that we can cure. At some point we are going to have to accept God's will, but right now that is a tremendously hard thing to do.

Please continue to pray for Hanna and our family, we are facing the worst most horrible nightmare and we are trully unprepared for what lies ahead.
Rob, Jen, Hanna and Sarah

Tuesday, May 9, 2006 8:13 PM CDT

The appointment with Dr. Cheerva at 1:30 today went different than we thought it would. It was great to see her and get her feelings about what was going on with Hanna since she had not seen her since before her last relapse. Dr. Cheerva said that Hanna's lungs sounded clear, but that her fast breathing combined with her lack of eating, low-grade fever, weight loss, cough, and general appearance was worth admitting her to Kosair Children's Hospital for a day or more. She was most concerned that Hanna might have a viral infection in her lungs that she could not get rid of on her own and that the antibiotics she had taken were not the answer. One other possibility that she mentioned was the radiation she went through over a year ago may be causing the start of a form of asthma. The last possibility was obviously that it had returned in her lungs, but she felt like the timing of things (the quick onset of cough and fever combined with school) probably did not show a high degree of likelihood for its return already. Jenn is staying with her in the hospital while I have Sarah for the night at home. Mimi and Poppy are on their way to help once again, I have no idea what we would do without them!! Jenn did mention that a breathing treatment that Hanna received later in the evening had a significant impact. We hope that this is a virus or asthma, as sad as that may sound, because I don't know that Jenn or I are ready to deal with the alternative once again. Please keep your prayers going for Hanna's safe and healthy return home in the shortest amount of time as possible.

Love,
The Evans Family

Monday, May 8, 2006 6:22 PM CDT

This weekend was a quite one for Hanna. She rested and colored on the couch, her cough does seem to be better although she still has no energy or appetiate. Today was the last day for her Zpak and we only give her the cough medicine at night, so we know that it's not the medicine that is making her tired during the day. She also continues to have a low grade fever. We are looking forward to seeing Dr. Cheerva tomorrow afternoon to find out what she thinks might be going on, still recovering from the Bronchitis or has it gone into phynemonia.

But once again radiation day 4 went very smoothly, she had Rob read a book to her the whole time, although I think she slept through it. And once again we were in and out within an hour, but this time she asked to see Dr. Sillyman before we left. Good sign that she is feeling alittle better. Right now she is asleep on the couch, help of Ativan, and hopefully will feel like eating dinner soon.

Thank you for your continued prayers and support.
Rob, Jen, Hanna and Sarah

PS. for those of you who know Brooke through us, please check out her website : www.caringbridge.org/ky/brooke
her mom has written a very touching tribute to Brooke, we are all still heartbroken that she is gone. Please keep her and her family in your prayers, I can't imagine how hard this is on them.

Friday, May 5, 2006 6:11 PM CDT

Radiation Day 3

Today went sooooo much better than the last 2 days, Hanna slept through the whole treatment. Of course she had Ativan about 45 minutes before treament so that helped her to relax alot more. Let's just say that she was seeing daddy driving next to us on the expressway and he wasn't really there !! So the treatment only the took the 20 minutes that it is suppose to take and we were headed back home, truthfully I don't know if she even remembers being there. Not that I enjoy drugging my child but it sure did help.

The downfall is that every since we got home I cannot leave the room without her having a panic attack, and she is still not eating. She literally hasn't had a bite of food all day, it is really scaring Rob and I, we hate when she stops eating. She has requested Nan's chickens and mac and cheese for dinner so hopefully she'll eat if it's something she has asked for.

Gotta go she is screaming again, please keep us in your prayers.
Love, Rob, Jen, Hanna and Sarah

Thursday, May 4, 2006 8:36 PM CDT

Radiation Day 2

Today was another test of our strength and Hanna's. This morning she woke up saying that she couldn't breathe and her throat hurt, so once again it was off to the Dr.'s to get a strep test. Which thankfully came back negative, but she does have bronchitis. So she has been put on a Zpak and cough medicine with codine to help her rest. We went from being on 1 medicine to being on 4, not the direction we were hoping for.

So after the visit to Dr. Samson it was off to radiation. She did much better than yesterday, although it still took us 3 tries to get her settled down enough to start treatment. The coughing kept getting to her and she would move every time. As soon as we were done it was time to "run" out of there without talking to anyone, she was ready to go !!

Her medicines kicked in after we got home and she spent most of the evening asleep in the hammock out back so that Sarah could play. She did have a special visitor today, Cal, a boy from her class came by and brought her a pillow case that he and his mom had sewn for her. It even has her name on it, that got a huge smile out of her, Thank you Cal for thinking of Hanna.

Please pray that these antibiotics work and that Hanna continues to do well with the radiation.

Love, Rob, Jen, Hanna and Sarah

Wednesday, May 3, 2006 6:56 PM CDT

Well the effect of being at Mimi and Poppy's for a few days seemed to help alittle. Hanna was still not feeling well and runnng a low grade fever, she also continued to cough and have panic attacks. Just not as often as she was doing. However she did find the energy to swing, paint, color and drive Grandpa Potts tractor, and she even slept longer than she has in a week. Of course the mention of home and radiation and it was back to being scared and panicky. We made it home in time to drop Turbo and Sarah off, unload the van and make bathroom runs before heading to the cancer center.

Radiation day 1 was long !! It took almost an hour to get her settled on the table the right way and after a few panic attacks and coughing spells she managed to finish the radiation. The side affects have been almost nothing, she has yet to get sick. Which was the first thing she did after leaving the building last time she was radiated. And besides just being tired we haven't noticed anything different from the last few days, hopefully this continues. Dr. Silverman did say that he had talked to Dr. Ahuja and knew that she had a viral infection and had been put on Ativan. He also suggested having something at the center to give her in case the Ativan didn't work.

And of course after settling her in at home I went over to pick Sarah up and guess what... a fever of 101.6. So both girls are settled on the couch for now and going to bed early.

Please continue to pray for Hanna and that this radiation will be easy on her physically and that she kicks this infection so that she can return to the happy girl we know her to be, also for Sarah to feel better and lastly for Rob and I to have the strength to handle the next few weeks.

Love, Rob, Jen, Hanna and Sarah

Monday, May 1, 2006 3:44 PM CDT

Well after a week of school Hanna has a fever, stuffy nose, cough, still cannot sleep through the night and her anxiety level is at full tilt. We called clinic this morning and were told to come on in and they would put us to the front, unfortunately we are VIP patients now, not a title we wanted. So after meeting with Dr. Ahuja Hanna is now on Ativan for her belly and anxiety and an antibiotic for infection and a decongestant for her stuffy head. There are a few other things going on, like pain in her shoulder that is not consistent, but Dr. Ahuja felt like this was from her lack of sleep and said that if she starts to complain more often then bring her in and they would do a CT right then. Part of the VIP treatment !!

So we have all come to the conclusion that although school seemed like the best place for her to be, right now we don't think she is ready. The seperation is so much harder on kids like Hanna, who are always with a parent going through medical things. We even talked to Dr. Frangoul about this and he said that they see this all the time, the kids who start school back so late in the game get very depressed because their 'normal' changes to fast. For now we are settled into the lake to give me a break and since Rob is in Nashville again for 3 days we are closer here so he will come here at night.

It's hard to determine when a normal cold or allergy is just that or when it's a sign of something more. Unfortunately this is how she has acted everytime she has relapsed, except this time she is in no pain. Which is a BIG plus. So hopefully the change in scenery and the medidines that the Dr. put her on will help before we start radiation on Wed.

Thank you for your continued love and support.
Love, Rob, Jen, Hanna and Sarah

Thursday, April 27, 2006 7:40 PM CDT

Well we thought that a week without Dr.'s was to much to wish for and it was. Rob came home last night and Hanna immediately started saying that her shoulder blade area hurt. After looking and feeling around we found that a stitch was coming out of her incision and was causing the area to be very tender and red. We thought infection, but after meeting with Dr. Nagaraj this morning we found out it was no big deal and after he clipped it out it stopped hurting her. HURRAY !! Rob had felt a hard spot under the skin right where the incision is and we were told that that is another stitch working it's way out, if it becomes painful we have to take her back in to have it clipped out as well.

Then it was on to Dr. Samson's office to get her physical for school. Where she proceeded to have a fever of 100.8. Can we not just have a normal Dr. visit? Her fever went down with Advil and has stayed down all night so we aren't sure what that was. Probably trying to give mom and dad a heart attack. So after doing a great job at dinner and doing most of her catch up homework, she is finally asleep in bed. Hopefully she will sleep better not being in any pain, evidently she had been hurting all week and didn't want to tell me until daddy came home.

She has promised me that she is ready to return to school tomorrow and will try to make it a full day. Also, her radiation as been pushed back until May 3rd. Not sure why all I know is that now I have to hurry and get it approved through the new insurance. Explaining our situation to a new insurance company should be lots of fun !!!!

Thank you for the continued support and prayers,
Rob, Jen, Hanna and Sarah

Wednesday, April 26, 2006 4:40 PM CDT

The past two days of school have been very exciting for Hanna. Tuesday we did the same routine of me taking her into her class and then leaving and coming back for lunch, then coming home to rest for a few hours. But today she enjoyed lunch with her classmates and almost made it the whole school day. I recieved a call from her teacher at 1pm saying that she was very tired and wanted to come home, so tomorrow she is going to try 2pm and see how it goes. The big news of the school day events was getting to chase Seth around the school yard with Tori, and her new friends, Dolly and Hailey. Then today was music class, she said the music teacher is very funny and that she really enjoyed it. She also says the boys won't leave her alone, I said it was because she was so cute and of course in girl fashion she rolled her eyes at me and said ' MOOOM '.

The bad part has been that Rob started his new job on Monday and he has been in Nashville training, this is the first time he has been away in almost 2 years. So Hanna has been having a hard time at bedtime without her daddy to tuck her in and gossip about the news of the day. Even when we were in the hospital Rob always spent the night with us. But he is on his way home so hopefully Hanna will get a much better nights sleep and be ready for a full day tomorrow.

Thank you for your continued support and prayers. Hanna started crying that her back hurt yesterday and it was all I could do not to call the Dr.'s and schedule a CT. She says that she is not in any pain, just really tired, so I think it was the way she was sitting in the chair. We have always been afraid that this would come back but we never expected it to return the way that it did, so every little hurt scares the life out of us. All we can do is pray that the radiation will be enough to stop it, but I will forever fear another day like March 22.

Please keep her and all the wonderful kids fighting this awful battle in your prayers.
Rob,Jen, Hanna and Sarah

Monday, April 24, 2006 4:23 PM CDT

Hanna's first day of school was a success !!!!!!

She was very nervous and scared this morning, but after spending a few minutes in class without mommy she seemed to be doing well. And with tears running down my face I forced myself to leave the building. I joined her at lunch and Mrs. Chambers said that she had been doing very well but that you could tell she was tired. So after having lunch in the cafeteria and going back to class we said goodbye until tomorrow and came home where she took a 2 hour nap.

After she woke up she was full of news of the day, the kids that she talked to, and the things that they did. It was wonderous to hear her chatter on about kids in her class and she was VERY excited about the library. She even said that the principal, Mr. Reese, is very nice.

I want to thank everyone at Simpsonville Elementary that made this day so special for her, she had a great time and can't wait to go back tomorrow. You can't imagine the joy of seeing her spread her wings after what we have all been through.

God Bless
Rob, Jen, Hanna and Sarah

PS. School pics are updated

Friday, April 21, 2006 3:17 PM CDT

We have spent today running around trying to get all of Hanna's paperwork in order so that she can start school this monday. I was under the impression that CATS testing was going on next week and had decided not to send her in the middle of that, but we were informed this morning that the kindergartens will not be testing. So we have called everyone we needed to call, had paperwork faxed from the clinic and an eye exam. Now we wait for monday and enjoy the wonderous knowledge that, for now, all is well with the world.
Hanna will still start radiation on May 1st and she will probably take a few days off school to see how she does. But as long as things go well the plan is to let her go to school in the morning and take her to radiation in the afternoon, then home to rest. Of course all of our excitement doesn't shadow the fact that I will be letting her go for the first time in 2 years, it is our first day of school. So I have to admit that I will probably be in the parking lot of the school for most the day, however I am so trully proud of her and thankful for this oppurtunity. Last month I was crying because I didn't think she would ever be able to experience school, and now I am thanking God for our prayers answered. We still may not have forever, but we have for now, and I will take anything I can get.

Thank you for your continued love and prayers,
Rob, Jen, Hanna and Sarah

Wednesday, April 19, 2006 8:15 PM CDT

WOW !!!!! What a week we have had.

Fri. afternoon Aunt Kate, Grandpa and Melissa came in for the weekend and the fun started with a cookout and enjoying the family.

Sat. started with swimming lessons, Hanna had to ditch hers because she was suppose to start when she relapsed. So I took Sarah to her lessons while Dad and Aunt Kate took Hanna to the 'fun' pool, then it was home for an Easter Egg hunt and naps before church. Don't we look good all cleaned up !!

Sun. we tried to lay low, but that wasn't working for Hanna so Mimi and Poppy headed to Uncle Mike's and we headed off to Tumbleweed on the River and the play park. Then home to hang out with friends in the playroom. I wish I could bottle the girls energy, they go like the energizer bunny. It's wonderful !!!!!

Mon. brought a goodbye to Aunt Kate, Grandpa and Melissa and another adventure. Hanna's first concert !!!! We headed to Nashville and the Opryland Hotel where we had dinner and left Aunt Krissy with Ella and Sarah while we went to the Ryman Auditorium to see Martina McBride. We were so proud of Hanna, she was tired after the first hour but we asked her to hang a little longer and she did, she made it through the whole concert. I have to admit that last month at this time I trully did not think we would be going to the concert, we even asked a few people if they would want our tickets. I felt so much joy at being there with Hanna and Rob that I looked to the heavens and thanked God for answered prayers.

Tues. we all woke up late, took a nice walk around the hotel and had breakfast. We even made it to the big mall for a short time before heading to Vanderbilt to meet with Dr. Frangoul. He was so surprised at the way Hanna looked and couldn't believe that she had recovered enough to go to a concert. We did talk to him about our course of action and he agreed with it, his only comment was to make sure that they do her scans every month. And was adiment about not getting xrays instead, he says they will not show what we need to see. But he was very happy with what the reports had shown and thought that we might be fine after radiation. Hurray, hope, we LOVE hope !!!

So we made it to today and our appointment with 'Dr. Sillyman'. Hanna had her scan and recieved purple body paint for radiation. The purple paint is the markings to keep her straight on the machine, they won't wash off until we alcohol them after radiation. He did change her start date to May 1st from April 24th, so we have a full week with no Dr's. Can you believe we can even say that after what she has gone through lately?
Of course never to slow down, it was ' We have to take Krissy to the zoo', so home to grab everyone and strollers and off to the zoo. Then dinner and American Idol. And now we are settling down for bed. Finally !!
Although it will be sad to send Krissy and Ella off tomorrow, we will miss them greatly, we have had a great time. It has been soooo good for Hanna ( and Sarah ) to see everyone and get to share her daily adventures, and I know everyone has loved being able to see her at her fullest.

Thank you all for your continued prayers and love, we cannot explain enough how much your messages mean to us.
LOve, Rob, Jen, Hanna and Sarah

Thursday, April 13, 2006 4:56 PM CDT

Once again Hanna never fails to amaze us. The appointment with Dr. Nagaraj this morning to remove her stitches has been on Hanna's mind for the last few days. But Dr. Nagaraj put her right at ease and worked quickly and before too long all 150 stitches were out. Although it was an emotional meeting, Dr. Nagaraj performed Brooke's surgery as well and he was the one who had to tell us on the 22nd that he didn't think he would be able to remove all of Hanna's tumor. These kids are so very special to him, but after a few tears from all of us Hanna walked up and gave him a HUGE hug. He said that it made his day, and I know that it did.

After that it was off to Tumbleweed by the river for lunch where Hanna enjoyed eating outside and watching the 'swans' in the Ohio River.

Then onto our meeting with 'Dr. Sillyman", who started out by showing Hanna all the toys in his pocket. He said that at the Dr.'s meeting on Mon. she was the star of the show. It's so great to know that the Dr.'s trully are colaberating to find the best option for us. And that option is that she will go in on the 19th to have the CT and mark her. We will start radiation on the 24th and it will last for 10-12 days. This is longer than her original radiation of 8 days in Nov. 2005, they also have a new machine ( which he said they bought just for her )that will make it easier to 'sneak ' into the areas that they need too. He explained it as 3 layers of saran wrap that they had to get in between, the 3 layers being the linings of her heart, lung and liver. Of course they still have to tell you the bad stuff, as if we need more, but all we can do is pray that this 'clean up' as they call it will work. As Dr. Nagaraj put it hopefully after these next few weeks we will be 'Home Free'.

We thank God daily for the progress and the hope that he has given, not only to us, but to the Dr.'s as well. Hanna is our child, but she is trully loved and cared for by the professionals who have to face this disease in all it's awful forms. Please keep them in your prayers, they trully have hearts of gold.

Love,
Rob, Jen, Hanna and Sarah

Tuesday, April 11, 2006 5:22 PM CDT

BIG SIGH !!!!!!!

We met with Dr. Soni this afternoon and got the news that
we had wanted to hear. After discussing Hanna's case at the weekly meeting all the Dr.'s ( including Frangoul from Nashville ) feel that our best option is to do radiation of the lower lung and abdomenal bed and wait and see. Dr. Nagaraj says that he thinks the tumor came from a lyphnode that had not originally been radiated. So we will meet with Dr. Silverman, Sillyman, as Hanna calls him, on Thurs. after she gets her stitches out and they will do a CT and mark the area for radiation. This is what Rob and I had been praying over, the radiation will do damage, there is no getting around that. But I will take her not being able to run hard over not having her at all, and who knows she may still be able to do whatever she wants. Her lungs are already damaged from her initial radiation over a year ago and she still plays hard so you never know.

But the best news of all, which got the BIGGEST smile from Hanna is that she can go to school!!!!! I was very concerned that they were going to say no and I wasn't going to accept that answer, as much as I have enjoyed having her here with me everyday a 6 year old needs school and friends. So even though it will only be for about 5 weeks she's going and she couldn't be happier.

We will also continue CT scans every month for 4 months and then move on from there. We know that this could have been a fluke thing or it could be something that will return, but we have to enjoy her now and trust God. Not that we will ever stop worrying, but we'll try.

Thank you all for your continued love and prayers, this situation could have been so much worse that it has turned out to be and we know it is because of all the prayers God hears for her.

We will be very busy over the Easter weekend, Krissy and Ella are flying in tonight from Oregon. ( OH thank you to everyone who donated to Matt for St. Baldrick's, he raised around $1,000. ) And Grandpa, Melissa and Kate will be in Fri. and of course Mimi is still here. I don't think Sarah's going to let her leave.

Have a Blessed Easter weekend
God Bless,
Rob, Jen, Hanna and Sarah

Monday, April 10, 2006 8:37 PM CDT

Hanna has trully enjoyed herself this weekend. She was alittle unsure of her movements and what she could do early on, but by today she was out swinging with friends and chasing Seth around the house, slowly but still chasing. It was so great to see her smile and laugh. She had a few rough moments, mostly at bedtime and over her friend Brooke. Of course she wasn't the only one, Brooke's passing it us hard, as it did many people. You try not to let your child know that this disease could kill them, that all they have to do is fight and stay strong and everything will be ok. But what do you say when they find out that that isn't true? Well after many tears we've realized that you can only hold on to what you have, and enjoy every moment, because you never know what will happen next.

Which brings us to tomorrow, our clinic appt. is at 1:30. Rob and I feel like we know what the Dr.'s are going to suggest to us, we talked to them alot after the surgery and got their first opinions. And of course we have talked alot, and even though we think they will want to put her back into chemo right away, we would like for her to enjoy being 6. Over the past 2 years she has had to live her life according to Dr.'s and blood counts, now it's time for her to return to school, play with friends and hang out at the pool and lake. We are not saying that chemo is out of the question, the tumor came back to fast for it to be, we just want time to let her be the little girl that she hasn't had the oppurtunity to be. And God willing we won't even have to make the decision to start her back on chemo.

The emotions of the past 3 weeks have brought Rob and I to our knees so many times. We went from her being in pain and being told she might not make it, to her having a tea party with friends and flying kites. God is amazing and we know that he will continue to give us the strength we need to make the right decisions for Hanna.

Thank you for your continued prayers, please keep them coming.
Love, Rob, Jen, Hanna and Sarah

Friday, April 7, 2006 4:27 PM CDT

Hanna is doing very well, she was out flying kites with her friends today and took Mimi to lunch for her birthday. And we are headed out to have dinner and see a movie with friends.

But it is with a heavy heart that we ask that all of you pray for our friends, Brooke and Chloe, and their families. Sadly Brooke passed away last night because of a septic infection. We are all heartbroken and now more than ever we pray that God keep her and her family in the palm of his hands. We are also saddened by the news that Chloe has relapsed and will be going in on Mon. to start treatment for a Bone Marrow Transplant. Now more than ever we understand how important it is to enjoy every minute you have with your family and friends, to hold your children close to your hearts and never let them forget that they are loved. To let all the silly stuff that can get you so frustrated in life go and understand that the most important things in life cannot be bought.

Please keep these as well as our family in your prayers, the road ahead will not be an easy one for any of us.

Love, Rob, Jen, Hanna and Sarah

Wednesday, April 5, 2006 9:13 PM CDT

Hanna continues to improve daily. She was outside most of today, we had a picnic lunch, swung on the swings, went for a walk and chatted with friends. And tonight she is even sleeping in her own bed, of course the baby monitor is near by. We can not say how proud we are of her and how much we love being her parents. We removed the bandage from her last chest tube tonight and even though she has a hard time looking at herself with all the stitches she did say it felt better to get all the tape off. She is trying so hard to move past this. We can only pray that each day brings her closer to her old self.

Rob and I haven't talked to any of the Dr.'s so far, mainly because we are trying to enjoy having her home and healing. We did find out before we left the hospital that the tumor was Wilm's and that it was 65% viable and 35% nonviable. I have no idea what that is suppose to mean to us, except that the whole tumor wasn't viable which to me sounds good. We are anxious to talk to the Dr.'s next Tues. and hear what they have to say. We are not looking forward to the decissions that have to be made, but we will do what is best for Hanna.

Thank you for all your love and prayers. We continue to need them as do all of the families fighting this disease. Our friend Brooke was transferred to PICU after having breathing problems today and Hanna's other friend, Chloe will have a biopsy tomorrow for a lesion found on her femur. This disease just can't leave these wonderful girls alone, please add them to your prayers.

God Bless,
Rob, Jen, Hanna and Sarah

Tuesday, April 4, 2006 8:59 PM CDT

Let me just say that it sure is nice to be home !!!

Hanna, although not back to her run around, play all the time self sure did have fun today. She played play-doh with Sarah, sidewalk chalked with Seth, Ella and Sarah, and even drove her truck !!!! She ended the night with the gang over for pizza and coloring with Mimi. And Thank you Tori, Vicki and Stephanie for the Martina McBride Barbie. Hanna has already proudly showed to everyone who has come by.

We have no Dr.'s appointments until next week and Mimi is going back home sat., so we are hoping to have a VERY quiet weekend.

Thank you for all your continued prayers.
Love, Rob, Jen, Hanna and Sarah

Monday, April 3, 2006 6:25 PM CDT

After waiting all day and 4 xrays we are headed home in the next few hours. Hanna's chest tube did what it was suppose to do and around 7pm Dr. Nagaraj came in and said that things looked good and we could leave. Hanna is so excited to be heading home to Sarah and Turbo, as are Rob and I.

We have an appointment with Dr. Nagaraj this thursday to remove Hanna's many stiches, and the oncology and radiation Dr.'s will be conferring monday at their national meeting about Hanna's case and the next best step. We have alot of positive opinions which is more than we had last week, so we thank God for that.

We want to thank everyone for their love and prayers, we appreciate them so very much. We are planning on spending Hanna's spring break at home resting with a few small adventures if she is up for them.

We also ask all of you to put the power of prayer to work for our friend Brooke. She will be having surgery tomorrow morning to remove a lesion that has grown in her lung. This is her 2nd relapse since transplant and we pray that it be her last.

Love,
Rob, Jen, Hanna and Sarah

Sunday, April 2, 2006 11:21 AM CDT

The unbelievable idea that we would go home today after only 3 1/2 days after surgery seems to have stopped. The doctors have been watching Hanna's left side since we left the ICU because her lung showed signs of collapsing. This is the side opposite of the surgery, but they did insert her central line into this area. After this morning's x-ray, Dr. Nagaraj determined that he needed to remove her central line, the broviac (which we actually wanted to have removed anyway). He is going to insert a line to drain that area in the same insertion site as the broviac. Jenn and I remember that this same thing happened to Hanna after the surgery on her left lung almost a year ago. Obviously we would rather go home today and let Hanna recover at home, but this could become serious in the near future if they don't alleviate some of the pressure in this area and let her lung return to normal. Dr. Nagaraj and one of the nurses stated that this is actually somewhat common for a newly inserted central line to interfere with the lining of a lung. We expect that the surgery to remove the line and insert the drain tube will happen sometime in the next few hours, Dr. Nagaraj is here on a Sunday and will do the procedure. We hope to be home by Wednesday, after her lung has a chance to return to normal and the doctors have a chance to make sure that it will not try to collapse or hold fluid anymore. Please keep the prayers coming, we want to get Hanna home as soon as we can.

Love,
The Evans Family

Saturday, April 1, 2006 4:47 PM CST

Things have been very quiet here on 7west, Hanna is doing very well. We were told this morning that her epidurial and catheter would be taken out today and that we will be going home tomorrow. Can you believe it !!!! Of course it is almost 6 and we are still waiting for someone to show up and remove her lines. Evidently the resident forgot about us this morning. Hanna is ready to be tubeless and is getting very anxious. But the Staples are on there way up so hopefully Seth will be able to distract her.

We were also told that the Dr.'s would perfer that we leave in her central line until we have a plan on what we should do next. If we didn't she would have to be poked for CBC's and scans over the next few weeks, so we ( she ) has decided to keep it for just a little while. So for now we are still just focasing on her getting better and will discuss our options with the Dr.'s next week sometime.

Thank you for your continued prayers, their working because we are coming HOME tomorrow, HURRAY !!!!

God Bless,
Rob, Jen, Hanna and Sarah

Friday, March 31, 2006 3:15 PM CST

Sorry about not getting to update until now, we were moved out of the PICU around 11:30 last night over to 4 East. It is the surgery recovery area and there were no computers. But it was a great sign that she was moved only 27 hours after an 8 hour surgery. And we have been moved again up to 7 West ( our floor ), so Hanna is much more comfortable with her surroundings and the nurses. Who knows at the rate she is going we might be home by the end of the weekend !!!!

Not only has she been moved but she has had her arterial IV removed and her chest tube. She only has the epideral, the catheter and her central line. We were told that the IV and catheter would probably go tomorrow. And the best is that she is eating, Dr. Nagaraj came in and asked if she was ready for a burger, she said she was ready for taco bell. So she has had chicken nuggets and apple juice and is waiting for dad to order Spaghetti Factory, finally she seems to be starving !!

We are so proud of our little girl and how strong she has been through this whole thing, she is ready to get home and play with her friends. It must be all the prayers she is getting, please keep them coming.

Thank you for all your prayers and thoughts,
Rob, Jen, Hanna and Sarah

Thursday, March 30, 2006 7:28 AM CST

Hanna was in and out most the night, not much pain but uncomfortable, of course if I had the tubes that she has coming out of me I would be uncomfortable also. Her fever went to 101.2 only once and Tylenol got it under control. She is doing so well and has even yelled at the nurses for not letting her have anything to eat or drink. Dr. Nagaraj came in this morning and said that he wanted the tubes to stay until tomorrow and still no food or drink until after 4pm, he was amazed at how well she was talking to us. He must have forgot that this was surgery #13 for our little Hanna, she knows the ropes !! Now we wait for her to recover and spend this week figuring out our next step.

The technical stuff : Hanna has a catheter, chest tube, an arterial IV in her right hand and another IV in her left. An epidural PCA and oxygen going into her nose, and ( unfortunately ) a central line, plus lots of monitors attached to watch blood pressure and heart rate. The central line had to be put in for surgery to measure how stable she stayed during the radiation since no one could be in the room with her. We have discussed the need for it now and are not planning on bringing her home with it. Rob and I discussed that if a visible sign of the tumor remained then we would go straight into chemo, if not ( which is the case ) then we would not put Hanna through chemo without knowing that the drugs we were using were working. So we are going to go over more radiation options with our Dr.'s and the radiologist. But for now we are settled into the PICU at Kosair and only worried about Hanna healing.

Thank you all for your love and prayers, yeaterday was hard but we knew we had so many praying for her that it had to be ok. And for what she had in her we did get the best news we could get.

God Bless,
Rob, Jen, Hanna and Sarah

Wednesday, March 29, 2006 2:42 PM CST

Dr. Nagaraj saw us at about 2:45 p.m. and told us that everything went better than he expected. He removed what he said was 99% of the cancer, the 1% he could not comment on was the tumor cells that probably remained in the tissue around her heart where they could not scrape away tissue without putting her in serious danger. They were also able to do the interoptic radiation after the tumor was removed to hopefully prevent the tumor from returning in that area again. The tumor was evidently not attached to any of the organs, it occupied the area between the lung and the liver (actually behind the liver). He said that it was in an area that the original radiation did not likely hit because the liver and ribs blocked the area. He also commented that it was what was most likely causing the bend in her spine because of the pressure it was applying to the spine and the ribs. We were told quickly that the tumor came out, without being attached to any organ it evidently was anxious to come out and leave the tight space it was in. The only better news we could have recieved from Dr. Nagaraj was that it was something other than a tumor, but he was very confident that it was cancerous and appeared to look like a Wilm's tumor. Thank you for all of your prayers, they are helping - please keep them coming because we are going to need a lot more of them to keep this from returning again. Hanna will be in the ICU for a few days and most likely in a normal room at Kosairs for more days after that, Jenn and I will get some time and hopefully some good advice from our great doctors on what we can do to help her heal and attempt to stop this in the future. Thank you again for all of your help and prayers,

Love,
The Evans Family

Tuesday, March 28, 2006 8:27 PM CST

Rob and I want to say a special thank you to everyone who came by our house tonight to pray for Hanna. What an amazing sight to see so many candles and faces, surely God saw and heard you.

We will let someone in the neighborhood know how tomorrow goes, and they will pass the word on. I am not sure if there is a computer in the PICU area, but if not then at the end of the day one of us will go up to the 7th floor and update.

Thank you for your continued love, support and prayers. We need them now more than ever.
God Bless,
Rob, Jen, Hanna and Sarah

Tuesday, March 28, 2006 9:00 AM CST

Yesterdays appointment was a little disappointing, Dr. Jose came in and informed us that he was not sure if the intra-radiation could be done because of the size of the tumor. The largest radiation cone they have for this machine is 6 cm X 6 cm, Hanna's tumor a week ago was 8cm X 12cm. Although this doesn't sound good it still has a chance, they only need to radiate the area where the tumor is attached. So if the attachment spot is no bigger than the 6x6 cone they will still radiate in surgery, if the attachemnt spot is larger they will insert the radiation pellets and radiate after surgery. This all too is determined by if Dr. Nagaraj can remove the whole tumor, if not then we do radiation and chemotherapy.

It's all very confusing and has so many determining factors that until they come out of surgery and tell us what they found we are unsure as to what happens next. Rob and I have spent alot of time discussing how we want to handle all of this, we are the decision makers this time there is no protocol to help us out. We have spoken with Dr. Frangoul at Vanderbilt and someone at St. Jude and of course all of our Dr.'s here. Everyone is working very hard to find a way to help Hanna, and that is all we can ask right now.

Thank you for your love, support and prayers.
God Bless,
Rob, Jen, Hanna and Sarah

Sunday, March 26, 2006 8:49 PM CST

The days seem to move in slow motion. Hanna hasn't been very active because the pain medicine puts her to sleep, so we have been hanging out on the couch with cartoons and an occasional card game. Although today brought her outside to go for a ride in the wagon and asking for more food, not that she ate alot but atleast she asked for things. However, the pain seems to be getting worse and we had to call Dr. Ahuja to see if we could up her pain meds. He agreed and she ended up taking a 3 hour nap after her wagon ride. This is making things harder for Rob and I, we can't stand that this thing is growing inside of her and we have to wait until wed. to get it out.

Of course there is always Sarah to make us laugh, and she does. She can even get a smile out of Hanna. And we are so lucky to have the amazing family that we do, my mom and dad have moved in until whenever, and my brother, John, flew in from Houston on Thurs. My brother Michael was here until yesterday when we traded him for Rob's sister, Kate, but he'll be back tues. night. And thank God because they are all entertainment for Sarah. With not leaving Hanna's side I don't get to spend the time with her that I did a week ago, but she has plenty of playmates for now. And it's sad to say but this is really all she knows of Hanna. Hanna was diagnosed before Sarah even turned 2 so to her this is normal.

Tomorrow is our meeting with Dr. Jose and Hanna is nervous as you could imagine. She doesn't like us to mention anything about the hospital or surgery and if she over hears you talking she starts to scream. Our little 6 year old has heard way to much in the last two years, I pray that this surgery is the answer we so desperately need.

God Bless,
Rob, Jen, Hanna nad Sarah

Saturday, March 25, 2006 12:35 AM CST

Rob has been updating this because I can't seem to find the words to say. But I wanted to thank everyone who is praying for Hanna ( and us ), and to thank everyone at Simpsonville Elementary School who took a few moments of silence to pray for Hanna yesterday. Also to the W.O.W. for holding a prayer meeting for Hanna last night, I would have loved to been in that room and feel your power.

Rob and I have spoken to every Dr. that we have ever been in contact with and although not everyone agrees on the next course of action, most agree that this surgery is our best option for the present issue. So we will take Hanna to meet Dr. Jose on monday, he will be performing the radiation during the surgery. And wed. morning at 6am we are to go to Kosair where they will prep and transport her to University Hospital for the surgery, afterwards she will be transported back to Kosair's PICU (Pediatric Intensive Care Unit ). We were told the surgery and radiation will take about 6 hours and that she would be in the PICU for atleast 5 days then moved up to 7west for another 5-6 days.

That is what we do know, what we don't know is how much of her lung and surrounding tissue will have to be removed and what the next step will be after she recovers from the surgery. There is a new chemo drug that she has never had before, but once again the question is do we put her through more chemo in hopes that this one will work or do we trust in the knowledge that it has only returned in one spot and that that spot can be contained for the present? We are in uncharted waters at this point, and the only choice we have is to keep Hanna with us for as long as possible. As her mom it hurts to have to write those words. The emotional devastation of these past few days is uncomparable, how do you become the person who must decide when the fight is over? Rob nor I can wrap our minds around that right now, wed. and thurs. were extremely horrifying days. We were not given much hope, and when someone takes your hope away what are you left with? Then God granted us our hope back through Dr. Nagaraj and this surgery, now we hang on to any hope we can get and take in her beautiful face and smile.

Thank you for the unconditional and ever flowing love and support that you all give.
God Bless,
Rob, Jen, Hanna and Sarah

Friday, March 24, 2006 7:27 AM CST

Hanna has had a head and bone scan over the past two days and they have both come back fine. We were originally going to go into surgery today to remove as much of the tumor as possible, but after a phone call this morning from Dr. Nagaraj (her surgeon), we are going to take a different course of action. Dr. Nagaraj really wants to give Hanna the best chance he can at living the best life she can, we knew from the beginning that Hanna had a little sweet spot in his heart - his nurses have confirmed this a few times. He is going to speak with Dr. Silverman (Hanna's radiologist) on Monday to plan a little different kind of surgery. They will plan to remove the entire tumor and then insert a radiation device into Hanna and actually radiate the area where this tumor returned. He thinks there is a possibility that an area was covered by the liver during her initial radiation treatment and that tissue is where this tumor has returned because it has not come back anywhere else. They will also plan to insert some small radioactive pieces into her that will fade over time. The idea is to stop this area from having any recurrence and maybe give her a chance at more time, which we all desperately want. This is not a cure, he was specific about that, but it is most likely the best chance at prolonging things resulting from a surgery. We continue to be blessed with some of the best doctors you could possibly ask to have in your child's care. The wait until MOnday or Tuesday will be painful, but as long as it gives her a better chance we will easily bear it. Thank you all for your notes of kindness and please keep praying for Hanna and the rest of our family.

Love,
The Evans Family

Wednesday, March 22, 2006 9:18 PM CST

Hanna, Jenn, and I are spending the night at Kosair Children's hospital for the first time in almost a year. I wish I could say that we missed it, but we are unfortunately here for reasons that we wanted to never experience again. After having a lot of pain for the last few days around her ribs and a CT scan yesterday, the doctors discovered that a new tumor has grown near where her right kidney was removed a year and a half ago. Thanks to some medication, Hanna is not in any pain now. As far as they can tell it is the only thing that has returned, but knowing that there was no sign of it 3 weeks ago when we had x-rays done and now having a tumor about the size of a tennis ball is causing a tremendous amount of fear from us and the doctors. Hanna had a head CT earlier this evening and will have a bone scan tomorrow to verify that it has not spread to other areas. As long as it has not spread to any other areas we will most likely have surgery on Friday to remove the tumor. We are not sure about treatment after the surgery, the doctors said they will collaborate about our options. The return of a tumor tells us very clearly that the stem cell transplant did not cure Hanna's cancer. Please pray for Hanna as often as you possibly can and also pray that Jenn and I make the decisions that will allow her to enjoy her life to the fullest. I am sorry that most of you will find out about this through this computer page and not by one of us in person, but we will be staying by Hanna's side as much as we can for as long as we can.

Love,
The Evans Family

Monday, March 20, 2006 8:21 AM CST

Day +220

The anticipation of the St. Baldrick's event was a little too much for Hanna to handle yesterday and she ended up only staying long enough to see Megan and her friend Colt shave their heads for her. The weather was alittle chilly and the event itself is hard on her. As adults we see this as a way to raise money to help children diagnosed with cancer, as a 6 year old who has gone through cancer the opening ceremony, which is very emotional, and the head shaving brings back to many memories. Most of the cancer kids down there had a very hard time and wanted to go home. But on the upside, the event raised over $220,000. just from cash donations yesterday and internet donations. And over 400 shavees were registered with another hundred or so walk ins. What a success !!!!!

On the down side, Hanna continues to complain about her right side hurting her. We are unsure if this is from her lack of appetiate, the fluid in her lung or something else. She also is having a hard time mentally, the nightmares have returned, which causes her to not sleep well. She has a CT scan scheduled for this fri. and Rob and I are very anxious to find out what is going on with her. She is basically scaring us to death, she says that she knows alot of it is in her head but she just can't stop it.

Please continue to pray that Hanna's nightmares end and that her CT scan is clear but gives us some insite to her pain. We always pray for normal days and truthfully I am not sure what those really are. There will never be a time when we are not worried about what the next test will say.

Love,Rob, Jen, Hanna and Sarah

Wednesday, March 8, 2006 10:06 AM CST

Day +198

The last few days have been remembrances of bad days gone by. Mon. was a Dr.'s appointment that lasted 6 hours, and yesterday was another trip to the clinic for blood work and xray check. Hanna's xrays are good, she seems to have alittle fluid around the right lower lobe of her lung. Could be phnemonia, could be nothing. They are moving her CT scan date up a few weeks so that it will be done before the end of March. But NO LESIONS !!!!!!! I can live with fluid, it's sad that we pray for her to have phnemonia. Then last night at 6pm Dr. Raj calls and tells us that her blood sugar level is extrememly low and he wants to have it tested again - now. So Rob and Hanna take off to 7west to get it tested and it turns out that it is fine. It went from 40 to 108, she has not been eating well lately at all. It seems we fight at every meal, we have always had trouble with this and with her losing almost 12 lbs. since transplant and the drop in her blood sugar level we are determined to get her to eat anything and everything.

Of course the highlight for her was getting to see her favorite nurses, Megan and Nicole. And get 2 balloons from the balloon lady. Megan asked Hanna to shave her head at St. Baldrick's on the 19th, we are all looking forward to seeing Megan go BALD. If you haven't checked out the website please do, www.StBaldricks.org, look up Megan Habich as a shavee and you can donate in Hanna's name.

So today we are laying low, no Dr's, no pokes, just food and fun ( and laundry and cleaning - oh that's me ). Thank you for checking in on us and please pray that Hanna starts to eat more and that her upcoming CT comes back clear.

Love, Rob, Jen, Hanna and Sarah

Monday, March 6, 2006 6:14 PM CST

Day +196

Hanna's right side has been hurting over the weekend so this morning when she couldn't get out of bed on her own I called the clinic and off we went, again !!! After about 6 hours, 2 exams, and 5 xrays we are still unsure as to what is causing her pain. We are scheduled to go back to clinic on wed. and get the xray results. One thing we did find out that is not what we were hoping for is that she has scholiosis ( curving of the spine ). We were told that her radiation could cause this and well it did, so she has an appointment at the Leatherman Spine Center on March 29th. We are not sure how having this will effect her but we have lots of questions to ask already, once again we face something that we are very unsure of. It seems to us that the radiation did nothing but harm her. We as a family are so tired, I have no idea how parents who go on and on with this deal. Right now I just pray that nothing else will touch her precious body, and for a peaceful life, even day, without specialist and hospitals.

Please pray for clean xrays for Hanna and strength for Rob and I.
LOve, Rob, Jen, Hanna and Sarah

Wednesday, February 22, 2006 8:33 AM CST

Day +184

Well things never seem to stay calm for long around here. After having the miscarriage and surgery on thursday my parents came up to help out. Sunday morning at about 4am Hanna spiked a fever of 103.3 and couldn't stop coughing, our first thought was phnemonia. We took her to our local emergency room and they diagnosed her with croop, so she is on steriods and zithromax. They took an xray to make sure her lungs weren't filled with fluid and found a button !!!! She hadn't taken her jammy top off and it had buttons on it. So things continue on, I'm on bedrest ( hahaha), Hanna has her first real cold in over a year and Sarah and Rob just want us all better so life will get back into a groove. I have a Dr.'s appointment on Thursday and after that mom and dad are heading back home. And hopefully no more phone calls that rush them up here. Hanna's Dr.'s appoinment has been changed once again to March 7th and her hearing test is on March 6th. So other than a button on an xray she is still cancer free. Thank God !!!!

Thank you for still checking in on us, we continue to need your prayers.
Love, Rob, Jen, Hanna and Sarah

Friday, February 17, 2006 1:08 PM CST

Day +179

I know this is Hanna's journal but I made the mistake of putting our good news up before I should have. I had an Eptopical pregnancy and had to have surgery yesterday to remove my falobian tube and right ovary. The girls are fine, alittle disappointed as we all are, but we will keep trying to have another baby after I heal up. Thank you for all the congratulations we wish this would not have happened but we have learned that things happen for reasons we will never understand.

Love, Rob, Jen, Hanna and Sarah

Monday, February 13, 2006 7:50 PM CST

Day +175

Things here continue to go smoothly (knock on wood). Hanna was given Claritin for her cough and it was gone within days, Sarah broke out in hives and we think she is now allergic to Amoxicyllin. And the best news of all........... Hanna and Sarah will become big sisters this September !!!!!! We are all very excited, although alittle nervous, to have a new little one around. We figure this is a great way to start a new and wonderful year. Hanna will continue to be cancer free, Rob will get the job he has been hoping for and a new life will join our circle.

We hope that everyone has a very loving Valentines Day and if you have time please stop by your local Red Cross Center and give blood. Tommorrow is "Cubs for Kids", when you donate blood they will let you write a message that will be attached to a teddy bear that will go to a Kosair Kid when he/she gets a blood transfusion. Blood transfusions are such a huge part of a cancer childs life, if you can spare a few minutes out of your day please donate. And leave a special message for a child in need.

God Bless and please continue to pray for Hanna and our new little one. And Sarah of course !!!
Love, Rob, Jen, Hanna and Sarah

Wednesday, February 1, 2006 9:27 AM CST

Day +163

Well after trying to talk our Dr.'s into letting Hanna attend school we still have a no. Dr. Frangoul was the only one who agreed that she could go back, Dr. Cheerva and Monica both feel that we should wait until her CD4 count is higher. We have an appointment on the 21st of this month and are hoping to discuss this further with them. Besides that things are going well here, Hanna and Sarah have the cough and sneezes that are going around, but are not in bad shape. We are headed to Mimi and Poppy's lake house next weekend, Rob and I have a night at a bed and breakfast and the girls can't wait to spend the night with Mimi and Poppy. Hanna hasn't been able to spend the night with them in so long because she always had her line and they didn't want to mess up taking care of it. Of course after spending so much time there this past summer Sarah thinks it's her 2nd home, as it should be. We will update around the 21st and let everyone know if school could still be on. We pray that it is, Hanna is ready to be with her friends and learn with them.

Thank you for still checking in on us, we trully appreciate it.
Love, Rob, Jen, Hanna and Sarah

Monday, January 23, 2006 11:41 AM CST

Day +154

We are still rejoicing in Hanna's clean xray, the weekend was full of friends and fun, as it usually is. So the news of today wasn't as bad as it could have been. Hanna's CD4 cell has not recovered from the stem cell transplant, meaning no school. The CD4 count is at 157 and needs to be at 550, so we are now under the impression that she will not be able to attend kindergarten this year. However, we have learned to never say never and are checking with Dr. Frangoul to see what his thoughts and requiremnents are. We feel like if she can go to Disney, church and friends house, why can't she go to school. So it's not a definate no yet. We do want to do what's best for her so we won't force the issue, just ask for a second opinion and see what we get. If Dr. Frangoul says no school then no school it is, but if he says yes then I think we'll have to go with his opinion.

I also what to ask that all of you check out the St. Baldrick's Day website, the date for this years event is approaching and we need your help to raise money for childhood cancer. The website is www.StBaldricks.org and if you would like to become a shavee or donate in Hanna's name you may do so by going to (Find Shavee) and entering Megan Habich at 4th Street Live, Louisville, Ky.. Megan is a nurse at Kosair Children's Hospital and is shaving her hair off in honor of Hanna, please help her reach her goal of $1000.00 for children fighting cancer. Thank you for your love and support and if you live in or near Louisville please join us on March 19th at 2pm for this fun and inspiring event. If you would like to volunteer for an event in your state you can go to the website to find an event near you.

LOve, Rob, Jen, Hanna and Sarah

Friday, January 20, 2006 4:32 PM CST

Thank you for all of your prayers -- THEY WORKED!!!!

The last 48 hours have been very tense in the Evans house because of an x-ray on Tuesday that showed "something", but the CT scan we had this morning showed no signs of any cancer in Hanna. We can't thank everyone enough for all of the prayers and even though it was a difficult 48 hours we thank Dr. Cheerva for being the great doctor that she is and caring so much for Hanna to make sure the x-ray was wrong with the CT scan today.

Love,
The Evans Family

Thursday, January 19, 2006 9:06 AM CST

Day +150

You know that feeling when you are driving your car and all of a sudden the person in front slams on their brakes and you swerve to the side barely missing the back of their car. It's like the bottom falls out of your heart, well it's not quite the same but it's as close as I can think of. Yesterday afternoon we got the call from Dr. Cheerva that Hanna's xray showed a small spot in her lung where a staple had been. This could be one in a million things or it could be the one thing in a million that we fear. Hanna is scheduled for a CT scan tomorrow morning at 10:30 and we should know either way be tomorrow afternoon what we are dealing with. Rob and I have discussed the worst thing and are in no hurry to rush her into another surgery or chemo. We have asked Dr. Frangoul to get on board if there is a need. But for now we can only hope and pray, it's very hard we have had so many set backs but we are trying to believe the best.

I know all of you pray for Hanna, but please pray for extra strength, she'll have to get an IV line in the morning. And for clean scans once again, unfortunately Hanna knows all to well what could happen and she is very scared. As are Rob and I. Thank you for your constant support.

LOve, Rob, Jen, Hanna and Sarah

Tuesday, January 17, 2006 6:46 PM CST

Day 149

Once again we have had an uneventful clinic appointment. The only thing that held us up was another unexpected xray, but we were told that we should get an xray every month and a CT every 3 months. So next month we'll know to expect one. The Tcell test will take 48 hours to get back, so we are still waiting to see if school is in our future. Hopefully by the end of the week we will have all the answers from the xray and the Tcell test.

Of course none of this has slowed Hanna down. She has started gymnastics ( SHHH !!!), it's not one of our allowed outings. But Sarah started and I didn't have the heart to tell Hanna she couldn't. We have started taking her back to church regularly and she is loving Sunday school, she cries if she has to go into the sanctuary because were late. She went roller skating for the first time this past sunday and after falling a few times seemed to get the idea of it. She even got her ears pierced again shocking Rob and I who thought she would never do it again. Of course we have spent the nice days outside and at the zoo, giving the girls lots of chances for fresh air. Which seems to result in less fights, you would think that after everything they have been through they would not fight, but their true sisters and are usually at each other. And even though I get upset I have to walk away sometimes and laugh, remember the times when she never talked or raised her voice because she felt so bad.

We will update when we know the results of her tests and until then please continue to pray for good health.

Love,
Rob, Jen, Hanna and Sarah

Monday, January 9, 2006 11:28 AM CST

Day +139

If the weekend is any indicator as to how Hanna is doing then we are good !!!! Rob and I sat back sunday night and realized that this weekend Hanna had acted more like a 'normal' child than ever before, and it was a wonderful realization. With girls night with mom and Sarah on friday night, to 2 birthday parties, church and dinner with friends sat. and sun. nights. She was the little social butterfly that we know her to be. Now if we can get her in school things will be grand. We are so looking forward to her clinic appt. on the 17th, who ever thought we would look forward to seeing Dr.'s and having blood drawn. But she is so excited to get back into the groove with her other friends and we are just as excited to see her do it, it's been a long hard rode and going to school brings back the normalcy that we lost over a year ago.

I have to thank you all for hanging in here with us and for lifting our spirits when we needed it most. What a gift of friendship God has given us in each of you. Please continue to pray with us for Hanna's continued recovery and for those that are still fighting, we lost a caringbridge friend on Dec. 8th and have 3 more who are facing a beyond difficult decision. We pray that these families find strength and peace to guide them.

Love, Rob, Jen, Hanna and Sarah

Sunday, January 1, 2006 7:33 PM CST

Day 132

Happy New Year !!!

Hanna sure was a busy (in a good way )little girl this past month and we are so very happy that she was. We only had one clinic visit in Dec., besides the Dec. 2nd all clean scans, so that was very different for all of us. She held Hanna's Day of Hope and collected enough toys and money to give hope to the children at Kosair and Vanderbilt. With enough left over to donate to Curesearch. She was able to attend her schools Christmas Party and meet all her classmates for the first time. It was great, I thought she would be very shy and hang out with me but she had no trouble spreading her wings. It was wonderful to see, I actually had tears in my eyes watching her with the other kids, corny I know. We went caroling around our neighborhood with some of our neightborhood friends and she had a great time singing all the Christmas songs, then a Christmas exchange with our close friends. Christmas Eve was the best though, we picked up the dinner for the hospital and took it and the toys up around 2pm. She and Sarah pulled 2 wagons and dad pushed a cart full of toys for the children of 7 West, then it was off to church at Southeast Christian. Afterwards we held a Christmas Eve Dinner Party with Mimi, Poppy, Michael ,John ( my brothers ), The Staples, The Hesse's and the Cordrey's. It was a magical day and we praise God for allowing us to all be together and healthy. Then of course Christmas morning meant more presents and food and wonderful times with our family. The next party was for Sarah's 3rd birthday on the 27th, more presents for her ( someday she will not like a Christmas birthday but for now it works). Then of course a New Years Eve Party with the neighborhood gang, the kids all made it until midnight when they went outside banging pots and pans and blowing horns.

Of course the best part of all of this is that Hanna is healthy and happy and growing stronger every day. Last year was filled with fear and hope, I think this year we will just have hope.

Happy Hew Year to all and please continue to pray for Hanna and her friends. Some are fighting a very tough battle right now and need hope for a better future.

Love, Rob, Jen, Hanna and Sarah

Tuesday, December 20, 2005 6:39 PM CST

Day +120

Today was clinic day and things went very well. We saw Dr. Soni who was very impressed with how well Hanna is doing and after answering a few questions for us said " he had nothing left to say". That's a good thing, a clinic appt. that only last half an hour is wonderful. We had asked about school and taking her off her anti-depressant med., he agreed that she should be taken off the medicine and that he would put in orders to have her T-cell checked at next visit ( Jan. 17th ). This is her immune system cell, if it is at a certain level she will be allowed to start school in late Jan. HURRAY !!!! She so wants to go to school and be a 'normal' little girl, besides she is tired of only having Sarah to play with. So things are looking great for her. What a glorious Christmas it is making for us.

Hanna also delivered a bag full of DVD's that she has been collecting since Nov. through her 'Hanna's Day of Hope' and homemade baklava to the nurses at the clinic. She has collected enough money for meals and toys that we have split them between Kosairs and Childrens at Vanderbilt. We thank everyone for supporting her. She was shocked that we had enough to send to both hospitals and it is still coming in. God is good.

We hope everyone has a very Merry Christmas and a Happy New Year, we pray that God gives strength to all of the children still fighting this horrible battle. And that for those, like us, who seem to have made it through we wish you many, many, many wonderous days ahead.

All our love,
Rob, Jen, Hanna and Sarah

Friday, December 2, 2005 10:27 PM CST

Day +102

CLEAN SCANS !!!!!!!!!!!!

What more can we say. We thank everyone who prayed for Hanna and kept her in you rthoughts today. The day was very hard for all of us, but your prayers and strength helped us to be strong.

Our next appt. is on Dec.20th and we will be once a month patients for awhile, our next scan will be in March sometime.

Well it's late and we can't find Hanna's lion, sleeping pal, so I gotta go. But Hurray, what a great day !!!!!

LOve, Rob, JEn, Hanna and Sarah

Sunday, November 27, 2005 7:40 PM CST

Day +97

We always stop to think of all the things we are thankful for this time of year, and this year there are many things.

We are so very thankful to the wonderful doctors and nurses who have helped us so much this past year.
We are thankful for the love and support of our family and friends.
We are thankful for our new friends who have prayed for Hanna without ever talking to her.
We are thankful for the love that grows daily within our little family.
We are thankful for Hanna's continued good health and spirits.
And most of all we are thankful to God for touching our lives.

Hanna's 100 day checkup is coming up fast, this friday, please continue to keep her in your prayers.

And for our friends and those who are still battling we pray for you as well.

Happy Thanksgiving
Love, Rob, Jen, Hanna and Sarah

Sunday, November 20, 2005 9:30 AM CST

Day +90

WOW !!!! I can't even begin to tell you what a wonderful time we had. The Dream Factory and Give Kids the World Village made us feel like royalty the entire trip. Hanna and Sarah were able to do so many things and Rob and I broke into tears of joy so often that it became a joke. But let me try and give a few of the highlights.

Sun. morning at 8:15am a limo drove into Todds Station and got the attention of all our neighbors, who all came out to say goodbye. We were driven to the airport where we were greeted by 2 volunteers from Dream Factory and given a package for Hanna and spending money. We hopped on the plane and the girls were escorted to the cockpit to meet the pilots, they even got their own wings and pictures taken with them. When we landed in Florida we were greeted by a Give Kids the World volunteer and taken to our rental car. After this the girls finally slept in the car while we drove to the Village. Once at the village we were given a package for each of the girls and one for Rob and I. Rob sat through orientation while I took the girls around to see everything, let me tell you this place is amazing. Anything and everything a child could want is in this village, a movie theatre, a train station, arcade, ice cream shop, carousel, fishing lake, play area, and 2 pools. But since we were not staying at the village it was off to our hotel. By 5:30 we were hanging out with Mimi and Poppy on the beach in front of our hotel room. And Hanna's favorite part, you could see Cinderella's Castle from our room !!! The rest of the night was dinner and to bed early for Magic Kingdom the next day.

MON. - The morning started with breakfast with Mickey, Pluto, Lilo and Sarah's favorite, Stitch. They did a hula dance around the restaurant with them all and Mickey gave them their own marracas to keep. We spent the rest of the day in Magic Kingdom, I was so impressed that Hanna lasted so long. She was given a pin that allowed all 6 of us to go to the front of any line. We had ridden everything there was to ride atleast 4 times by the time the night was over. Hanna loved every roller coaster and water ride she could get on, and Sarah was alittle upset at times that she was to small to ride. But she loved Dumbo and the Flying Carpets, and I highly suggest Mickey's Philmagic. The girls got to meet Jasmine and Aladdin, Wendy and Peter, and Ariel. We ended the night with the light parade and fireworks at Cinderella's Castle.

TUES.- We gave the girls a break and spent the morning and early afternoon swimming at the hotel and taking naps, but by 4pm we were in MGM just in time for the parade. We watched Beauty and the Beast live on stage and the girls got to meet Belle and Prince Vincent backstage after the show. Hanna was so shy she just looked like she was in awe. I asked her later if something was wrong and she said " no they are just so beautiful ". We saw the Ariel show and rode one ride and it was off to Mickey's Fantasmic Show, which Rob and I highly recommend. It was amazing, the girls mouths didn't close the whole show.

WED.- We had been given 3 days at Disney World, 2 at Universal and 1 at Seaworld. But after looking at the Universal brochure we decided that we would rather spend an extra day at Disney. So off to Animal Kingdom we went. The girls had a ball and got to meet more characters, Hanna's autograph book was filled by the time we left. The favorite ride here was The Rapids ride, Hanna rode it twice with Rob while the rest of us watched the Tarzan Rocks show. Then talked me into it and best of all Sarah could ride, the first time down Sarah was soaked. Hanna was already drenched and both were ready to go again. Three times later we all needed new clothes. We headed out of the park around 3pm to take naps and get dressed for the Hoop Da Do Dinner Show that Mimi and Poppy had booked. We had so much fun and laughed until our belly's hurt, and since the next day was Hanna's birthday one of the dancers came over and spotlighted Hanna with a birthday song.

THURS.- Hanna's birthday !!!!! Started with breakfast at the village and a cake then off to Epcot to have lunch with the princesses. Ariel, Belle, Mary Poppins, Jasmine, and Cinderella were all there to meet and greet while we ate. Then Hanna took the boys (Rob and Poppy) off to Space Mountain, Soarin and the Test Track ride. All really fast rides, do you see a theme here ? Mimi, Sarah and I did alittle shopping and then we all headed over to Magic Kingdom to finish the rides we missed. The hotel had given her a birthday pin to wear along with the Give Kids the World pin so she recieved a phone call from Goofy singing Happy Birthday before we left epcot. When we got to Magic Kingdom Hanna ( with variuos people ) rode the Runaway Train ride 6 times before we talked her into doing something Sarah could do. So off to Mickey's Toontown we went where her and Sarah rode Goofy's Barnstormer roller coaster 7 times in a row. And played ring around the rosy with Mickey ( although he didn't fall down ). We watched the fireworks and headed out of the Magic Kingdom for our last time ( this trip). It was an amazing day for all of us, but for Hanna I think she was overwhelmed at all the attention she recieved and all the exciting things she saw and did. Not a bad way to spend a birthday, no matter what age.

FRI.- We packed into the rental van and headed to Seaworld to meet our friends the McMann's. The first stop of the day was the Dolphin pool where once again the girls recieved special treatment. We were taken to a reserved area of the pool and Hanna was given fish to feed the dolphins and a trainer came over to make sure they didn't mistake the girls fingers for food. They had the best time feeding and petting the dolphins. After a day of the Dolpin show, the Shamu show, another water ride ( rode 3 times) and a few more rides the McMann's followed us back to our hotel for the fireworks show at Magic Kingdom. You could see it from our hotel patio. But Rob had other plans and got us into dinner with Cinderella, Prince Charming, Perla, Suzy ( the mice) and Fairy Godmother. After dinner we headed back just in time to see the fireworks show from our room. A perfect ending to a perfect trip. But the funs not over yet.

SAT.- After breakfast the girls and Rob went swimming while I packed,and Mimi and Poppy headed off to Epcot after saying goodbye. First stop was the Village to check out and get our 'going away' package, then to the airport, and we landed in Louisville at 4pm. Once again a volunteer greeted us with a Welcome Home Hanna sign and gift, then escorted us to our waiting limo to be taken back home. Where we spent the night eating wings and watching all the video we took on our fabulous trip.

For all our caringbridge families who have not done this yet, you need to. It will lift your spirits and take away your worries like nothing else could. Only Disney could make life seem so magical. Thank you to everyone for thinking of us this week and wishing us a wonderful trip. As Hanna would say, A Dream is a Wish Your Heart Makes. Many happy dreams !!!

Love, Rob, Jen, Hanna and Sarah

Saturday, November 12, 2005 12:45 AM CST

Day +82

Well it's almost 2pm here and the girls and I are packed, Rob always waits until the last minute, the house is decorated for Hanna's party and the cake is in the oven. Can you tell we are alittle excited !!!!!! Hanna came into our room this morning and held up one finger, one more day until Disney. Sarah rolled over in her half awake state and asked " Are we going to Disney now", when we said no tommorrow she replied " Oh man". I don't think any of us will be able to sleep tonight, good thing we are having Hanna's party so they are atleast wore out.

This is such an amazing thing that The Dream Factory of Louisville is doing for us, but for Rob and I it holds alot of meaning. At times we thought that this trip would be to much to wish for, and that it may never happen. After having to cancel because of Hanna's relapse we have been so afraid to get our hopes up to high, what if she got a cold, fever, bad xray. We worry about everything and still wake up atleast a few times throughout the night to listen to her breathe. I don't know when or even if we will ever be able to not worry, but this trip is such a blessing to all of us. Even Sarah deserves this,not many 2 year olds spend 6 weeks away from her parents and come back happy and smiling. Thank God for my parents for that.

Well I could go on and on about how blessed we feel to have so many who love and care about us. But the cake is going to beep and if I let her birthday cake burn I would never hear the end of it. We will try and give an update while we are in Disney.

We love all of you, Thank you for all you do for us.
Rob, Jen, Hanna and Sarah

Wednesday, November 2, 2005 6:17 PM CST

Day +72

We waitied all day for the news and finally at 4:30 Donna, Oncology nurse, came through for us. Hanna's xray was ALL CLEAR !!!!!! In her words " Time to do the party dance ", and we did it right in the middle of the gyms pool. We were so stressed last night and today, we knew in our heads that if something was wrong they would have called right away. Unfortunately we've been in that position before. But our hearts were aching to know what the results were, I didn't know if I really wanted to know but knew I had to know. It's a very fine line we walk and at times like this the edge seems way to close.
Thank you all for keeping Hanna in your prayers.

And even more great news is that Hanna got to go swimming for the first time in months tonight, she is determined to learn how to swim in the next 2 weeks. She's not doing to bad either.

Our next clinic appt. isn't until Nov. 22, after Disney. So we have some time off to relish in a clean xray and enjoy ourselves without worries. Thank God for that.

Love, Rob, Jen, Hanna and Sarah

Tuesday, November 1, 2005 5:19 PM CST

Day +71

Today was clinic day and things went well. Hanna is continuing to gain weight so they have taken her down to once a day for a week and then all done on her megase, appetite stimulant. One more med. down three more to go. They needed a routine urine test and an xray, the xray I was not prepared for. Dr. Cheerva assured me that Hanna sounded great and in her own words she said " Let the people who really have something to worry about worry". Never the less Rob and I are alittle on edge tonight, we should know something no later than thurs., so please continue to keep Hanna in your prayers. She trully is doing great and even though her energy level isn't what it once was she is getting there. And with her line out she was given permission to go swimming, so we are going to Rob's gym tommorrow night.

I hope everyone had a good Halloween, the girls had a ball and ended up with a ton of candy. I'll post a picture of them later.
Thank you for your prayers and love.
Rob, Jen, Hanna and Sarah

Friday, October 28, 2005 11:56 AM CDT

Day +67

Surgery #12 is over, let's hope and pray that it is her last !!!!!!! Hanna was scheduled for 9:30 this morning so we had to be there by 8am. When I went in to wake her up she hopped right out of bed and said let's go, even Sarah got up and said today sissy gets her line out hurray. She was taken back at 10:30 (alittle late) and Dr. Nagaraj came out to talk to us by 10:50. While in recovery Hanna's favorite person, Mrs. Alicia the child life specialist, came by to see how she was doing and chat for awhile. It put a smile on Hanna's face. So it's 1pm here and the girls are settled on the couch with 'green girl' ( Rob's army blanket ), cartoons and Spaghetti Factory. Everyone from the surgery nurses to the Dr. said they never wanted to see us again, we whole heartedly agree. It's hard to think of this as the end of our journey, we are not having any big parties like we had planned the first time around. We are going to go to Disney in 2 weeks and have a blast, come back and start phsyching ourselves up for her scan on Dec. 2. I can't say that we will ever feel like this is over, we forever will fear scan days and live for normal days. But the normal days are so wonderful, even when the girls are fighting I have to smile because I can so clearly remember the bad days. God Bless you all for you love and support and continued prayers.

LOve, Rob, Jen, Hanna and Sarah

Wednesday, October 26, 2005 10:11 AM CDT

Day +65

It's so hard to believe that we are 65 days out from transplant. I went through last night and read alittle of the journal and I have to say that God does give you strength that you would never imagine you were capable of. Things continue to go well for Hanna, she is fiesty as ever and having no trouble letting Rob and I know that she knows more than she should. Example, we wanted her to take a bath last night and her answer was ' no we just changed my dressing and I'm not ready to have it fall off', point made. But she got a bath anyway.

The weather cleared up sat. and her and Sarah begged us to go to the zoo for trick or treating so off we went with Mimi,Poppy and Uncle Mike. We saw Tinker Bell ( Sarah's favorite ) and they got to make a wish with 'fairy dust'. In the car I asked Hanna what her wish was and she said 'you know mom, that my cancer never comes back again.' We wish that every second of every day.

So on to the BIG news..... Line removal is scheduled for this Friday, HURRAY !!!!!!!! We have to call tommorrow for the time but she is so excited, when I told her she jumped up and down and said 'yes I can swim ' Guess we know what she missed the most this past year.

Thank you for all your continued support and prayers, even though things are going well we have no illusions that they could change in an instant. That's why we try so hard to make every day a day that she will go to bed smiling about.
Love, Rob, Jen, Hanna and Sarah

Friday, October 21, 2005 8:28 AM CDT

Day +60

We got the call around 3pm yesterday that Hanna's pre-albumin level had passed the 20 mark and she was free from TPN/Lipids !!!!! We were so excited, then an hour later we got the call that they were scheduling her line removal and would call us by mon. with a date. Let's just say our day was WONDERFUL !! After waiting 51 days for her to be off TPN/Lipids it couldn't have been better news.

Today however Hanna's allergies are kicking in and she is stuffy and her eyes are red. We were going to do the zoo tonight but I think we will save it for another time.

Just wanted to give a quick update and let everyone know the good news. Have a great weekend.

LOve, Rob, Jen, Hanna and Sarah

Wednesday, October 19, 2005 7:18 AM CDT

Day +58

Well we got good news and not so good news from the Dr.'s yesterday. The not so good news is that Hanna's pre-albumins, nutrient level, was not high enough to stop her TPN/Lipids. They need to be 20 or higher and she was at 17.8 last week, of course the blood test for this takes a couple of days to get back so we could be off by the weekend. The good news is that we are every 2 week patients now, HURRAY. Our next appointment is Nov. 1, this is a big step for her. It means that she is making WBC (6.4), and platelets (155) with no problems, which we knew but it's still great. Her ANC right now is 5000, highest it's been in months.

Rob and I are still alittle concerned about the fact that she seems to be coughing and sneezing more. It's not a deep cough, like before, and we are sure it is because of allergies. Her activity level is amazing and she has stopped taking naps for the most part so we have to pray that all is well as it seems and that we are just anxious parents. But of course we get anxious over every little thing. We pray for the days when a cough or a sneeze were just that, because now they could be so much more. I know that all of our caringbridge families know how this feels.

On a lighter note, we have a busy week coming up. Mimi and Poppy are coming in tomorrow to have party night with the girls while Rob and I go to a concert with our friends. Then Fri. hopefully the weather will cooperate so that we can go to the Zoo for trick or treating and Sun. is Walk for the Cure. Also please don't forget that this weekend is the car wash fundraiser for Kosair Charities, they have helped us so much by picking up all our hospital bills for the past year. It will be held at the car wash behind Wendy's in Middletown right off the Gene Snyder. Thank you for your support.

Ok I have gone on long enough, Thank you as always for your love and prayers we are so grateful. I have learned that when things are going well we don't write as often, but the second something isn't going well we come to you for your strength and prayers. Thank you for always being here for that.
LOve, Rob, Jen, Hanna and Sarah

Sunday, October 16, 2005 7:08 PM CDT

Day +55

What a week we have had. Hanna had school with Mrs. North on thurs. and was suppose to have Mrs. Judy over on Fri., but I forgot and we went shopping instead. SHHHHH!!!! We needed supplies for Sat. nights pumpkin carving party, the kids had a ball. Lots of pumpkins, candy and food. Of course the dad's seemed to have more fun carving than the kids did. Today was spent playing with friends and having dinner at the Staples. Hanna started her own 'club' with her two friends Mary Caitlyn and Tori a few weeks ago and is itching to have 'Hanna's Power Hour' again, now that Tori is back in town and hopefully Mary Caitlyn is feeling better this week she will get her chance. Mimi will be coming in on Thurs. to watch the girls while our crew goes to the Rascal Flats concert and Fri. we are taking the girls to the Louisville Zoo for Halloween Fest. We go every year and the girls love it, Hanna is being a ballerina princess ( go figure ) and Sarah is a Hula Dancer.

On a medical note she has been doing great, she is only asking for belly meds once a day now and is sleeping through the night. She has decided that when she gets her line out she will move back into her room. We go to clinic on Tues. at 2:30 and hopefully they will stop the TPN/Lipids, she has gained another few lbs. over the week. We've started calling her chubby cheeks, but she knows that it's a good thing.

It's amazing that we go from all the fear and drama of a stem cell transplant to having a everyday life. But boy are we glad for it. Thank you for your thoughts and prayers, we praise God for all he has done for us however we will always be concerned with Hanna's every move.
LOve, Rob, Jen, Hanna and Sarah

Tuesday, October 11, 2005 4:09 PM CDT

Day +50

The half way point, today's clinic visit went as expected. Labs, Dr. Soni and home, can't beat that. Monica and Dr. Soni agree that we should stay on the TPN/Lipids for one more week to keep her nutrition up while she works her way up to a good eating point. It's really just to make sure things are going well because she gained 2 lbs. in a week, she's starting to be like mommy !!!!

The big question was how soon after we stop TPN/Lipids can we get her line out. The answer was after her first scans which are scheduled for Dec. 2, but after alittle begging we talked them into taking them out sometime before Disney (Nov. 13). Dr. Soni wanted to make sure that we understood that if something came back we MAY have to have it put back in. Our response was we will cross that bridge when we get to it, if something comes back we have bigger problems than having a line put in.

Rob and I watch her every move like a hawk, she is so sick of it. We don't even have to ask how she is feeling anymore she just says "I'm fine". We so want to live in the glory that she is in remission, but until a scan no one is sure. And after having a relapse so quickly we would love to have a scan every month, but every 3 months is the protocol and we know the signs alittle better than before and she is showing none of them.

Thank you for your love and prayers. I am going to post a picture and see if it comes out the right size, if not I will have Rob update tonight.
Love, Rob, Jen, Hanna and Sarah

Friday, October 7, 2005 3:24 PM CDT

Day +46

Hanna is doing so well I am almost scared to write and jinks it. The 8 hour TPN/Lipids along with the Megace have made a big difference in her eating. Last night she had salmon, couscous and carrots and asked for seconds, I thought our teeth would fall out!! She is still getting Zofran for her belly but it seems to bother her at night more than during the day ( probably because she is so busy playing ). All in all we can't complain, she is doing so much better than we ever expected that I trully believe she should have a big 'S' on her chest.

Hanna also started school this past Tues., Mrs. North is very nice and Hanna is learning words left and right. Mrs. North comes on Tues. and Thurs. and then our friend Mrs. Judy comes on Fri. to help, she's a retired teacher. Other than that things have been relatively calm around here, the girls have been playing outside alot but a few of their friends are sick so we have had to stop having friends over. We also found out today that she will be granted her wish to go to Disney on her birthday, Nov. 17. The Give the Kids the World Village is booked until the beginning of next year so we will stay at one of the resorts, but we will still get all the perks of staying at the Village, i.e. ice cream anytime of the day, and the pools. That's what Hanna wanted to make sure of.

Thank you all for keeping up with us and we want to let everyone who lives nearby know about our friend Dana. Dana and her family are having a car wash for Kosairs Oct. 22 - Oct. 29 at the car wash behind Wendy's in Middletown, if you need a car wash please visit.

Love, Rob, Jen, Hanna and Sarah

Tuesday, October 4, 2005 3:15 PM CDT

Day +43

Sorry that we haven't written in awhile, life has returned to our normal 'crazy' state. The girls are back to playing non-stop and having the occasional fight. Mimi and Poppy came in Fri. and helped hang drywall and plant flowers over the weekend. And Aunt Kate and Uncle Randy came by on Sun. after being in Danville,Ky. for a wedding on Sat.. Hanna has been having fun riding her bike and playing with her friends. She is still not eating, but we have heard her belly growl a number of times.

Clinic today went well, her ANC is at 1900 and her platelets are at 90, both are still lower than normal but are good for her. We are still on restriction until her 100 day point, NOV. 30, not that we're counting !! Dr. Cheerva changed her TPN/Lipids to 8 hours instead of 12 and has started her on Megase, an appetite stimulant, in hopes of getting her to eat more. The goal is to have her off the TPN/Lipids by the end of the month.

We have also been busy creating a table for her playroom. Our friend Judy donated a child's table to us that was from her church and we have painted it the colors of the room and decopaged pieces from all the cards that Hanna has recieved throughout the year and a half on the top. It looks great, I have never decopaged before and it was alot of fun learning with Hanna. Of course she said she already knew how to do it, and she did. So if you have ever sent her a card there's a good chance that a piece of it has ended up on Hanna's table, so thank you for suppling us with so many cards to add.

Thank you for your continued thoughts and prayers, we cherish these days when things seem normal. We know what the bad days are like and we never want to be there again.

Love, Rob, Jen, Hanna and Sarah

Tuesday, September 27, 2005 7:24 PM CDT

Day +36

Today's clinic visit went great, Hanna's ANC is 2200 and her platelets are at 43. They were in the low 30's when we left Nashville so they are starting to produce on their own. So no transfusions again today, and she even asked for Cheez Its. She ate one which surprised me, and she is drinking about 8 oz. of sweet tea or water. All in all things are great. Everyone at clinic thought she looked great and Dr. Soni was happy with how well she is doing.

Well other than clinic it's been a pretty quiet day, and it's been very nice. Rob starts work back tomorrow, I know he's enjoyed being with us so much and I think it will be wierd not having him with us all day. We have become our own little universe together, this whole thing has made us so much stronger.

Thank you for your continued prayers and messages.
Love, Rob, Jen, Hanna and Sarah

Monday, September 26, 2005 9:19 AM CDT

Day 35

What a wonderful weekend we have all had. Hanna continues to have belly issues and is still not eating more than a couple of bites of anything, but atleast we are home and with our friends and family.

Hanna got right back into party mode after we arrived home, our crew all came over to welcome us home and Hanna got to play with all the kids, outside of course. Things did die down early for us as she needed to rest and be hooked up to her TPN/Lipids. But she was right back at it Sat. night as the guys gathered to watch UL football, the girls hung out with the kids outside. Hanna even went rolling down the grass hill at The Staples, of course I had my eyes covered the whole time. We are still so nervous for her. She came in, took her bath at 8pm got her 'food' and watched TV with me, Sarah was still partying, until bedtime. But the best by far was last night when half the neighborhood showed up at our house to have a butterfly release in honor of Hanna. Evidently Hanna's butterfly dream inspired our friends Anne and Judy to find a way to make it come true, and did they ever. Each child had a butterfly in a paper that read .. Welcome Home Hanna Here's to a new life.. along with the Indian Legend that Anne read for us, 36 butterflies in all. It was a very special moment for all of us and it was amazing to have so many families from the neighborhood to share it with. Have we mentioned how much we LOVE living here.

So after all the excitement of the weekend we are laying low today and starting the task of unpacking all the toys we have recieved. I mentioned that Santa might have to skip our house this year because we have no more room for toys. Hanna's reply was " That's fine as long as we have snow that I can play in ", but I am sure Santa will come anyway.
Hanna's appt. at clinic is at 2:30 tomorrow, we will see if she needs a transfusion and decide on a scan date. Also o over what our Dr.'s here feel like we should do for her to keep her safe and healthy.

LOve, Rob, Jen, Hanna and Sarah

Friday, September 23, 2005 7:48 PM CDT

Day 33

PRAISE GOD WE ARE HOME !!!!!!!!!!!!

I am writing from the comfort of Hanna's room, with Sarah snuggled up on the window box, Rob watching Army football ( and their winning), and Hanna snuggled in her own bed in our room. What more could a person ask for !!!

Hanna's appt. at 11am this morning lasted until around 1:30 Nashville time, mostly paperwork and saying bye to everyone. Her platelets and ANC have gone up since Wed. and she even drank 1/4 of a smoothie yesterday and about 6 cheerios for breakfast this morning. But you should have seen her eyes when Dr. Frangoul said that has soon as she started to eat they would take her line out, it is sinking in that this just might be done. Please God let it be done !! We have an appt. with our Oncology group Tues. and we will discuss when her next scans should be done and what follow up treatment will consist of. Dr. Frangoul knows me far to well, he asked if I thought I could wait 2 months for her next scan, of course the answer was no. But as long as she is getting healthier and healthier I'll do what I'm told.

We have to thank everyone for being there with us through this journey, we know that Hanna holds a special place in all your hearts. And I trully hope that you can each take away something from this experience that will help you in your lives. Hanna has taught me so much about the human heart and what it is capable of that I long to shout it to the world, and maybe one day I will, but for now I will cradle my babies close to my heart and thank God every second that he gave them to me. We have to say a special thank you to our WONDERFUL neighbors ( family ). Who have done everything from cutting our grass and planting new flowers to buying groceries for us to come home too, God blessed us with each of you. And for 'The Porch Posse' you are my saving grace, even when I couldn't call I knew you were their for me and I pulled from your strength more than you will ever know.

All our love,
Rob, Jen, Hanna and Sarah

Thursday, September 22, 2005 6:41 PM CDT

Today was a clinic and hospital free day, we did not have any appointments and basically kept to ourselves all day, although we (Jenn and I) started the day very early. Jenn's brother, John, was nice enough to call us at 5:05 am while he was sitting in traffic outside of Houston, trying to escape from the hurricane warnings. We are glad to report that he is well away from the coast and actually made pretty good time driving after about 10 this morning. Hanna had a good day, we played around the hotel and she actually got a little rowdy with her sister in their attempts to get Jenn wet. After planning to throw her mom into a pool for about 30 minutes, Hanna finally succeeded and we had a very wet Jenn (fully clothed - she forgot her bathing suit). We all got a few chuckles out of it and Jenn got to cool off in the 90 degree weather we are having in Nashville. Hanna slept great last night and she even ate about 1/3 of a cup of jello (it is a start).
Tomorrow is the big day, with a check-up in the morning at 11 am that will determine if we get to return to Louisville. We are rapidly approaching 7 weeks away from our home and the neighbors that we consider family, so we are extremely anxious to get home (not to mention sleeping in our own beds). Hanna and Sarah are both asking when we will get to go home, the novelty of the hotel has 100% worn out on them and us. Hanna continues to be without any kind of fever and we have not had a transfusion in exactly one week, all signs indicate that her body is doing its thing again without too much help. We are frustrated by her lack of appetite, but everyone assures us that it will return with time and patience. If ya'll don't mind, give us all a little prayer at around 11 am. First for Hanna's continued progress and a long life cancer free, then for our family's sanity (mostly kidding) in allowing us to go home!!

Love,
Rob, Jenn, Hanna, and Sarah

Thursday, September 22, 2005 9:06 AM CDT

Hanna is still doing great and has even eaten 1 cheerio so far. Seems very small but it's a BIG deal to her, and us.

I am writing to ask everyone to pray for my brother, John. He is a teacher in Houston,TX and has been trying to leave since midnight last night. He called at 5am this morning and said that it has taken him 4 hours to go 15 miles. I am very worried about my baby brother, we have no family in the area and he is relying on his friends and their family for help. He has a cell phone but we have't been able to get through since he called this morning. We are hopeful that he can get out of the area and to someplace safe before he either runs out of gas, or runs out of cell phone battery. We know that he has a while before the storm hits, I am just worried about human nature under stressful circumstances. He has 24 bottles of water and 2 extra tanks of gas filled, so we are sure that he will be fine. He is traveling with his neighbor and his family, wife and 14 month old child. Please pray for him and all the people to have level heads and patience beyond reason. We just want to know that he is safe.

Thank you, Love
Rob, Jen, Hanna and Sarah

Wednesday, September 21, 2005 3:07 PM CDT

Day +30

Things continue to go well for Hanna. She had her clinic appt. again today and her ANC has dropped abit ( 11,000 on mon.- 970 today ), but Cassie says that this is normal and that it will bounce around for awhile. Her platelets and red blood cells have held their own since last wed., which means no transfusions. Cassie also talked to Dr. Frangoul today ( he is flying back from a conference ) and was told that we will be released from here this Fri.. So our appt. at clinic is at 11 am and after that we are heading HOME !!!!!!!! I cannot tell you how excited we are, even Sarah has started asking if we get to go home.
Hanna will have a checkup every week until day +100 ( Nov. 30 ), we just have to see if we need to come here or if we can do it at our clinic in Lou.. Rob and I are under the impression that we can have them done in Lou., which obviously would be easier. But as long as we get home we don't care where they are.
Thank you all for checking in and all the prayers, they are working, Hanna looks and feels better every day.
Love, Rob, Jen, Hanna and Sarah

Tuesday, September 20, 2005 6:51 PM CDT

We are still in Nashville, which is not at all bad, but we would really like to get home!! Hanna is enjoying life outside of the hospital and is gaining confidence in herself again quickly. She is beginning to drink again, maybe a glass or two of sweet tea a day, but we are still not eating. For now the TPN and lipids she is getting through her lines are keeping her nurished, she has not lost ay weight since we left the hospital. We will see Dr. Frangoul tomorrow and learn a little more about what he has planned for Hanna in the near future. We hope to go home this weekend, but are expecting to stay through most of next week. She has asked for very little pain medicine and also fewer doses of naseau medicine in the last few days. Her stomach does seem to be improving. Our visit with Grandpa over the weekend was very good. The girls got a chance to spend a lot of time with him and it was a lot of fun. I can't believe how good his timing was with showing up two days after Hanna left the hospital and the day after Sarah returned. It was great for all of us to see him, thank you for making the drive Dad (Grandpa)! We continue to try to keep things quiet for Hanna around the hotel room, but with sarah here that is next to impossible (she has brought more life back into Hanna than anyone else, but I guess little sisters have a way of doing that to you). Dr. Frangoul has encouraged us to take Hanna outside in areas without a lot of people, which was very unexpected, so we already have two favorite parks in Nashville. We apologize that the updates are less frequent now, but we do not have very good access to a computer. Thank you for everything again and again.

Love,
Rob, Jenn, Hanna, and Sarah

Saturday, September 17, 2005 9:16 PM CDT

Thank you all for your messages, we are so grateful to all of you. Well what can I say, we are enjoying being out in the real world. Wed. night and Thurs. were very hard and emotional for Hanna. And things weren't any better Thurs. night, it took until late yesterday and last night for her to realize that she was well enough to be out of the hospital. It's very hard for her to understand that things are getting better, we have to remind her of all the progress she has made. But we have to say that having Sarah here as helped alot, although she wears Hanna out quickly she still makes her smile.
Hanna had clinic Fri. morning and things were great, even her platelets have started to produce on their own. So we needed no transfusions and left the clinic in no time.
Mimi and Poppy brought Sarah here yesterday morning and stayed until around 6pm. Rob and I were able to go out for lunch together for the first time in a month. And we all hung out at the hotel pool and watched dad and Sarah swim, after Mimi and Poppy left we took the girls to the 'Dinosaur Park' to play for about 30 minutes. Hanna did great, alittle unsure of herself but she played anyway, of course Sarah didn't want to leave. But we came back and settled down and Hanna slept better than she had in days. Grandpa showed up this morning and we have had a great time with him. The girls wanted to show him the park so we hung out there for an hour and Hanna did much better today, she even ran alittle. Of course she was hurting later but we came back and took naps and things have been nice this evening.

We have another clinic appt. mon. morning and hopefully she will continue to understand that things are getting better.

Love, Rob,Jen,Hanna and Sarah

Thursday, September 15, 2005 12:02 AM CDT

Day +24

Well after 31 days in one room this is our last entry from room 6309. Although we are sooo excited to leave this room we are sad to leave all the nurses and patients that have become family to us. Maybe even closer than family, a few of them have seen us in our undies !!! The nurses and Dr.'s of 6A will always be special in our hearts and we will worship Dr. Frangoul for as long as we live. They have given us so much more than we could ever give them, a beautiful, healthy, cancer free baby. I can't believe that this moment is here, Hanna's scan that she had done while her belly was big showed no signs of cancer. We didn't even realize this until today, at the time we were worried about her belly. Funny how scan days seem different when your in the hospital worried about something else. We were also told that we could take her on her 'Wish Trip' to DisneyWorld this November, which happens to be her birthday month. We are heading to the Hampton Inn and Suites, I may even cook dinner tonight. I am not sure if there is a computer there, but as long as things check out good in the mornings we will head to Mimi and Poppy's so I will update there.

I can't tell all of you how much we love and appreciate all that you have done for us. This has been a journey that I will never wish on anyone, and for the children like Hanna who have no choice but to travel it, I am in awe. Like Hanna they have compassion beyond words, knowledge beyond their years, and most of all faith beyond boundaries. The world must hold great things for Hanna and her friends. So before I get to mushy just one thing. Smile, hug, laugh, love, play and learn with your children just because you can.

Love Always,
Rob, Jen, and Hanna

Wednesday, September 14, 2005 2:15 PM CDT

This is the second message we are posting today, so if you did not read the first one, please take a look at it by reading the old journal entries. What a great day we are having!! Not only did Dr. Frangoul announce this morning that we would be discharged from the hospital tomorrow, but we had a unbelievable surprise come to the sixth floor of the Vanderbilt Children's Hospital this afternoon. One of Hanna's favorite musical groups came by and spent the afternoon visiting with the kids here at the hospital. Hanna got a picture signed and we had a few pictures taken as proof for everyone that "Rascal Flats" came by and said hello. They are performing tonight here in Nashville and announced that all proceeds from the concert will go to the children's hospital here at Vanderbilt. What a great gift for Hanna and all the kids here at the hospital, they were really great with the kids - eager to say hello and show them that they really did care. Jenn even got in one of the pictures with the guitarist, sorry I don't know his name, but evidently he is the "good looking one". We will post the pictures as soon as we get home and have the software that we need to download off of our camera. We are expecting to stay at a hotel in Nashville for the next 10 days or so before getting to come home for good. We will visit the clinic daily for transfusions and to monitor Hanna's progress. Hanna is wearing the new pajamas from Aunt Kate today, they have the "superman" symbol all over them. Superman has nothing on this girl, we know who the real supergirl is and her name is Hanna!! Thank you again for all your love, support, and prayers.

Love,
Rob, Jenn, Hanna, and Sarah

Wednesday, September 14, 2005 10:12 AM CDT

Day +23

We are writing early this morning with a HUGE smile on our faces, we are being released from the WONDERFUL Vanderbilt Children's Hospital tomorrow !!!!! Our mouths dropped when Dr. Frangoul came in and asked Hanna if she was ready to go home, of course she is. So instead of having a lazy hospital day we will be busy packing and loading everything up. What a wonderful way to spend the day !!!!! We will have to stay in Nashville for one week so we should be rolling into Todd's Station next Friday afternoon, can you believe it !!!!!! we are soooooo excited !!!!!! We will be staying either at the Ronald McDonald House or a hotel for the week, but we get to have Sarah with us. I cannot tell you how we have prayed for this day.

On the medical side of things Hanna is still not eating but she is trying to drink so we will stay on her TPN's at home, they will run for 12 hours, so it will be a nighttime feeding. And she has 3 meds that she will have to take by mouth, but she is already taking 2 of them so she will do great. Actually she is on fewer meds than when we came in here. We have asked about how her daily life should be and to all of our surprise ( again ) he said the best place for her to be was outside. Go Figure !! We have to watch for colds, chicken pox, and mold, all of these could set her back pretty far. But other than watching what we have always watched and not going to school I think things aren't going to be that different. So much better news than we were originally given. On another good note, her belly is almost back to Hanna size, the undies that I bought her to wear when she was bigger are now falling off of her. She looks SO beautiful !!!!

I know that I always say thank you, but trully Thank You all for every prayer, thought, tear,and giggle you have shared with us. This stay was not an easy one and we are so thankful to have friends, family, and unmet friends that have helped make every day alittle easier.

Love, Rob, Jen, Hanna and Sarah
P.S. If you have sent a package don't worry the nurses said that they will take them over to clinic for us to pick up, but if you were planning on sending something please wait until we get home. Thank you for everything.

Tuesday, September 13, 2005 7:30 PM CDT

Day +22

All I can say is WOW !!! When Hanna decides that she wants to get better there is no holding her back, I don't know what we were worried about. She has been up playing most of the day with a few short naps to break up the day, and is sitting on her bed playing with a sticker book that she recieved today. And she took both her meds today with no problem, Dr. Frangoul came in and did alittle dance and said we were well on the road home, HURRAY!!!!!
We even have a tentative date of next Thurs. to be released from the hospital, we would have to go to clinic Fri. to make sure we have the TPN's down pat and that all is well but would hopefully be headed home Fri. afternoon ( pending insurance ). How exciting !!!
Rob and Hanna had a great time playing today and Rob even made a bead magnet of 'Go ARMY', guess we know where Hanna gets her craftiness from. I on the other hand spent the day with Sarah, we had a great time and even though this is hard on her also she seems to understand in her own way. She told me that even though I can't see her she knows when sissy gets better we'll come get her. What a smart little girl, even if I do say so myself.
Thank you all for your support and gifts. Hanna recieved 5 boxes full of presents today, I heard that all the nurses were amazed at her.
Love, Rob, Jen, Hanna and Sarah

Monday, September 12, 2005 8:26 PM CDT

Day +21

Jenn and I think that Hanna went all out yesterday and spent most of today trying to recover. She took a couple of walks and was awake to chat and watch some cartoons, but not quite as active as yesterday. It was still a dramatic improvement over last week. She decided to take a bite of Jello and a sip of Apple juice tonight, this is the first real food to pass her lips in over 20 days (can you imagine). The thought of food brings back memories of stomach problems, so we have agreed to take it very slow with her and the start of eating again. Hanna's eyes are definitely starting to look more normal, not so much swelling and the blood around her eyes has cleared. She has smiled for us and the nurses today and we think that she is starting to realize that things are getting better. Dr. Frangoul took her off of one of her medicines today (Flagil) and wants to keep reducing the number of drugs by one a day through-out the week. He also had her morphine dose reduced today, which did not seem to affect her because she never asked for any pain medicine all day long. He also switched one of her medicines that we will continue on for the next few months to an oral medication. This took her about 7 hours to swallow because of the small amounts we gave her at a time, but it all went down and never came back up - the progress may sound small, but it is actually very big!! Dr. Frangoul let us know that we are looking at another week in the hospital and then either follow-up in Nashville or possibly at Kosairs in Louisville if the insurance company will agree to it. That would be nice, none of us have seen our home in 30 days - I swear I am going to kiss the ground when we arrive back at 276 Grand Central Drive!!! Thank you again for everything that all of you continue to do for us.

Love,
Rob, Jenn, Hanna, and Sarah

Sunday, September 11, 2005 6:34 PM CDT

Day +20

Ok so today has been our day +14, Hanna has been up and playing ALL day !!!!! What a wonderful surprise we got today when she said that she was feeling 'much' better and wanted to get up and play. So we painted and colored and watched movies and took many walks, it was so good to have her laugh and joke again. She decided she needed a nap around 4 and woke up when dad showed up with dinner at 6, after sleeping for a week straight I guess she really didn't need a long nap. And now dad is putting together the telescope that he bought off ebay and when night falls we are going out to the deck to look at the stars. What a FANTASTIC day, if only Sarah was with us it would be complete.

On the medical side of things, her tummy is still swollen but she is in less pain and it hasn't gotten any bigger over the weekend. She has held off any fevers since Thurs. so we are down to 3 antibiotics, and today they changed her 'steak and couscous' to 16 hours a day instead of 24. She is still on her belly meds. and the morphine pump, but she hasn't needed any extra pushes on the pump all day. And she has produced platelets on her own for the last two days so we have had no platelet or blood transfusions since Thurs.

What more could we ask for. Thank you for all your love and prayers for us and all the kids who are fighting this battle. And of course for all the fun things everyone has sent, they helped keep us busy today.
Love, Rob, Jen, Hanna and Sarah

Saturday, September 10, 2005 7:22 PM CDT

Day +19

Well today was a very quiet day here, Dr. Frangoul came in this morning and said that there had been no change in her belly so how did we feel about waiting another day and giving the new meds time to work instead of surgery. We agreed to the new meds to Hanna's frustration, she really just wants them to pump her belly. He did give her permission to go outside on the playground in hopes that it would lift her spirits. She went but I think it just made her more sad, it was kinda hot and she got dizzy after just a few minutes, and it reminded her that she couldn't play easily. So for the rest of the day she has been asleep, I'm not sure if it's more from depression or pain. She gets up to go to the bathroom but then right back to bed, even her friend Ellie couldn't get her to play. I don't know what to do, she just keeps saying she wants to go home, we all do.
Thank you all for your support and prayers, Hanna doesn't listen to them much these days but it sure helps Rob and I.
Love, Rob, Jen, Hanna and Sarah

Friday, September 9, 2005 5:42 PM CDT

Day +18

Today brought more challenges for Hanna, she slept very well last night but was awaken at 3 am for blood and platelet transfusions. When we discovered that her belly had swollen back up and that she was not able to lay on her back without being in pain. This morning after Dr. Frangoul left we were sure that we were headed back in to drain the fluid. But after a dose a Lasix and another look this afternoon we are going to try a few other drugs that are suppose to pull the fluid from her abdomen and into her urine. If this doesn't help her pain by tomorrow late morning then we are already on the schedule to have her belly drained again. Rob and I were concerned that we would go into the weekend without a plan on how to help her with her pain, like last weekend. But once again Dr. Frangoul has taken care of all the options and is coming in tomorrow to check her out hisself, have we said how much we LOVE this man !!! So we'll see what tonight brings, please pray for her comfort to increase and pain to decrease. She is thinking that this is how things will always be, and we don't want her to think that.

Also please add all the children who are fighting this awful battle. We know our friends at Kosair are staying tough and the friends we have made here are all trying so hard for a 'normal' life. Hanna's friend Serrel is awaiting her 2nd transplant in 2 weeks, and fighting off infection with no white blood cells. Ellie is back with a fever after chemo a week and a half ago, and the teenage girl that Hanna met our first night here is also back with a fever. And Brooke, our first transplant friend had her full body scan today to make sure she was still cancer free. And Chloe is enjoying a cancer free life for the first time in years. All these wonderful children who are so amazing in their strength and courage that I feel honored to know them.

Please keep them all in your prayers.
Love, Rob, Jen, Hanna and Sarah

Thursday, September 8, 2005 4:44 PM CDT

Day +17

Today has been a good day here in room 6309. Hanna slept well last night until around 1am, then it was up every hour. Rob and I have a theory on these nightless sleeps, Hanna seems to sleep well the first part of the night but she gets her 'belly cocktail' at midnight. This 'cocktail' consists of Benadryl, Zofran and one other med, we are under the impression that the meds together make her restless so she doesn't sleep as deep and is more susceptible to the nightmares during this time. By 7am she is back in a deep sleep until around 1pm, after getting the 'cocktail' again. Of course this is just us trying to figure out what is making her not sleep, not the opinion of any Dr. ( although we haven't mentioned it to the Dr. yet ).

Anyway, she had her ultrasound this morning and as we were told yesterday things are working as they should be. Her liver is fine and all veins are flowing in the right direction. The conclusion to this is that the swelling is being caused by fluid from her gut healing and the only thing to do is wait for her body to absorb the fluid or take it out as necessary for her comfort. So even though this as been a very rough few days we are glad to know an answer and that it involves everything being in working order.

She even walked to the playroom today to sort through stickers again ( I think she has picked them all ), and had me read a few chapters from 'The Lion, The Witch, and the Wardrobe'. We sent daddy out this afternoon to see a movie and return a few clothes that I bought on my afternoon out last week. So we are doing much better today than past days, thank you all for your prayers and love through all of this.

Love, Rob, Jen, Hanna and Sarah

Wednesday, September 7, 2005 8:04 PM CDT

Day +16

Today has been a much better day for Hanna. She is still uncomfortable but not in as much pain, which we are so thankful for. Dr. Frangoul came in this morning and said that the tests that they ran on her fliud showed no signs of infection, HURRAY!! Yet they still did not know where it was coming from, the thought was that it was from her liver. It seems the CT scan showed that her liver was larger than normal and wasn't a solid 'cover', it had a few rough spots. This is thought to have been caused by her radiation last year. A ultrasound was done and confirmed that all her 'plumbing' was working correctly, although they couldn't get clear pictures because the fluid has started to return. She will have another ultrasound in the morning on a different machine and from that they will decide if a pictail should be inserted into her tummy to drain the fluid until her belly heals or if we just let it clear itself out. We are just so happy that their was no infection, Hanna also had her first 'real' bowel movement today. Let me tell you we all jumped for joy, because it meant that whatever is wrong isn't obstructing anything. So tommorrow will bring more answers to why this is happening, and hopefully a solution to the problem. On another good note, her fever hasn't gone above 100. all day, last night she hit 101.9 but it came down by itself. If she can stay at a normal temp. for 24 hours Dr. Frangoul will start taking away the antibiotics one at a time, Rob and I feel like this would be a huge help because she is still getting about 6 different ones. Although we aren't Dr.'s !!!!
As for Sarah, she is fine. Mimi and Poppy brought her up tonight on their way home from Lou. and we had a good time watching Ariel and hanging out. She can always make us smile.
Thank you for all the prayers for Hanna right now, we know that if we can get this problem fixed she will be well on her way to getting out of here. Her mouth and throat have healed and she really wants to start drinking but because of her stomach can't, last night after the procedure she needed Tylenol and for the first time in weeks she didn't throw it or the water she took with it back up. We were happy about that as well, it's the small things that turn us on these days.
Love, Rob, Jen, Hanna and Sarah

Tuesday, September 6, 2005 5:08 PM CDT

Day +15

For those of you who read our earlier message and started praying, Thank you. Hanna had her procedure at 3:30 in a room right on the floor. They used an ultrasound machine to find an open spot in her abdomen and inserted a tube to drain the fluid from her belly, it took about :35 minutes to drain a liter of fluid. She looks better already and is sleeping so much better. They are continuing to monitor her because as Dr. Frangoul put it 'they just put on a bandaid, not fix the problem'. Among the problems could be just the level of protein in her blood being to high and 'seeping' into her abdomen, an infection (either fungal or viral), or a few others that Rob nor I understand right now. On a positive note the Dr. who did the procedure felt that it was the protein and could be adjusted in her TPN's, but lots of tests will still be run tonight and we should have the prelimenary report very soon.
Rob and I were very worried today, this morning before her scan the thought was that either her colon had ripped and bowel fluid was leaking out or that the fluid was in her gut and she would need an NG tube ( the tube that goes into her nose and into her belly ) to pump it out. Thankfully neither of these were the case, because a problem in her gut could be very severe.
So now we wait, wait to see if her belly swells again, wait and see what the tests results say, and wait and see how she feels. We are just thankful that Dr. Frangoul took control this morning and made our baby more comfortable. I swear she looked like she was 8 months pregnant.
We also had an issue with Sarah at the same time that all of Hanna's problems were going on. Fri. when Sarah was here Rob felt a knot behind her ear, after her last cyst scare and Hanna's history we don't take changes with anything so Mimi and Poppy took her to our pediatrician. Dr. Canby felt sure that the knot was just another cyst but sent them straight to a ear,nose and throat Dr. at Baptist East to make sure. Thankfully he agreed and Sarah was given a good bill of health, we can not tell you how scared we were waiting for Hanna's procedure and Mimi's phone call. Now more than ever we just want our family back again, it hurts to have my heart torn into two seperate parts (Hanna and Sarah).
For now all is well and we will relax in that alittle, Rob and I realized we haven't eaten at all today so we are going to try and get something down. Thank you all for your support and prayers and to my mom and dad, we don't know what we would do without them.
Love, Rob, Jen, Hanna and Sarah

Tuesday, September 6, 2005 1:11 PM CDT

We need everyone to do some serious praying for Hanna. This morning, after a weekend of watching her belly swell, she had a CT scan that identified a tremendous amount of fluid in her abdominal area. The doctors do not know what it is or where it is coming from. She is going to have some of the fluid extracted from her stomach in just a little bit of time to determine what it is and how best to deal with it. Please, we need your prayers.

Love,
Rob, Jenn, and Hanna

Monday, September 5, 2005 9:03 PM CDT

Day +14

Things continue for Hanna with a painful stomach and a desire to feel better. She spent the better part of the morning asleep, but woke up to painful cramps. For anyone that knows Hanna's normal shape around her waist, just picture it twice (or as Jenn says 4 times)as large. It is very obvious to everyone why she is in such pain, but unfortunately the doctors know this to be a normal side effect of the high dose chemotherapy. We tried giving her an anti-cramping drug but she could not swallow it and it can only be given in pill form.
We are glad to hear that Mimi, Poppy and Sarah are at our house (someone should be), and enjoying all our friends. Rob and I are very tired tonight and have a feeling that it is going to be a long one. Thanks again for your continued prayers.
Love, Rob, Jen and Hanna

Sunday, September 4, 2005 6:53 PM CDT

Day +13

Today has been a quiet one here in room 6309, and we are very thankful for that. Hanna continues to need lots of rest, Rob and I were concerned this morning about her level of stomach pain and lack of urine output. We asked the Dr.'s to take a look and after a belly xray they decided that the swelling had nothing to do with her organs, all looked great, but with the inflammation from her gut trying to heal. With this they upped her Morphine after decreasing it yesterday so that she would be in less pain, the effect is that she sleeps alot. Which is better for her since she is in pain. Fevers also still seem to be an issue, she hit 103.6 last night but came down a few hours later after Tylenol. This morning it spiked at 102.9 and went down again after Tylenol and has stayed down all day, HURRAY !! Our nurse just said that she will be getting platelets again, we have come to take this as part of her regimen.
The good news is that yesterday was her last dose of Neupogen (white blood cell stimulant) and she produced neutrophils on her own. Dr. Frangoul told us at the beginning of this that by day +14 we would see a change for the better, so let's see what tommorrow will bring.
Rob and I thank you all for your continued love and prayers. After 3 weeks in a hospital room with little privacy ( even though our nurses are wonderful )and away from Sarah and watching Hanna go through hell, we are desperate to get her better and be a family again.
Love, Rob, Jen and Hanna

Saturday, September 3, 2005 5:05 PM CDT

Day +12

Last night was another night of sporadic sleep for all of us. It seemed that Hanna's bladder would only work in very small amounts, but it decided to work very frequently in those very small amounts. It frustrated all of us, especially Hanna. She is still running a small fever every once in a while, but it is not bothering the doctors at all and does not seem to bother her. This morning, at around 9 a.m., something wonderful happened - Hanna slept for a little over 4 hours straight. She followed a brief wake-up to go to the bathroom with another two hours of sleep. It seems to me that Hanna's body is really trying to play catch-up with everything else that is going into her right now. After she woke up, she and I talked for a little while and played with her new Leapster for just a little bit, until she decided that one of her toenails was too long. She proceeded to tell me to get her the fingernail clippers and she clipped all of her toenails by herself, that was a good thing because I don't know if my big fingers would clip her little toes very well. We joked with nurse Jane for a little while and received some more platelets. Platelets are always the last things for Hanna's body to reproduce on its own, so we have had atleast one transfusion, sometimes two, per day for the last week. Some of the swelling in Hanna's face and eyes has decreased and I think she knows it because I got more smiles and giggles from her today than I have heard in over a week. Hanna did tell me to say hello to Mary Caitlin, Seth, and Tory and to tell them that she is looking forward to seeing them again soon. We hope that everyone has a nice long weekend and we would really encourage everyone to send whatever help they can to help relieve some of the pain going on in Louisiana, Mississippi, and Alabama. Jenn, Hanna, and I are donating $150.00 to the red cross. We figure that we know what hard times are, but we are fortunate enough to have a job, good friends, and a home that we will return to after these hard times end. Thank you for everyone's continued love and support,

Love,
Rob, Jenn, Hanna, and Sarah

Friday, September 2, 2005 7:46 PM CDT

Day +11

Dr. Frangoul used the word 'Home' for the first time today, and Hanna almost lept off the bed. Although it was used VERY loosely it was nice to hear. They have stopped her nuepogen ( ANC is 3200 ), and the antifungal drug, they have also started to taper her off the morphine and zofran, even though she is still in need of these two drugs for pain and nausea. She is getting a 'cocktail' of nausea drugs but it doesn't seem to be helping much, she is still struggling with an upset tummy and sensitive bowels. But mostly she is struggling with the fear of what she has gone through. Rob and I were told up front that this would not be pretty and boy was everyone right, it just never seemed to be real until now.

The highlight of today was Sarah, Mimi and Poppy. And Hanna walking to the playroom twice, although the second time she made us take her pillow and blanket and would have preferred a wheelchair to get her there. Hanna let Sarah open the presents she had recieved today, but wouldn't let her take anything home HAHA, still sisters !!! But Sarah made out just fine on her own.

Thank you to everyone for all the presents, Stephanie you went overboard but Hanna loves it and has already played a few games. And Alicia thank you for thinking of her on your vacation. It's so overwhelming all the presents she recieves, the nurses have started to call her "The most loved little girl in the world", Thank you all so much. Dad offered to take a few things home for us next week, but Hanna spoke up and said "no, one day I'll feel like playing". Hopefully that one day will be soon.

Love, Rob, Jen and Hanna

Thursday, September 1, 2005 7:08 PM CDT

Day +10

Hanna's cells have engraffed and seem to be right at home, her ANC is at 1700, which is great. The threat of any organ failure has now passed and she just needs to heal, mentally and physically. She has not thrown up in 24 hours but is still scared that she will. Who can blame her after what she saw come from her body, but we still have to convince her that there is nothing left to come up. We all had a very long night last night, mostly because just when she falls into a deep sleep she starts to have nightmares and wakes up screaming that she needs to throw up. We knew this would be an issue and have talked to Dr. Frangoul about it, and he has changed her meds and added another anti-nausea med in hopes of helping her belly and in turn helping her mind. Today was still rough and we had to be alittle forcefull about her hanging over the bucket for hours, however after the second dose of her new meds she got up without yelling and went to the bathroom without asking for the bucket. Big progress for us, we also got her to leave the room for a short walk, although she huffed and puffed the whole way.
All in all we seem to be crossing small bridges everyday and we are very thankful for that. Please continue to keep her in your prayers and also the people devastated by Hurricane Katrina.
Love, Rob, Jen and Hanna

Wednesday, August 31, 2005 3:42 PM CDT

Day +9

Things continue to improve, Hanna's ANC went from 70 yesterday to 400 today. So her body is working overtime right now, which is making her very tired. The mucousitis has also lessened in the last 24 hours, she is still feeling like she needs to throw up but nothing is coming up. Now it's just trying to heal the damage that was done to her gut. She has also been taken off of vacomyacin (antibiotic) and they are considering taking her off of a few others tomorrow. She has also been able to keep her fever down for more than 24 hours without Tylenol. AMEN !!

On the downside is that she is still hurting pretty bad and continues to use the Morphine and Zofran continually, her skin has started to peel in the body folds, and she is retaining alittle fluid so it looks like she has been punched in the face. Dr. Frangoul came in this morning and said that he was happy with the way her cells were producing but that we still had a long way to go in fixing the damage to her body, which will take another 2-3 weeks. He did say that we were through the worst of it and that any kidney failure would have happened already.

Although I continue to wait for someone to wave that magic wand and tell me she is 'cured', Dr. Frangoul did say that we definately did the right thing by having this transplant and that no matter how things turned out we have done what we should have. It's not the magic wand but it helps to know that the Dr. thinks we did the right thing by her, even though it's awful to watch.

Thank you all for the gifts, Hanna has the picture of 'the gang' hanging by her bed so she can always see her friends. Thank you to the Jonas family, Dee, and the clinic nurses in Louisville, it's good to know we're not forgotten there. And to everyone who continues to pray for us, Thank you.
Love, Rob, Jen and Hanna

Tuesday, August 30, 2005 7:26 PM CDT

Day +8

Last night was better than the one before it and today has been a little better than yesterday. We met with Dr. Frangoul this morning and he continues to be happy with the progress that Hanna is making. She continues to have about 16 different medications flowing into her to handle naseau, antibiotics, an antifungal, her nutrition and a few other important things. We think all of the fluids going into her are causing her to bloat a little. Jenn won't like me saying this, but right now Hanna looks like she was hit by a professional boxer (in reality she has been hit by much worse). Enough of the bad, we have some good news to report. The sign on Hanna's front door (the one that says "white blood cells enter here") must be working. She went from 200 yesterday to 300 today and Dr. Frangoul indicated that the level of Monocytes in her blood count from today should take her to around 800 tomorrow. Without getting into too much detail, this should get her ANC count up around 200-250 tomorrow. One of the criteria for leaving the hospital is having an ANC of over 500 (very possible by the end of the week). The other criteria have to deal with organ function, and Hanna's ability to sustain herself with food. Jenn and I think we are still a couple of weeks away from meeting all of the criteria. Right now we are in no rush after the suffering that Hanna has been through in the last week, we are in the best place to receive the right care for her for the near future. We would really like to thank Joyce Buky and the ladies at Wayne Homes in Louisville for the awesome package that you sent to Hanna today. I think it produced the only smile I saw from her today. You really went a little overboard, but thank you - we really appreciate it. We continue to appreciate all the thoughts and prayers, they are working.

Love,
Rob, Jenn, Hanna, and Sarah

Monday, August 29, 2005 1:54 PM CDT

Day +7

HURRAY HURRAY, White cells are at 200 !!!

Her ANC is still 0, but we are heading in the right direction. Dr. Frangoul came in this morning and joked that he timed his weekend off right, because that has been the worst time so far. But last night was better, she managed to control her bowels most of yesterday and last night and slept for about 3 hour intervals before waking up to head to the bathroom. So we all slept better than Sat. night. She is also throwing up less mucous/blood which even though it's what everyone expects her to do it's very hard for us to see. And the best part is that after waking this morning at 9 she stayed awake until 1pm and even, get ready for this, walked to the playroom !!!!! My mouth dropped when she asked, it has definately been a better day already. She even was alittle upset last night that she missed seeing the afternoon storm in the glass room, although we promised that Hurricane Katrina would bring more soon.

For now she is resting peacefully, and has yet (knock on wood ) to throw up any. Her temp. is still hovering in the low 100's, but again Dr. Frangoul says that that is normal. It's good to hear that the Dr.'s and nurses think that she is doing so well, since she is OUR only transplant patient we have nothing to compare it too.

Thank you for all the love, support and prayers over the weekend. And Becky the image of Chris made Hanna smile, she said " Can Mr. Chris dance?", guess he'll have to show her when we get back to the corner.
Love, Rob, Jen, and Hanna

Sunday, August 28, 2005 10:59 AM CDT

Day +6

I struggle with what to say today, last night was HELL ! And that's being nice, Hanna spent the whole night throwing up blood/mucous and not being able to control her bowels. Thank God mom thought to bring pads for the bed or we would have run out of sheets. They gave her Zofran at 1am and she slept until 3am and that was it until this morning at 8 when the Dr. came in and upped her Zofran and Morphine. Her temperature is still running in the 101. to 103. range, so she will start the antifungal med today. But not before getting a chest xray and EKG. The Dr.'s came in and said that they would start a Zofran PAC, we have used this successfully at Kosair. And her temp. now is 102. so hopefully the Tylenol will kick in soon.

Please continue to pray for Hanna, her body is so weak and she is so very sad and tired. Rob and I talked about taking shifts and getting some rest in a hotel, but then came to the conclusion that we would only lay there wondering what was going on here. So lots of rest is hopefully in store for us today.

Love, Rob,Jen and Hanna

Saturday, August 27, 2005 7:40 PM CDT

Day +5

I really want to write and say that things are getting better, and hopefully soon I'll be able too. Last night was the worst yet, we were up for most of it, I have no idea of even when we made it to bed. I just know that Hanna is so weak now that she is having trouble standing and she shakes alot. She is now on 16 different meds and starting tomorrow 2 more will be added, she is very itchy, swollen and red, all of this from the drugs. But she is still beautiful to us. She is still having trouble keeping her fever down and has been around 99.9 to 101.7 all day, but her kidney function, heart rate and blood pressure are still good. And even though last night and today weren't great we feel like she is taking a turn for the better. The mucousitis seems to be slowing down, her throat still hurts and we are still doing mouth care and suction but it seems to be more broken up and less bloody than the past few days.

The highlight of today was Mimi, Poppy and SARAH !!!! Mimi and Poppy brought her up around noon and stayed until 4. Rob and I took turns taking Sarah out to the sibling playroom and the pond because Hanna didn't want her in the room to long. It was really wonderful to spend some time with her, and I thank my mom and dad so much for making the drive everytime we ask. They in turn were able to spend some time with Hanna while she was awake, but unfortunately had to witness some of the bad parts. But I know they love to see her no matter what.

Rob and I are exhausted, the long days and nights are taking their tole which makes things more emotional. But we wouldn't be anywhere else. Thank you all so much for your letters and prayers, we are taking much strength from all of you right now. Hanna is trying to sleep, but is in and out alot so I am going ot go cuddle.
Love,Rob, Jen and Hanna

Friday, August 26, 2005 8:05 PM CDT

Day +4

Today started out with alittle more promise than the past days but didn't turn into much different. After I wrote this morning she asked to go to the playroom, so off we went. While Rob went for breakfast we picked out stickers and had planned to make a sign for her door that says ' White Blood Cells Enter Here '. After Rob returned they played on the playstation and wrecked many 4 wheelers. It was good to see and hear her laugh after days without it. At noon we headed back to our room for a nap and saw Dr. Frangoul in the hall, I thought his eyes would pop out. He didn't expect to see her walking the halls, needless to say he was very pleased. Yet since then we have been in bed the rest of the day, have had to change sheets twice and jammies 3 times. She is so embarrased, we tell her not to worry about it but she still does. The vomiting has been more severe than past days and they have now given us a suction tube ( like the dentist ) to remove the mucousitis from her mouth. She still has to take her Tylenol by mouth and every time she throws up. She hasn't been able to keep her fever down without it, which has hung between 99.7 and 102. all day. A Dr. from the Antiviral Dept. came up to ask if we would enter into a clinical trial on a drug that they are testing for fungal viruses. The standard is to start a anti-fungal drug after she has had a fever for 96 hours, which would be sun.,the new drug they want us to test has less side affects than the drug they have been using for the last 45 years. Rob and I have read the paperwork and are going to let them. Dr. Frangoul says that they have been using the drug anyway because it is so effective, which makes us feel better. We have complete trust and faith in him and his staff.

I want to thank everyone who has sent things to her over the past few days, getting cards and presents in the mail still makes her smile no matter how sick she is. And of course thank you for your love and prayers, I still read her messages to her in her awake moments. Please pray that our fun last alittle longer each day and the pain alittle less.
Love, Rob, Jen and Hanna (Sarah too, we miss her so much !!)

Friday, August 26, 2005 10:13 AM CDT

Day +4

I know that I am updating early today so if you didn't get a chance to read yesterday's journal yet, just know that it sucks. Last night was another rough night, her temp. stayed around 102. for most of it, she continued to throw up and have diarhia and she recieved both blood and platelet transfusions. Not to get on a soap box but no matter where you live please, please donate blood to your local Red Cross. Children like Hanna need it desperately. Things finally slowed down around 4:30am and we all slept until 8. This morning we awoke to another fever and more vomit and diarhia but things have calmed down now, she has already had her Zofran and Tylenol, and is resting watching Disney.
The good news for the day is that she seems to have alittle more spunk in her today. I complained that the rocker in our room was to hard on my butt, she looked up and said,"well get up and get a pillow", ok !! Of course I have no room to complain about anything so I did as I was told. She also told us that every since we have gotten here, when she falls asleep she dreams that she is standing still in a field with millions of butterflies flying all around and landing on her. This of course brought tears to my eyes, and we told her that the butterflies were her angels letting her know she was going to be ok. It was wonderful to know that she isn't having nightmares.
Thank you all for your messages of love and support, you can't imagine how much we need them.
Love, Rob, Jen and Hanna

Thursday, August 25, 2005 7:12 PM CDT

Day +3

I wish I could say that things have gotten better but they haven't, they have gotten worse. Last night her platelets dropped to 15 so she had a transfusion at 3am, by 3:40 her temp. was at 103.4. She was given a mix of Benadryl/Tylonel and afer many machine beeps and cultures drawn we all finally went to bed at 6am. Things have not progressed well today either. Dr. Frangoul came in this morning and said that she was on every antibiotic in the pharmacy, oh great !! So now we are on 6 antibiotics, morphine, TPN's, Zofran, ativan, tylenol and benadryl. He also said that he doesn't expect things to get any better over the weekend but by mid-week next week she should take a turn for the better. Later this afternoon he had to be called back in because she continues to throw up blood, run high fevers and then she got the chills really bad. They gave her demerol for the chills which worked great, we cleaned her up. Let's just say that since she has no stomach lining everything goes right through without her knowing. She is still not eating, so we are on day 4 with no food, this worries Rob and I but we have been told by everyone that her TPN's are enough for her right now, and we can't imagine why she would want to eat with the way she feels.

I don't know what else to say, everything we were told would happen is happening. Now we just have to get her through it with no infections. Please continue to pray for her, it hurts so bad to see our little girl in so much pain and to not be able to fix it right away. Her white blood cells have to do that.

Love, Rob, Jen and Hanna

Wednesday, August 24, 2005 8:08 PM CDT

The warnings that Dr. Frangoul and everyone spoke to us about prior to the start of this stem cell transplant started to show themselves today. Hanna is hanging tough as usual, but she had a rough day today. Last night she began to complain about some throat pain and this morning we saw the first bumps (mucositis) in her mouth. She is not eating or drinking, but she is getting everything she needs right now through her IV drips. Hanna has a drip of morphine that she controls to help with her pain, it is making her very drowsy, but it is definitely helping with the pain. She spent about 2/3 of the day in bed and most of that time she was asleep. Jenn and I believe that we are in for more of this, probably worse, for the next week or so. Hanna's white blood cell counts bottomed out at zero this morning and her platelets are very low. This is the time when we fear most for infections, but the doctors and nurses are keeping a close eye on her. She hovered around 100 degrees all day, pretty typical for what her body is going through by what the nurses tell us. Sorry for a less than positive update, but we will gladly get through this time to get Hanna better. We would like to thank uncle Matt's mom (Sue) very much for putting a big smile on Hanna's face today with the awesome princess pillow that she sent - it was absolutely the best time she had today. Keep sending your thoughts and prayers to Hanna, they are working.

Love,
Rob, Jenn, Hanna, and Sarah

Tuesday, August 23, 2005 4:55 PM CDT

Day +1

If I hadn't been there while she was being transplanted I would have never believed that it happened. Hanna has taken this experience on as if she knew what she was doing all along, maybe she did. She was trully terrified yesterday morning and it took her a few hours to calm down after the procedure, but after she awoke from her 3 hour nap it was like a new child had taken her place. Or the old Hanna had found herself again. She got up and asked to play on the computer and played for atleast 5 hours, printing out pictures for her scrapbook. Her friend Serrel came by and they played on the computer and had dinner together. For the first time in 3 days she asked for food, and taco bell at that. She didn't eat much but she tried. Then she climbed into bed and started cutting the pictures she made to fit in her book, she stayed up until 10pm doing this. She had a chest xray before bed, we said our prayers and she slept peacefully through the night.
There is a funny story about yesterday though and those of you who know her best will greatly appreciate that our spunky girl still has it. Before the procedure her nerves got the best of her and she started to throw up, while Rob and I are holding the bucket and cleaning her mouth off she reaches under her blankets and pulls out a water gun that nurse Jane had given her. And shoots Dr. Frangoul right in the chest 3 times, everyone broke out in laughter and she just looked up and smiled. That's the Hanna we know and love !!!!
They have started her on her TPN's which are her nutrients and fat so that she won't loose weight, and she gets her nuepogen through the IV (no shots ), but she is still taking her meds by mouth and not complaining of any mouth or throat soars yet. She has said that she can't really taste things anymore, and she has a black spot (no bigger than a pen mark) on the side of her tongue. Other than that we still can't keep her down.
So what do you think the first thing she wants to do this morning is? Schoolwork, she said we were behind and needed to catch up. Must be the Evans' genes in her. We went to the glass room and spent 2 hours working on letters and numbers until she found out that the playroom was open so she headed off to see what she could find there. I cleaned up while Rob took her and they met another new friend, the two of them painted birdhouses and shared stories until she was ready for a nap at noon. She woke up at 3 and went straight out to see if Anthony ( nurse) had charged up the tractor like he had promised, he had so off she went. This trip out of our room only lasted an hour or so and she asked to go back to sleep. Which is were she is now at 5pm.

So whatever prayers you are all saying please keep them coming because GOD is listening, we have proof. Thank you for your love and support. And I hope the porch isn't vacant just because I'm not there !!!!
Love, Rob, Jen and Hanna

Monday, August 22, 2005 11:32 AM CDT

HANNA HAS NEW STEM CELLS!!!!!!!!

At about 1120 this morning the stem cell cart came in with a liquid nitrogen container and four bags of Hanna's stem cells in deep freeze. Becky and the team from the stem cell facility defrosted the cells in warm water and then transfered the cells from their bags into syringes, then they were pushed into Hanna through her central line. The worst thing that happened was that Hanna threw up a little bit and her blood pressure went up (mostly from anxiety). Jenn and I held her hands and tried to keep her calm, afterward she told us that it was not that bad at all. They left the room at around 1140 (total of 20 minutes)with Hanna's stem cell's put back where they needed to be (in her)to start the healing process. All of us were waiting for something difficult to happen and were utterly disappointed (thank God!!), once again the amazing Hanna came through with flying colors. She is now trying to sleep because she is tired and also because they gave her a large dose of benadryl prior to the stem cells to prevent any allergic reactions from happening. Thank you to Mimi and Poppy for being here with us and of course to the staff of wonderful nurses and doctors here at Vanderbilt that make this as easy as possible. Thank you to Dr. Cheerva and everyone back at Kosair and the clinic for getting us ready for this and sending us to the next best place for Hanna and our family, and of course to everyone (around the world it seems like) for all the thoughts and prayers. We have some hard times still ahead of us while Hanna's body feels the effects of the chemotherapy and the impact of her new stem cells, but it will get better and so will she. The picture above was taken this morning just before Hanna got her stem cells back.

Love,
Rob, jenn, hanna, and Sarah

Sunday, August 21, 2005 9:08 PM CDT

Day -1

This is it. It's alittle after 9pm and our day is winding down. Hanna had a fair day today, she slept through the night without any complications and slept until almost 10. She held breakfast down but not lunch ( which consisted of popcorn and coke), not the best lunch option. She slept a bit during the day but nothing over the top, we played Polly's in the tub, did our laps in the hall and colored pictures for Sarah. The best part of the day just happened though. Our wonderful nurse Tami let us take Hanna outside to see the stars,so we went to the outside play area on our floor and swang on the swing and counted the stars. There were 3, one for each of us !!! Sorry Sarah. Hanna is very scared and very homesick, she has an idea of what tomorrow will consist of and I think in her mind it is already worse than it will really be. Although I am probably wrong, I think it's going to suck out loud !!!

Most of you will probably read this in the morning so I ask that you please pray for us at 10:30 tomorrow morning ( 11:30 eastern). We know that Hanna is always in your prayers and we appreciate it so much, just give Hanna an extra shout out if you could. Mimi and Poppy are coming up as well, I don't think they can be in the room but Mimi just needs to be close. I for one am glad they will be here, I think I'm going to need my mommy too.

Well this is it, the moment we've prayed and worried over for the last 5 months. I have no words to explain the feelings going on inside Rob and I. Just prayers, lots and lots of prayers.
Thank you all,
Love, Rob, Jen and Hanna

Saturday, August 20, 2005 7:24 PM CDT

Day -2

AMEN !!!! Our nurse Jane turned off Hanna's last high dose chemo at 11 am just as Mimi, Poppy, and Sarah were coming through the door. What a great thing to be able to say she is finished with chemo, let's just keep praying that all this chemo has done the job it was meant to do. However, the bad part is that the days we were concerned about have arrived. She has thrown up only once a day and usually at night since Thurs., but today has been rough. She has thrown up numerous times today and has eaten nothing in almost twelve hours. They have upped her 'belly meds' and our night nurse is trying to get her on a constant drip of Benadryl and Ativan, I do have to agree with Rob on the fact that our nurses have been wonderful.
Rob and I tried to take alittle break and take Sarah out to lunch, but before we got our food Mimi called and said that Hanna had thrown up and needed her mommy. So we rushed back, and Hanna asked for Sarah to leave. We have spent the rest of the day either asleep and comfortable or up and nauseas.
Right now she is up and smiling and playing with daddy, the after effect of Ativan. She actually just asked to ride in the tractor. Will wonders never cease !!
Thank you for all your love and prayers, we need them now more than ever.
Rob, Jen and Hanna

Saturday, August 20, 2005 9:06 AM CDT

Day -2

We are on our last day of chemo, hopefully FOREVER !! Hanna will get a push of Melphalan this afternoon and then she'll have sunday off. Dr Frangoul said that the transplant will take place around 10:30 Monday morning. What can I say about our little girl, she is so amazing to me. Her attitude and strength continue to uplift us all.

Yesterday went well, she slept until 4:30pm off and on, but then got Ativan at 5 for an upset belly. This makes her alittle silly so we got up and did our 'laps' around the hall and hung out in the glass room for awhile. Dad showed up with dinner, we ate in the glass room and watched the sunset. Hanna said that besides the IV pole it was like being in a fancy restaurant.
In her limited time awake she did meet a new friend, they tried to do crafts together but Hanna was to tired. The little girl had lunch with us and then went back to her room. There is a cute story with this though, the little girls mom had to leave and she was here alone for awhile. Hanna found this out and got worried, she woke up and asked if Serel's mommy had come back yet, she hadn't. So Hanna decided that we should ask her to spend the night in our room so she wouldn't be scared without her mom. I tried to tell her that I was sure that her mommy would be back soon, but Hanna wouldn't listen we had to go down to Serel's room, and there was Serel's mom. We went back to our room but not before Hanna told our nurse that if Serel's mom left that she could come stay with us. That's our girl, always worried about other people even when she isn't feeling so good. I was very proud of her.
Mimi,Poppy and Sarah are on there way to see us today and we are all excited. Two days without Sarah is long enough. And Hanna wants them to see her newly decorated room, everyone has done a great job sending things, Thank you. It took her all of ten minutes to direct daddy on where to hang the princess stickers that Melissa and Kathy sent. So now we have princesses, butterflies, flower lights, balloons and lots of pictures, plus a Strawberry Shortcake blanket. It looks just like Hanna, fun and beautiful.
Thank you all for your love and support,
Rob, Jen, and Hanna

Friday, August 19, 2005 8:51 AM CDT

Day -3

Hello everyone,

Jenn finally relinquished authority to update Hanna's journal for one day and I am so happy to finally be the author for my amazing daughter's journal. First, let me assure everyone that we are getting very good treatment from everyone here at Vanderbilt. Dr. Frangoul, Becky, Cassie, and all the nurses are first class, if you have to spend a month in a single room this is not a bad place to do it. I am especially fortunate to be spending it with two of the three people I care about most (Sarah is having too good of a time with Mimi & Poppy to miss us too much). We so far have made many crafts, watched a few movies (we highly recommend "Because of Winn Dixie"), played a lot of Connect Four, done some school work, and enjoyed each other's company. I believe that Dr. Frangoul is very pleased with how Hanna is taking everything, he said she was on "auto-pilot" yesterday in reference to how she is receiving and handling the chemotherapy. When this was started there was a huge concern over how Hanna's single kidney would handle the high levels of Carboplatin over an extended dosage period, but like everything else I have learned about my daughter in the past five years she has handled it like a walk in the park. We had some stomach problems last night (threw-up), but that was the first time since we checked in on Monday. Thank you to Debbi for the pictures and postcards we just received and also to the clinic nurses back home for the awesome strawberry shortcake blanket that Hanna is already cuddling with next to me. Thank you for all of your continued love and support,

Love,
Rob, Jenn, and Hanna

Wednesday, August 17, 2005 9:26 PM CDT

Day -5

Well the sky hasn't fallen yet !! Hanna did really well again today. She is alittle more tired and her lips and skin are starting to itch, but we are being proactive on all her skin care and belly needs. She needed both meds after dinner tonight and is now sound asleep. But she had an active day. Mimi, Poppy, and Sarah came up at 11 and stayed until 2 ( when chemo starts ). We had a visit from a friend of Rob's Aunt Patsys, who lives near Nashville and wanted to check on Hanna. Then the girls painted pictures and Hanna crafted with Mimi while I played with Sarah, we all had lunch together until time to go. Hanna took her usual nap during chemo but awoke to find out that she was off restriction. And just in time because there were two girls in the hall driving a John Deere tractor, it took Hanna alittle while but she soon made friends and asked to drive. We have great pictures of it. Of course all fun ends when a dressing change is mentioned, Hanna retreated to Rob's bed for cartoons until bath and dinner. And never got her dressing change !! All in all a great day.
We have been told that she can decorate her room up so if you would like to send her anything please do. She is sending me to Target ( how awful HAHA) for a few things tomorrow, as long as she feels well. Rob signed us up for a month at the Y, but shopping sounds more fun than working out. He has gone every morning which seems to be helping with his mental state, not that he's crazy but we are both stressed. Go figure !!
Thank you for all your love and prayers,
Love, Rob, Jen and Hanna

Tuesday, August 16, 2005 6:48 PM CDT

Day -6

We thought last night would be alittle rough, but it went fine. Hanna finished her chemo at 5pm and started getting nauseas around 9. Our nurse (Carrie) gave her Benadryl but that didn't work to well and she started to dry heave so she gave her Ativan and that seemed to help. We ended up having a peaceful night, I think Rob finally slept for the first time in weeks.
Today has gone well so far also. She got up this morning had eggs, bacon and toast ( like her Poppy ) and went straight to making crafts. She made a picture frame with popsicle sticks and beaded necklaces before starting her school work again. This time with alittle more frustration, but I think she was tired. After lunch they started her chemo and she slept for 2 hours. Then woke up ready to craft again, so we made a sign up board for her room. No one gets to leave without signing out(HAHAHA), then it was Memory Game time where she beats me every time. It is now alittle after 7 and she is going off to sleep again, Rob's on his way with pizza so I hope she can hold out a little while longer. All in all a good day, we know the bad days are coming and it's like waiting for the sky to fall.
Mimi and Poppy are bringing Sarah up tomorrow, she has started to use the potty all on her own. I told her not to change while I was gone, guess she doesn't listen to me either !!!!!
Thank you all for your love and prayers,
Rob, Jen, and Hanna

Monday, August 15, 2005 4:49 PM CDT

Day -7

Well we are here in room 6309, our new home for the next month. Things started normal this morning and have continued to be so. We arrived at the Oncology Clinic by 8am, the nurse started Hanna's fluids by 8:30. By 9:30 we were in our room, but soon taken down for a chest xray to make sure her lungs were good. Hanna watched cartoons, crafted a wonderful page of all her favorite things that is hanging on her door, and even did some school work. I have to brag that she did great at writing and recieved a 100n both her pages. Of course I am the teacher for now and am under the impression she should get a 100 for everything. She had lunch and started chemo at 2pm, after Dr. Frangoul checked her blood work and xray. She fell asleep around 3:30 but not before asking for ice cream and a movie for dinner.
The Dr's and nurses tell us that the first day is pretty easy but tomorrow will probably be alittle harder on her belly. We have already started mouth care, rinsing with 2 different mouth washes every four hours. They have also already started her on 2 new antibiotics, just in case. And she has just finished her chemo for the day. It's 3 hours not 7 (thank God). She is getting 1 hour of VP16 and 2 hours of carboplatin, this is the drug that's so hard on her kidneys. She'll get this for 5 days and then get Melphalan on day -2, rest on sunday and be transplanted on Mon. The best news that we have gotten is that Sarah can visit, they have done away with the age restriction. HURRAY !!!
Before this gets to long I have to let everyone know about last night at the Opryland Hotel. We met Mimi and Poppy there for dinner and went walking around. They had a band in the main area and line dancers, it took alittle pushing(not much)but she and Sarah got up and danced. They looked beautiful. Then there was an acrobat team and a ring acrobat plus a water musical. The girls eyes were wide eyed the whole time and Sarah kept asking " How will she get down" about the ring acrobat. It was a WONDERFUL way to start our trip to Nashville. I wish you all could have seen the smiles and heard the laughter, it definately warmed our hearts.
Thank you for your continued love and support, and to The Gang back at home, we miss you and love you all so much. We hope to see you all here soon.
Love, Rob,Jen and Hanna

Saturday, August 13, 2005 10:16 AM CDT

Day 365

It's been one year since our lives changed forever. It's amazing how a split second can change your whole being, I still remember standing in the Dr.'s office when they told me I should call Rob. I was trembling and scared to death and trying desperately to hide it from Hanna. I can't say that that feeling has ever left, I just can't hide it from Hanna anymore.

We had to send Turbo away yesterday, which was very hard for all of us, ecspecially Hanna. He will be staying with a very nice lady named Judy, who helps with the Woodstock Foundation. They are the ones who gave Turbo to her in the first place. We checked on him last night and he was alittle shy and looking for his girls but she said he was fine. Hanna made us promise that the first thing we did after we got home was pick him up, and of course we will.

Her 'going away party' went very well Thurs. night, she said it was "the best party she has ever had in her WHOLE life". Which says alot since we tend to have many parties. There were 10 kids and it took them all of 10 monutes to go through 200 water balloons and an hour to split a pinata. Hanna hung in there until around 9:30 and then asked to go home.

We will head to Nashville tomorrow and check into Vanderbilt Mon. morning. They will start her fluids first and then get us set up in a room, then they will start her chemo. She will recieve 7 hours of chemo each day for 5 days then rest for 2 days and get her stem cells on Mon. the 22nd. During this period she will have a GFR (kidney function test )and heart echo everyday. After transplant she will add a few tests and still continue the others. It will be a long hard process for her, we are trying to keep it as upbeat as possible. We have purchased lots of movies and games, we are unsure as to whether she can have Barbies or Polly's. Were taking them though just incase she can.

We want to thank all of you for your continued love and support. I read Hanna her messages almost every night and she loves getting them, they make her feel so special. And Rob and I get so much strength from all your messages. Thank you does not cover how much we trully appreciate all of you for keeping us in your thoughts and prayers.
Love, Rob, Jen, Hanna and Sarah

Thursday, August 11, 2005 8:37 AM CDT

Hanna has made it through surgery #10. She went in for her line incersion this morning at 8am and we are now waiting for her to come up from recovery. She was sad to get her line back in after having so much freedom this past week, but she knew it had to be done.
She went to the Shelbyville pool yesterday with Sarah, Seth, Ella, Mary Caitlyn, Josh and Kyle. It goes without saying that she had a wonderful time. However of all the kids at the pool she is the only one who got stung by a bee. She was tough though and never cried and after about 10 minutes was ready to get back in the pool. We had so much fun this past week letting her do what she really wanted to do without worry. Of course the weight of what is coming is hanging heavy on our minds and hearts as it comes closer.
But tonight we are having a 'Going away Party', with bubbles, sidewalk chalk drawing contest, hula hoops and 200 water balloons. She is looking forward to it, although we want to make sure she has the energy for it.
Thank you all for your continued thoughts and prayers.
Love, Rob and Jen

Monday, August 8, 2005 12:50 AM CDT

Day 361

Oh what a weekwnd we had !! I will try and upload a few pictures on here, I always have trouble with it so hopefully Rob can help me.
Sat. we went to Six Flags here in Ky., the girls played in the water park the whole day, we never once rode a ride. Hanna had a ball being able to go under water and slide down the slides. We even ran into one of the ladies that works at Kosairs on 7west (our unit), the first thing she told her was " I can do this now , I have no lines ". She is so excited to be free of chemo reminders. The girls tired out around 4 so we headed home for naps and to wait for Mimi and Poppy to show up. We had dinner out at Hanna's favorite place, O'Charley's, she loves their soup. And the girls played with Mimi in the playroom the rest of the night while mommy and daddy fell asleep.
Hanna woke up Sunday morning and laid in bed smiling, when I looked over at her I asked why she was smiling so big. She said " Today I get to be a princess ", and indeed she did. The 2005 Princess Tea Party was wonderful, all the girls recieved beautiful dresses from a local children's dress shop and real tiara's. Not the plastic ones, Hanna says. When we arrived Hanna recieved a goody bag and was directed to the dressing room, there she had her nails and makeup applied and put on her dress. The parents and family were taken into the banquet room to wait for the princesses to be escorted in and given their tiara's. The girls looked so beautiful, they were suppose to come in one by one. However, Hanna and her friends had other plans. Hanna, Chloe, and Dana all walked in together holding hands. They were not letting go of one another, so they were crowned and introduced together. It was great to see these girls who have been through so much hold on to one another for support. They all were served pink lemonade in tea cups and a plate of goodies by the 2005 Ms. and Ms. Teen Hardin County. There were clowns, puppets and even Cinderella, Snow White ( who Sarah loved ), Aurora, and Minnie Mouse to sign autographs and take pictures. It was a fabulous and magical day that I know she will NEVER forget, and that wasn't even the end of it.

After the party we headed to cousin Joey's house for a cookout and small family reunion. Debbie, Maddy and Corbin were in from Bainbridge Island, Wa. and it was great to see them. Maddy is 14 and Hanna looks up to her so much, and Maddy thinks the world of Hanna so they make a great pair when they get to get together. It was a great way to end a perfect day.

Love,
Rob and Jen

Friday, August 5, 2005 9:43 PM CDT

Day 358

Hanna has been playing hard without her lines in. We got home from Mimi and Poppy's on Wed. afternoon and she and Sarah were out riding bikes and swinging until we had to drag them in. Then Thurs. we spent the day hanging out until daddy came home and she talked us into letting her go swimming in a REAL pool. Our nurse at Vandi had given us the go ahead to let her swim, she hasn't been able to really do that since last year. So we headed to Rob's gym for alittle swim, her and Sarah had a ball. The smiles were worth more than anything I could think of.
We spent most of today running errands and putting special touches on her playroom and hanging out with Ella and Seth. Hanna rode her bike around the whole neighborhood, up and down the hills and even helped Emily and Seth save a baby bunny from drowning in the neighborhood pool. She has also talked us into ( not that it's hard to do ) going to Ky. Kingdom tomorrow, so we will head to the water park for as long as they can hang. Which is probably longer than Rob and I !!!
Thank you all for your prayers,
Love Rob and Jen

Tuesday, August 2, 2005 8:32 PM CDT

HURRAY !!HURRAY !!! Finally alittle good news to share. Hanna's CTscan came back clean today. What a weight off our shoulders, after Aprils scan we were scared to death today. She also had her GFR, which we didn't get the results on, we should hear back by the end of the week. Her heart scan and hearing tests went very well also. So we are scheduled to start the transplant chemo on Mon. the 15th and she will have her new birthday on that sun.(let's hope God isn't taking a rest that day ).

Of course the Dr.'s have to give you all the bad things that could happen and with this there are many. Our main concerns are severe kidney damage, ecspecially since she only has one, and infection. There are things that we will be doing to prevent both of these. The things that we know will happen are severe mucusitis and abdomal pain with the transplant itself. Although the abdomal pain should subside after about 15 minutes after she gets her cells the mucusitis will cause her to neither eat nor drink for awhile. They are not thinking that she will need a feeding tube, but she will recieve all the calories and vitamins intravenously.

The schedule will be that Mon. will be day -7, we count down 0,which is transplant day. Then count up, starting her body out all over again, ence the new birthday. She will probably start feeling bad around day -2 or -3, and should start going back up by day +14. After this point her cells are trying to fix the damage that the chemo did. We will probably spend about 30 days in Nashville. Whether in the hospital or at Hope Lodge. We will be let out when her counts start showing that they are going up to over 1,000, but we will remain in the area for daily function and blood counts. It's all very overwhelming right now, we new this was coming but preparing ourselves to here all the bad things isn't easy. She's still our baby girl, no matter how much medical jargan we use.

Thank you all for your love and prayers today, they were much needed and much appreciated.
Love, Rob and Jen

Monday, August 1, 2005 5:42 PM CDT

Well we left Kosair's at 1 pm today, alittle later than we were hoping but we are sooo grateful to Dr. Soni for letting us go. NY had still not faxed Hanna's info to him, and they were having trouble getting them to do so. They were so worried about our daughter when we were there (haha) and now they won't send her info to our Dr.'s.

We are going to just let it go and enjoy this evening, being at home with the girls is so great. We have decided to head to Vanderbilt tomorrow morning, we will have to leave early but atleast we get to sleep in our own beds tonight. Hanna has an IV in her hand, they let us keep it so that she wouldn't have to get stuck again tomorrow. See how nice our Dr.'s are !!!

Her first test is at 8am and it is her GFR ( kidney function)then she will get her scan and blood work and a more intense heart test. They were trying to schedule her hearing test but that was the least of their concerns. We have been doing a 24hr kyroten test, meaning we have to save her pee and keep it cold until morning. But I have to tell that the first thing Hanna asked after her nap this afternoon was if we could have friends over. Nothing stops this girl from having fun. But Rob and I are so very tired and stressed that we told her we would see.

Please keep us in your thoughts and prayers tomorrow we are so afraid that the scan will come back bad, but praying and hoping that is does not.

I have to let all of you know also what an amazing job Brooke and her family did with their '18 Holes for Hope'. They ended up raising over 60 thousand dollars for the oncology unit at Kosairs, that is such a wonderful thing. They are hoping to buy new TV's and DVD players for all the rooms and new IV poles and spruce up the playroom. It will be wonderful, Rob and I can't wait to have the time and energy to fundraise for the people who have given us so much.

Thank you for all your love and prayers,
Rob and Jen

Sunday, July 31, 2005 7:43 AM CDT

We are FINALLY HOME !!!!!!!!! This trip had such good intentions and started out so well that it is dishearting the way that it ended. We arrived in York, Pa. on Tues. afternoon to see Nana and Grandpa, we had a great time. Even in the heat, no one has air conditioning and the temps. were near the 100's with the heat index. we went to Aunt Patsy's for dinner that night and the first thing the girls saw was the pool. Hanna is not allowed in pools but Sarah had gotten in and we couldn't make Hanna sit in the heat and watch her sister swim, so we let her get in just to her chest. The next day we went to the Baltimore aquarium to get a break from the heat and had a great time, Hanna got to talk to one of the dolphn trainers, she wanted to pet a dolphin but one had just had a baby and they weren't letting people around them. We had a great time anyway, that night a storm came through and cooled things off so we had breakfast said our goodbyes and headed to New York City.

We checked into our hotel, right in the middle of Times Square, and went straight to the N.Y.C. emergency room. Hanna's line had puss coming from it and was red and very tender to touch, infection. We spent 6 hours in the ER waiting for someone to decide what they were going to do, then got admitted for antibiotics over night. The next morning Rob calls the hotel and tells me that they want to take her line out and let us go home, Dr. Soni here in Louisville has agreed to that. So while I am in a taxi with Sarah trying desperately to find the hospital they are in, Hanna is taken into surgery to have her line removed. After being dropped off in a part of NY that I hope to never see again I finally made my way to the right hospital, Hanna was already in recovery. From this point things get even worse, we are told that she is ok to fly so we purchase plane tickets for the girls and I and Rob will drive the car back home alone. The only hitch is that we have to drive back to Baltimore to get the flight. Everyone is fine with this until this one Dr. decides that she will not let us leave unless we fly from NY, which is another $700. We spend ALL day fighting with this woman and miss our flight. I never knew I could speak to another human the way I spoke to this extremely unreasonable person, and that is putting things very nicely. We end up spending another night in the hospital for no reason other than this Dr.. By this point we have told her that we do not want her dealing with our child any longer and get a new Dr.. He assures us that we will be able to leave by 8am the next morning, Hanna and I left the hospital at 7:30am and we were out of NY by 8. Never to return again !!!!!!!!!!

It gets better, we sat in traffic in New Jersey for an hour and almost missed our flight by like 10 minutes. Thank God it was running alittle late. We left Baltimore at 1:10 and landed in Louisville at 2:40. HURRAY !!!!! Dr. Soni, God love this man, told us to go home take showers and show up at Kosairs before 5. So that brings us to where we are today, in Kosairs with an IV in her hand but no fluids, she is eating and drinking fine. The hope is that Dr. Soni will let us leave this afternoon after he sees her and gets the cultures from NY faxed to him.

Needless to say we spent ALOT of money in NYC and have nothing to show for it. Hanna got to see the closed Toys'R'Us and Disney Store as we drove past it at 8 in the morning. Although she didn't care she just wanted to get out of there. Anyway our trip started out with everyone having a good time and ended up with the girls and I flying home and poor Rob driving 10 hours alone. We will not be taking a trip that far away again for a very long time, even if Hanna wan't going to go through transplant.

But we are home and going to get passed our nightmare trip and concentrate on what comes next, the testing and scans on Tues. Then we will hopefully be done with hospitals for a week before we head to transplant.

Love, Rob and Jen

Monday, July 25, 2005 12:05 AM CDT

Day 347

Things went great this morning at clinic so we are on our way to York, Pa. this afternoon and to New York City on Thurs., Hanna is so excited. Her counts jumped from 0 last wed. to 3400 today, the neupogen shots that she gets sure do the job. Autumn, one of the nurses at clinic, said she was going to go no matter what. Rob and I were hoping she would be over 1000, that was our cutoff, but once again Hanna kicked it in and surpassed what we thought she would do. The nurses have contacted a few "friends" in N.Y. and have gotten something special worked out for Hanna at the big Toys 'R' Us store and the NBC Experience, we aren't sure what to expect yet. But knowing these ladies I am sure Hanna will LOVE it.

We will probably be away from a computer for the next week, but please keep us in your thoughts and prayers. We do know that Hanna has 4 tests scheduled at Vanderbilt on Tues. Aug. 2nd. One of them is a CT scan, which is really the big one for us. If anything shows up then we have to change course and possible no stem cell transplant. We are holding our breathes on this one but will enjoy the next week as if all is well. Because for now it is !!!!

Love, Rob and Jen

Saturday, July 23, 2005 9:11 AM CDT

Day 345

What we thought would happen on Mon. happened on Wed. instead, Hanna's counts dropped to 0. Which meant no more playing outside or with friends, and she hates that. So we decided it was a good time to paint the new playroom and that cheered her up. So imagine a room with each wall painted a different color and the colors being pink, purple, orange, teal, and the beams on the ceiling hot pink. Let's just say it is NOT a dull room !!!! But it actually does look great, Rob laid the hardwood for the ballet area and it is all starting to come together. If we could only decide on carpet, Hanna is begging for green, we'll see.

So while this has kept her busy for the last few days we have been trying to keep her germ free and had one scare when we thought she would have to go back in. Thurs. after we left the hospital from her platelet transfusion she started a headache that would come and go. By that night she was in tears so we called the Dr. on call and he said that it was probably from her chemo and her counts being low, so we settled her down for the night and gave Tylenol and be morning she was better. She is back at the hospital this morning with Rob for a blood transfusion that should take about 4 hours and then back to clinic on Mon. to get counts. We are hoping that her counts are going up now because we are planning a trip to York, Pa. next week before transplant. We are excited to see all the Pa. family, and needing a distraction so that the coming week doesn't weigh to heavy on our minds.

We are very nervous about the next step and pray that God will be by her side. We know that we are in your prayers, please keep them coming. This next step will be the hardest part of it all and it HAS to work.

Love, Rob and Jen

Monday, July 18, 2005 5:35 PM CDT

Day 340

Hanna has done great since we left the hospital wed. afternoon., Thurs. she helped Mimi prime the playroom and slept alot, Fri. she finished helping Mimi and slept alittle less. She let Rob and I go to a neighbors house for cards on the promise of a new scooter, so Sat. She reminded Rob a million times and he took her, but they couldn't find the one she wanted, so she settled with a movie and went again on Sun. and " found the most perfect Barbie scooter she had ever seen ". So although it has been raining alot here she has been out on her new scooter as much as possible. It's great to watch her just be a 5 year old.

We had clinic today and her counts were good so guess what- she got to take all her friends to the pottery place to paint pots, the ice cream shop and then home and run in the sprinkler. Needless to say she is sound asleep right now. But has requested pork chops with gravy, shells and cheese macaroni and baked apples for dinner- looks like moms cooking tonight !!!! She has so much spunk, I wish you all could know her and that energy that she puts out. Rob and I try to live everyday to the fullest when we can and that includes dropping everything and doing what they want. It is usually more fun than what we are doing anyway. So even though laundry sat and the toys didn't get put away, I got to watch my wonderful girls play and laugh. That is worth so much more to us than anything we could do or buy.

Another fun thing is that Hanna has been invited to the 2005 Kentucky Princess Tea Party. It's funded by the Princess foundation that was founded after alittle girl, Victoria Mattingly, lost her battle with cancer. If you want to check her website it is www.princessfoundation.org.
The girls get their own princess gowns,a tiara and a gift, and crowned princess for a day. Hanna is so excited, she can't wait to get the tiara. It is the first Sun. in Aug. so even if we are in Nashville for the week we will drive back home for this.

Well as you can tell all news is good news today. Thank you for sharing in her joy and laughter with us, it trully makes the hard times alittle better.
LOve, Rob and Jen

Tuesday, July 12, 2005 6:58 PM CDT

Hanna spent the day painting and painting and painting !!! Elizabeth, the child life director, gave her a job of painting pictures to be submitted to the National Childhood Cancer Foundation for their yearly calender. And she takes her jobs seriously, she has painted three large stock papers and is now working on a medium canvas.
She has done really well with this round of chemo, she has had to have Benadryl twice for upset tummy, but that's it. Well besides her constent zofran drip. She is getting a 48 hour Doxorubicine drip that should be done by about 1pm tomorrow and we will be going home.
We talked to the Dr. Ahuja today and we are all under the impression that we will head to Vandi the beginning of Aug. for all her testing and start the transplant chemo the 2nd week in Aug., this could change we haven't heard from Vandi. but that is the course that Kosair would take.

Thank you for your thoughts and prayers.
Love, Jen and Rob

Monday, July 11, 2005 11:10 AM CDT

We are settled into Kosair Children's this afternoon awaiting chemo. But what a weekend we had !! Fri. Hanna went to see Herbie Fully Loaded with Mary Caitlyn, Tori, Seth, Sarah and Ella. Sat. I took Hanna and Sarah to Lowes' to pick out a light and a slide for their new playroom, and that night we hung out with friends and went for a long walk in the neighborhood. Sun. we had a baby shower for Michelle. Mary Caitlyn, Tori and Hanna helped hand out the presents, then we had pizza with the Cordrey's. Busy Busy Busy !!!

Hanna is in great spirits and ready to do our 3 day stay, she is wanting to get home for the neighborhood yard sale this sat. Like she doesn't have enough stuff !! Mimi came in yesterday and is staying with Sarah, who has already locked her out of the house.

Rob worked on the playroom all weekend and it is looking like a kids space, ecspecially with a slide in it. Simpsonville Baptist Church has offered to build and decorate her room while we are away for transplant. They had already drywalled the walls and had started on the rest of the basement. We cannot thank these people enough for their time and kindness. Hanna is soooo excited to see her finished playroom, dance studio, playground all in one.

Thank you all for your prayers and messages.
Love, Rob and Jen

Wednesday, July 6, 2005 8:40 PM CDT

We made it home Tues. afternoon and Hanna's first question was " Can we have a party tonight ", so we did. The crew gathered at our neighbors house and had pizza, good thing since we had no food in the house !! Hanna is feeling great and eating so good it's amazing, she is at 42.5 lbs., we are getting closer to that 50 mark every day.

We did get the call from the Dr's this afternoon. The next course of action is a stay at Kosair starting Mon. for a third round of chemo. They will be using different drugs this time, she has had all of them before in her earlier treatment. So we know how she reacted to them before and aren't expecting anything to drastic, of course we have been wrong before. She will have a heart echo and another GFR ( kidney function ) test tomorrow and a CT scan either Fri. or Mon.. Dr. Raj origianlly wanted us to check into the hospital on Fri., but I begged for the weekend ( seeing that we just got home ) and got it. From there we will probably have about 3 weeks in town and then head to Vanderbilt for the transplant chemo and transplant, although there is always the chance that they will want us there straight out of the hospital. But we will cross that bridge when we get there, for now we are going to enjoy this week and head back in Mon.

Thank you all for your continued notes and prayers, Hanna loves them so much.
Love, Rob and Jen

Sunday, July 3, 2005 10:21 AM CDT

We are free !!!!! Things went well on fri., it still took about 5 hours, but we finally left the hospital at 8 pm. Only to get to the hotel and find out someone had checked us out and had to wait for another room, although after everything that the people at Opryland have done for us we really didn't care. By 9:30 we were settled into the Irish Pub having drinks and listening to music, even Hanna got up and stomped her foot to a few jigs.

The harvest went really well, you only need 2 million cells to do the transplant. We got 3 on thurs. and 2 more on fri., everyone said that Dr. Frangoul is always alittle greedy with the cells if they are producing well which is fine with us. The more the better is our theory.

So now we are settled into the lake with Grandpa, Melissa, Aunt Kathy, Melissa, Trevor, Sarah, Mimi and Poppy and having a great time. Yesterday we all took long naps, Rob ecspecially, then had a huge steak dinner and went for a boat ride before Hanna called it quits. Of course Sarah stayed up with us until about midnight and was the first one up this morning - we can't hang with her !!! I have to add for Rob's poker buddies that I kicked butt last night, great bluff on 4 kings, whatever that means, he was very proud of me !!!

Thank you all very much for all your thoughts and prayers while we're away, we miss everyone so much and are looking forward to being home next week.

Love, Rob and Jen

Friday, July 1, 2005 8:41 AM CDT

we found out late last night that we didn't get the full harvest yesterday, so we'll try again today. It will probably take the same amount of time. So we are hoping to go down soon. Hanna is doing great, she is getting a blood transfusion while eating breakfast. Our little vampire !!!

This computer isn't working well so I have to make this short before it stops on me.

Love, Rob and Jen

Thursday, June 30, 2005 7:30 PM CDT

HANNA ROCKS !!!!! yesterday she had an ANC of 680 and a CD34 of 9, today she has an ANC of 9,000 and a CD34 of 80. That's our girl !!! Everything went great today, she recieved platelets by 6 am and headed to surgery at 8, then back to her room for breakfast and into the harvest by noon.The process took about 6 hours and she slept through about 4 of it. We are now waiting for the preliminary results to see if we collected enough today and can get her line out tonight or if we have to collect more tomorrow. The line is in her femular artery ( her hip bone ) so it is uncomfortable, she can't sit straight up or walk. Needless to say we are on pins and needles waiting to hear the results.

Thank you all for your prayers today, please keep them coming.
Love, Rob and Jen

Wednesday, June 29, 2005 5:46 PM CDT

Great News, Hanna's body has been working overtime an we are ready for harvest tomorrow. We were told that she has the highest CD34 cell count that they have seen in years, at this point in treatment. They drew blood this afternoon just to see what her CD34 cell was at, and it was already at .55 with a white blood count of 1.7, meaning after they do all the math she is at a CD34 of 9. It needs to be between 12-15, the way her counts jumped today they are sure that she will be ready. So after all the medical terminology the bottom line is that she will get platelets, blood drawn to check counts, one more nuepogen shot, and head into surgery to insert her new line by 8 am. After that she will be on the harvesting machine for about 4 hours. We were told that it won't hurt and that the only thing that usually happens is calcium levels drop and they give them Tums to eat. We are all hopeful that we will get enough cells on the first day so that they can remove her line on Fri., and be out of here no later than Sun.. It would be great to spend the 4th with our whole family.

Rob's dad and his wife, Melissa, are on their way in now and should be here in the next hour. We are trying to get Hanna to nap, but she hasn't seen them in so long and is very excited. She was let off of restriction last night, and can not only leave her room but is free to roam the hospital. The first thing she wanted to do when they told her that was to hit the gift shop. That's my girl !!!!! She bought a Groovy Girls watch and a purple bracelet with a butterfly on it.

We will update everyone after harvest tomorrow and let you know how she did. Please keep her in your prayers tomorrow, even though we may make this sound easy Hanna is very nervous and scared. Another new procedure, with new people. And for those of you who know her personally, you know how shy and unsure she can be.

Love, Rob and Jen

Monday, June 27, 2005 7:24 PM CDT

Today has been a great day !!!! Hanna started the day by getting platelets at 6:30 am, she slept through the whole thing and never even knew. Then we talked the nurses into letting her out so that she could see Sarah. And that made everyones day, I swear she has grown 10 inches since I saw her last wed.. The girls got to go outside in the play area and swing and pretend princess in the castle then it started to rain so we moved inside with barbies and candy. It cheered all of us, we miss Sarah's smile so much. And to top it off Uncle John flew in today so we got to hang out with him for awhile and hear all his bachelor stories, well the clean ones anyway. Hanna is all smiles now and should be good with her Sarah fix for a few days.

We were told this morning that they will increase her nuepogen tomorrow in hopes of getting her CD34 cell up this week. The CD34 cell is the stem cell, the mother of all cells. They mentioned one concern but then said that it wasn't even really a concern, but if they can't get the stem cells to overflow into the blood stream they will have to do a bone marrow harvest to get the cells from there. This is alittle more invasive since they go in with a needle into her pelvis and extract bone marrow. Sounds like such fun !!!!!!! The only reason this was brought up was because she has been radiated in her pelvic area and sometimes it's hard to get the stem cells to grow back after radiation, one of the many side affects. But we aren;t worrying about that until we have too, so for now we are happy in today and settling down for dinner and sleep.

Thank you all for you love and prayers,
Rob and Jen

Sunday, June 26, 2005 10:01 PM CDT

Things have been quiet here today, which is better than having a busy day. Rob sent me to the Opry Mills Mall this morning for some new shorts, 4 hours later I showed up with an arm load of bags. He should know never to send a woman out shopping with no rules. At any rate we are still here and Hanna is still not allowed out of her room, which is driving her crazy.
My brother John is flying in tomorrow and Mimi and Poppy are bringing Sarah up. We have talked to the nurses about letting Hanna out to visit with her, and I think we have them on our side. I hope so because she is really missing her sister, believe it or not. Mimi and Poppy have been amazing they have taken over Sarah's care and the job of having Turbo around. Ecspecially since Turbo is having some bowel issues on their carpets. SORRY !!!
Well hopefully we get the ok on her VRE test tomorrow and she gets to leave this room, otherwise she might go after someone.
Love, Rob and Jen

Saturday, June 25, 2005 6:20 PM CDT

Hanna has had a good day today considering we're still in the hospital. She has had no fever and her cultures that were taken on fri. have yet to grow anything. Meaning we are probably in the clear, but can't leave until her counts go up. Sound familiar from a few weeks ago.
When we first arrived fri. we were all nervous and unsure about the nurses and hospital. They test every new admit for a virus called VRE. They do this by doing a "poop" check, the test results take afew days to come back and Hanna is not allowed to leave the room until the results come back. Rob and I can leave but we have to gown and scrub up, and they would really perfer we didn't leave. This is very different from Kosair and caused alot of stress yesterday. But things got better when the night nurse came on, Tammy, she poked fun at Rob right away and Hanna said " she's just like Megan", one of Hanna's favorite nurses at Kosair. Then today our nurses name is Heather, another of Hanna's favs at Kosair, and she has been great. So even though we LOVE our Kosair nurses, Hanna is warming up here, which makes life for us easier.

Dr. Frangoul and Becky stopped by late yesterday to see how she was doing and Dr. Frangoul explained that he felt that a 3rd cycle would only hurt hanna's kidneys more than needed. He still wants to talk it over with Dr. Cheerva, Hanna's main Dr., but he feels like if there is a third cycle it should not include the drugs she has been given previously. This of course all depends on a number of kidney function tests that they will perform. So for now we are scheduled to start her double doses of neupogen midweek and try and harvest before the weekend. Then the decision will be made about the 3rd cycle.

I want to thank everyone for their notes, I read them to Hanna today and she loved the jokes and that Frances and Megan wrote. I miss all my "porch possy" and will definately be in need when we get home. Becky I have laughed my butt off at the books you gave me, this womans life is worse than mine, atleast I'm not being shot at !!! well hopefully Hanna's "poop" test comes back tomorrow and she will get to walk around the unit.

Love, Rob and jen

Friday, June 24, 2005 5:07 PM CDT

The 9 a.m. clinic appointment this morning has turned into a weekend (and possibly longer) admission into Vanderbilt Children's hospital. Hanna has been extremely tired today and recieved a blood transfusion to get her hemoglobin up. Her temperature has been a little over 100 all day, nothing real high, but a fever none the less. Since Hanna is all the way down here in Nashville it would be great if she could receive cards here. The address is:
Vanderbilt Children's Hospital
Room 6312A
2200 Children's Way
Nashville, TN 37232

We would like to send a special thank you to marta and everyone at the Opryland Hotel for the kindness and support that was shown to our family.
Sarah is having a good time with her Mimi and Poppy at the lake, along with Turbo. We are in the isolated portion of the oncology unit here, so Sarah will not be able to visit her sister.

Love,
Rob, jenn, Hanna, and Sarah

Thursday, June 23, 2005 11:24 AM CDT

We are still in the OPryland Hotel, Hanna went to clinic wed. and has a o ANC count so no activity for her. Because of this we sent Sarah with Mimi and Poppy yesterday. It was hard sending her she cried and cried, so did I. Everyone here has been amazing, the reservation and accounting staff have all sent things to Hanna and Sarah and have welcomed us into our temporary home with open arms. We are staying put for today,Hanna bought a pottery wheel with the money that the girls made for her and has already made a bowl this morning. She is waiting for it to dry so she can decorate it, when I left the room she was playing Barbies in her new pop up tent.
So we are still on hold and hoping for no fevers, even though we are stuck in a hotel room, it's better than a hospital room. Hanna says it's better because she has " No poles ". Meaning no IV attached to her. Please keep us in your prayers, we miss everyone so much. Last night after prayers Hanna asked if we were home could she play with her friends, when I told her no she said "well then this will do". She is so amazing. Thank you all again for your love and support, you can't imagine how much it means to us.

Love, Rob and Jen

Tuesday, June 21, 2005 12:40 AM CDT

Well we checked into the clinic at Children's around 2 pm and everything went very well. Her counts are still up (2300), and her hemoglobins and platelets are not too bad. So we checked into the hotel, took naps and went to see Madagascar. Sarah made it halfway through and decided she'd had enough, then Hanna started falling asleep so we went back to the hotel without seeing the end.
Dr. Frangoul said not to come back in until Wed. morning so today we are visiting Mimi and Poppy at the lake. The girls are having fun, but Rob and I think that a blood transfusion is in the near future. Mostly because Hanna gets tired so fast, of course she did just have 5 days of chemo. It's very hard to go from a week like we had a few weeks ago, where everything went great to having her be tired and not herself.
So we are still in a holding stage, no one has made a decision on when or if a scan or 3rd treatment cycle will be done. I think they want to see how well she does with the harvest before a decision is made. We are all under the impression that the harvest will take place sometime late next week, which is driving us crazy this week.
I have to tell everyone about two girls who live in our neighborhood who last week had a car wash and lemonade stand to raise money for Hanna. We were so surprised by this act of kindness and we just wanted them to know how thankful we are, and to everyone who has given a thought, prayer, or act for Hanna. She always says "How can everyone love me when they don't know me". I tell her it's because God made people to love children no matter what.

Love, Rob and Jen

Saturday, June 18, 2005 8:46 PM CDT

Day 310

WE ARE HOME !!!!!!! Hanna woke up this morning, smiled and said "Ok let's go home". She was amazing this chemo trip, she never stopped eating and although she gagged a few times she has yet to throw up. Which means she has lost no weight, HURRAY !!!!! The funniest part of our stay was this morning. Hanna loves to watch cooking shows ( I supppose because I can't cook ), she was watching Ciao Italiano on KET this morning when Dr. Ahuja came in and they had a 20 minute conversation on cooking. She told him of her love for couscous and grilled salmon, he thought it was hilarious that a 5 year old knew so much about food other than McD's. Needless to say I think Dr. Ahuja has a new friend.

I hope everyone enjoys Father's Day tomorrow, we are planning to stay low key. I have to unpack, wash, and repack. Although my mom is still here and she has been a huge help so I hope it won't be to stressful. The fact that we are leaving has finally sunk in, we are trying to stay upbeat for Hanna but it is weighing hard on our hearts. I didn't realize that this time would come so quickly, we are unsure of what the next few weeks hold which makes it harder to settle into this. We haven't told Hanna much, just that we are going there so that if she gets a fever we won't have to transfer hospitals while she doesn't feel good. We tried to tell her about the harvest last night and realized that she didn't really understand what we were talking about, so we will wait until it's time and try to explain. Someone should have a manuel for these types of things.

Many of you have asked for an address to send things to while we are away. I think the best thing to do will be to send it to my parents house and they will give it to us. They will have Sarah so we will be seeing them alot. Their address is : 132 Sunny Ln, Cadiz, Ky. 42211.

Love, Rob and Jen

Thursday, June 16, 2005 3:58 PM CDT

Day 308

We have been in the hospital for 3 days and as far as hospital stays go it is going well. Hanna is still eating well and playing. Her friend Mary Caitlyn came up yesterday to play for awhile and that made her day. She has slept more today than the passt 2 days but that was to be expected. Nurse Nicole got a huge smile out of her for bringing in the "belly medicine". Sarah however has a viral infection so we have to keep the two of them apart. Although I had to come home and check on her. I've been ordered to take a long shower before I come back, no problem !!!!

The plan is still to head to Vanderbilt on Mon., but we are unsure if there will be a third dose of chemo before the transplant chemo. So we will either be at Vandi for 2 weeks or a few months. We are so use to our lives being unsure that this just goes along with what our reality is.

I have a special request. Our friend Brooke who has already gone through transplant and was almost at her year mark will be in for surgery on her lung tomorrow to remove a lesion that has shown up. We pray that this isn't cancer, she has been through so much and after transplant your recovery options become slim to none. Please pray for this little girl and her family.

And of course we thank all of you for your constant love, prayers and support.
Rob and Jen

Monday, June 13, 2005 9:17 PM CDT

Day 304

Well the night is winding down and we are getting ready for another week in our Kosair home. Hanna will go in tomorrow and start her 2nd 5 day chemo round. She is going in very strong and her counts are amazing so hopefully she will have a better time than the 1st round was. Although we aren't holding our breathe, the VICE treatment she is on is very strong.

We have enjoyed this week so much, you can't know how great it is to see her run, laugh and play. Weeks like this strengthen our hope. And remind us of days before all this started.

Thank you all for your gifts, food, love and support. We are so very thankful to know that all of you pray for her daily. We will continue to fill you in on our daily doings.

LOve, Rob and Jen

Friday, June 10, 2005 7:27 PM CDT

From Hanna

i had fun with ella. i hope i have a great time at vanderbilt. thank you all for your notes.
goodbye, hanna

Friday, June 10, 2005 5:57 PM CDT

Day 301

We are having a ball !!!!! This week has been so great and it's not over yet. Krissy and Ella have been so much fun to have around. Hanna has taken us to the Build a Bear Factory, The Artist in You, and today we had to go downtown so we ate lunch at The Spaghetti Factory. We have to send Ella and Krissy home tomorrow morning, but we are hoping they come back soon. Hanna is full of energy and if she wasn't bald you would never know she was sick. It's always so good to get these days where she is full of fun.

love, rob and jen

Wednesday, June 8, 2005 6:30 PM CDT

Day 299

Things are going great here, Aunt Krissy and Ella arrived Mon. night and Hanna and Sarah are having a ball. It's great to have a little one around again,( of course it's even better that I don't have to get up and feed her !!!).

Hanna's evaluation at Vanderbilt Tues. went very well. The hospital and clinic are very nice, and the Dr's and nurses are wonderful. Dr. Frangoul and Becky Manes will be Hanna's primary transplant team. Becky is the Rn for Stem Cell Transplants and is very knowledgeable and helpful. We toured the hospital, and it is so nice. Computers in every room, playrooms and family rooms that are hepa-filtered so that Hanna will not be stuck in her room during the transplant. There is also a playroom and family room that family members can visit and play in. One room is just a huge glass room, Hanna can't wait to take her crafts in there and play all day with the sun shining. All in all it was a good visit, it will still be hard being away from home, but we knew that.

Our plans have changed alittle. Hanna will go in for her 2nd chemo round Tues. and get out Sat., from that point we will head to Vandi. They want her near by in case she gets a fever again she can come there and still be harvested when need be. So Mon. or Tues we will head to Vandi. for atleast 2 weeks, Sarah will stay at the lake and we will visit as much as possible. My parents house is about an hour and 1/2 from the hospital, so we will get Hanna's counts in the morning and as long as she can't be harvested we will go to the lake for the day. As soon as she can be harvested she will be admitted.

So needless to say we are enjoying this week as much as we can. Thank you for all your prayers and support we continue to need them.
Love, Rob and Jen

Sunday, June 5, 2005 1:31 PM CDT

Day 296

We Are Home !!!!!!!! Hanna was released yesterday afternoon with a ANC of 1138, meaning she can play all she wants. Right now she, Sarah, and Mimi are outside playing in the waterhose. It is so good to see her having fun, we had a picnic in the garage and she said it was much better than having a picnic in the hospital. Aunt Krissy arrives tomorrow night and we are so excited to meet baby Ella, Hanna is looking forward to rocking her like she use to Sarah. We will be going to Vanderbilt on Tues. for evaluation and then back to the hospital for her 2nd round of chemo on the 14th. So we are determined to have a great week this week, were planning on staying at The OpryMills Hotel Tuesday night with Krissy and Ella. And letting the girls play til they drop. Thank you all for your love and support last week, it was a hard week and we made it through it.
LOve, Rob and Jen

Friday, June 3, 2005 5:02 PM CDT

Hanna has made it through surgery #8. They said she did great and they even pulled her first tooth. The bottom front one has been loose for a week or two so they took it out for her. The toothfairy has a few gold dollars for her tonight. The word is that we will be going home tomorrow. Her counts went from 10 yesterday to 138 today, so tomorrow will be higher. We will be heading to vanderbilt tuesday just for evaluation and then hopefully home for the next week. Our next scheduled hospital stay is June 14. She just got brought up from recovery so gotta go. Thank you for all your prayers.
Love, Rob and Jen

Friday, June 3, 2005 11:57 AM CDT

Today is Friday and we may have a chance at going home later this evening. Hanna will have her broviac lines placed back into her today at around 3p.m., if all goes well the doctors will let her go home after 4-5 hours of evaluation and IV fluids running through her new lines. The last two days have been really the only time she did not have these lines since August of last year. All signs indicate that the infection which brought us in a week ago is gone thanks to the nurses, doctors, and antibiotics. Her white blood and hemoglobin counts are still low by normal standards, but they have dramatically increased since yesterday. Jenn and I want to ask everyone to consider giving blood and platelets if you can. Hanna has had 1 blood and 2 platelet transfusions since we arrived last week. There is a good chance they will give her one more of each before we leave today. Our area, Louisville, is reporting a shortage of both blood and platelet supplies. We know first hand how important these supplies are to people who desperately need healthy blood and platelets. Jenn and I both plan on giving in the next week. Hanna will most likely need further transfusions after the chemotherapy we will have in the coming weeks, please give if you can!! As of right now, Hanna and the family (including aunt Krissy and cousin Ella) will be traveling to Vanderbilt on Tuesday for her evaluation with the doctors. The stem cell harvest will be delayed until after the next round of chemotherapy. We appreciate all of the notes everyone is leaving for Hanna, keep them coming!!

Rob

Thursday, June 2, 2005 9:40 AM CDT

Hospital Day 7

Hanna is doing great without any lines. She took a long well deserved bath last night. Her hair is gone once again, but she doesn't really care. It bothers Rob and I more than her, although we are use to seeing her this way.
The new course of action is to put Hanna's Broviac line in tomorrow and come home sat/Sun. we will have to go to Vandi. for evaluation sometime next week, but the are not going to do the harvest until after her next round of chemo. Which is mid June, they want to make sure that her infection is completely gone so that they don't end up with bad stem cells and have to do it over.
we had bad news today about a new friend, The family that we have been talking to alot about the transplant had a bad scan this week. A spot showed up on their little girls lung and they are not sure if it is an infection or a relapse. Brooke has already been through transplant and was on her way to recovery so this is very sad news.
The difference between Brooke and Hanna is that Hanna relapsed before her transplant and Brooke did not. They just knew that if they didn't transplant she would.
Please add Brooke and her family to your prayers. We know relapse is scary and hope that things work out for them.
Love, Rob and Jen

Tuesday, May 31, 2005 5:45 PM CDT

So surgery #7 is done, Hanna went into surgery at 6:10, Finally. She was getting so hungry that she told the nurse if they didn't come get her she was going to eat. THat's our girl, full of fire. She is in recovery now and Rob has gone to get her food. They said she should be up in about 45 min.
THank you all for your prayers and love,
Love, Rob and Jen

Tuesday, May 31, 2005 10:38 AM CDT

We are still in the hospital, Hanna's fever has gone away but now both of her lines are infected. So she will have surgery later today to remove both her Broviac and Aforesthias line. She will have an IV for a few days to draw blood and make sure that the infection is out of her bloodstream. When they are sure of that the will reincert the aforethias (?) line so that we can still harvest her stem cells next week sometime at Vandi. This was unexpected and she is upset, she hates surgeries, but we told her that this time she'll come back with no lines and that made her smile. To bad we couldn't tell her that forever. we will let everyone know how she is doing after surgery. Please keep her in your prayers.
Love, Rob and Jen

Saturday, May 28, 2005 6:30 PM CDT

Day 287

Things are going alittle better, Hanna's fever went down this afternoon for awhile but then went back to 101.2. The cultures they took from her arm came back positive and then her lines as well, meaning that the infection is in her bloodstream not her lines. Which is actually good news, because that way we hopefuly won't have to replace any lines. That would be horrible for her, another surgery. Rob went and stayed with Sarah this morning until Mimi arrived. So now things are back to our "normal". We are not sure if we will go home tomorrow or not, her ANC count needs to be atleast 500 and we are still at 0. Aunt Krissy was suppose to visit this wed. but I think she is going to put it off until later in the week. In hopes that we can do the harvest at Vanderbilt wed/thur/fri/sat of next week. We still have to be approved but in our last denial letter a sentence stated that the transplant would be caovered at another institute.
Please keep us in your thoughts and prayers and send Hanna all the strength you can. She has some mouth sores coming in which are causing more eating problems, I have a feeling that the feeding tube is in our near future. All that and a fever are not making for a very good weekend.
Love, Rob and Jen

Friday, May 27, 2005 6:54 PM CDT

Day 287

Well we are back in the hospital, Hanna spiked a fever of 101.8 this afternoon and we rushed her in. They started antibotics and an IV for fluids, and took lots of blood. Both from her line and arm ( which she hated ). I have come home long enough to grab some clothes and a few things for her and head back. I just wanted to update everyone, Rob is staying home with Sarah tonight and coming back to the hospital in the morning. Things are crazy and I can't stop shaking, life just keeps getting better and better. Actually the Dr.'s thought that she would get a fever before this so they were expecting us when we called. It's common with this type of chemo, they bring her down so low that her body can't fight off anything. Even the smallest germ gets her, and did.
We will probably be there until Sun/Mon. and then we have a appt. at Vanderbilt with the transplant team there. They have agreed to take her with the course we have decided upon, now we have to find out if the ins. will approve the transplant at all. At any rate it's a long weekend and nothing can be decided until Tues. so right now we just take care of HAnna and break her fever and hopefully get to come home before the end of the weekend.
When I left they were typing her for a blood transfusion, her hemoglobins are at 7.5 and need to be around 11. She has had a few transfusions before so everything should be fine with that. Her feer did spike at 104.32 in the hospital and when I left it had gone to 103.2. Well I am headed back up to be with my baby, please keep us in your prayers.
Love, Rob and Jen

Friday, May 27, 2005 7:14 AM CDT

Day 287

I tried to update this last night and our computer kept failing on us, so either that's a sign that we'll have good news today or just a continued aspect of our lives. Hanna has had a rough week, tues. we started her neupogen shots and had to change her dressings for her lines. This was over an hour of torture for her and us, afterwards she was so upset she couldn't settle down and ended up going to bed without eating dinner. Wed. was better, I gave her an anxiety pill, Ativan, and she ate better and was in a much better state of mind. Of course we still had to do the shot, but we tried to make it as relaxed as possible. On to yesterday, she had a clinic apppt. to check her blood counts and update on the stem cell harvest. The blood test ( CBC ) showed that she is at 0. She has no white blood cells in her blood to fight off an infection, because of this she could get a fever and we would be back in the hospital at any time. So unfortunately no zoo or movie for awhile. She is really sad and alot of emotions are starting to show, I can't believe it has taken her this long to act out. Rob and I were doing it along time ago !!
Our other issue is that our ins. company will not pay for the transplant to happen at her hospital ( Kosair ). The hospital is not one of their centers of excellence even though it is with another plan, but they are still discussing $ figures so it doesn't count. We have been fighting with them for 2 weeks and we thought we were in yesterday, but then recieved our 3rd denial. We are still fighting and are still planning on going ahead with the harvest next week. The problem with changing hospitals isn't only that they are all atleast 2 hours from our house, or that Hanna is comfortable with her Dr.'s and nurses. The big issue is that we would have to be reavaluated and the new set of Dr.'s could change her course. That would mean that everything we have put her through over the last few weeks would be for nothing, and Rob and I are not willing to do that. It was hard enough to decide that the stem cell transplant was the way to go and now to have someone else decide that they don't approve the hospital that she has been at the whole time is ridiculous. So we may end up with a really large bill on our hands but we just want to make Hanna better.
Please keep us in your prayers, we are all very stressed and scared.
Love, Rob and Jen

Monday, May 23, 2005 3:05 PM CDT

Day 283

I added up how long we have been traveling this journey today and came up with 283 days. Way to long !!!
Hanna had a long hard day on sat., she had trouble keeping food down in the morning and then had a allergic reaction to Fenagren later that day. This caused her to act phsycotic for about an hour, it was an awful thing to see but thankfully our wonderful nurses and doctors figured out that she was allergic and gave her medicine very quickly. Everything worked out and we came home around 10:30 Sat. night. That was so great, she finally slept all night with no nightmares. Although her bed has been moved into Rob and I's bedroom so that she is less scared.
Today has been pretty normal, she has slept alot but played alot also. Eating and drinking is still an issue but we are adding supplements into everything, hoping that even if she eats alittle she'll get what she needs. If she feels up to it I told her we would go to the zoo this week or go see Madagascar, she's excited about either.
Thank you all for your love and prayers and please take joy in knowing that today has been a good day.
Love, Rob and Jen

Saturday, May 21, 2005 3:26 PM CDT

Course 1 Day 5

Well the most I can say about the last two days is that it's sucked !!!!! The chemo has kicked in and Hanna is throwing everything up. We are keeping her hydrated with the IV, but are concerned about what to do once we get back home. Her counts are still good , which is good news, but we still have to start her GCFS shots when we get home. She doesn't know about those yet, we haven't the heart to tell her she has to get a shot everyday. She is really scared and having alot of nightmares, we are hoping that being home will help with that.
The next course of action is to start the GCFS shots tomorrow, we have a clinic visit on Thurs. and will probably harvest her stem cells the Tues. or Weds. after Memorial Day. The GCFS shots help to pull the stem cells from her bone marrow which helps them to produce faster than her body would normally. That way they can get a good crossmatch of stem cells for the harvest. It all sounds very scientific, all I know is that she will hate us come next week. The one good spot in the upcoming harvest is that she will have her new line that was inserted during surgery last week taken out as soon as they have enough stem cells.
OK, BREATHE DEEP, that was given to me by a friend on a lung cancer bracelet, I use it alot !! we are hoping to go home today around 6, but if she gets a fever ( she's hanging around 99.2 ) or continues to throw up all day we will have to come back. we try to use that as a bribe to get her home, but when you have to throw up no bribe is going to work.
I have to Thank the Women of the Word for all the food this past week, it's been great to get homecooking. And the nurses have loved the leftovers. You guys are so great.
Hanna was asleep when I snuck out so I better go check on her, Rob's with her though.
Thank you all for your continued love and prayers,
Rob and Jen

Thursday, May 19, 2005 7:34 PM CDT

Course 1 Day 3

Hello Everyone,
Thank you for the messages. Hanna is sitting right here with me tonight waiting for the pizza daddy has ordered. Evidently we are having many different food cravings, we went from spaghetti O's, to mac n cheese, and now pizza.
Hanna had a rough morning, but she got to play with sarah, mimi, and poppy for alittle while before she got sick. She then spent a few hours in a drug induced sleep, and missed seeing Mary Caitlyn. But she loves the doggy and baby that you left Mary Caitlyn, Thank you.
we got out of the fish bowl room this evening and transferred to the suites. We now have our own bathroom !!!!!! The room # is 738 for those who want to visit or call. Hanna wants all to know that we have been trying on funny hats, playing Don't break the Ice and she's been kicking daddy's but at tic tac toe. But now it's time to play on Barbie.com so we will update again tomorrow.

Thank you for keeping us in your prayers,
Love, Hanna, Jen and Rob

Wednesday, May 18, 2005 10:24 PM CDT

Course 1 Day 2

Things went really well today, Hanna has been eating like crazy thanks to megase. Her GFR this morning showed that her kidney function had gone up, from 62 to 99.6, they think having her hydrated helped it out. So she recieved all her chemo drugs today without to much fan fare. She spent the day playing in the playroom with Poppy and doing crafts with Alicia, the child life specialist. Daddy came up for dinner but we made him go home to get a good nights sleep. 'Girl Night' consisted of Barbies, toe nail painting , American Idol, and we made it through half of Annie before the tireds kicked in. It was really good to see her up and playing today. We also had a few visitors to complete the day, thanks Patty, Sue and Teresa.

Mimi is bringing Sarah up in the morning , we're strarting to miss the little tanker and hopefully her counts stay up so that MAry Caitlyn can come play. It helps keep her mind off things when she has company. Well time for me to crash in my chair/bed. Thank you for all your messages and prayers. we come to the family roo everyday to read her new mesages, she thinks this is so cool. So do I.

Love, Rob and Jen

Tuesday, May 17, 2005 9:54 PM CDT

Hanna checked back into Kosair Children's Hospital today for a five day stay to do chemotherapy. The day started a little late with Hanna and Sarah having too much fun with their dolls to leave the house on time. After arriving we had a scan and got into the treatments, four different chemotherapy drugs for the day. Hanna tired out quickly around 5:30 this afternoon and has slept mostly well since she went down to sleep. A lot more to go tomorrow and for the rest of the week. Hanna really appreciates all of the notes she gets from this website, please keep them coming.

Monday, May 16, 2005 7:20 PM CDT

Hi everyone,
Hanna had her Dr.'s appointments today to make sure that we could start chemo tomorrow, and everything looked good to go. So we are on for a 5 day chemo hospital stay as of 9 am. Hanna also had an xray and GFR test today. The xray looked good, Dr. Raj ( oncologist ) thought that he saw some air pockets in her right lung. Rob was about to say " Isn't there suppose to be air in her lungs ", thank goodness he held his tongue, we had a laugh about that later. And the GFR tested her kidney function, two of her new chemo drugs, carboplatin and ifosfamide, are really hard on kidneys and since she only has one we don't want to damage it. She will have another GFR on wed. after her first dose of the carboplatin. The Dr's say that the kids can usually only handle one dose. Although the have perscribed 2 for Hanna. We'll see how she does.
We will write later in the week and let you know how she is doing. Thank you all for your prayers and support, please keep them coming.
Love, Rob, Jen, Hanna and Sarah

Friday, May 13, 2005 10:11 AM CDT

Hello everyone,

We hope that this website will help to keep everyone better informed throughtout our journey.

Hanna came home from the hospital yesterday (May 12 ), to find an American Girl doll that Grandpa had sent her. She was so excited and had the biggest smile I had seen in days. She is doing really well, even dancing to 'Out of the Box' cartoon this morning.

We have an xray and appt.'s with Dr. Nagaraj ( our surgeon ), and the Oncology Clinic on Mon.. If everyone gives the thumbs up we will be going back into the hospital on Tues. for her first 5 day chemo stay. The tentative schedule is that she will get 2/3 5 day chemo stays every 3 weeks until time for her transplant. They will harvest her stem cells 14 days after we enter the hospital. During those 14 days she will undergo numerous testing to make sure that her body and organs can withstand the chemo and transplant.

Obviously none of this sounds positive, but the good news is that Stem Cell Transplants with this type of cancer are very good. Not that I like odds, but the survival rate is around 92% for the first 2 years after transplant. With Hanna's will and courage I'll take those odds.

We will keep everyone informed as often as we can. If I do not have an email address for someone who wants this info. please pass it on to them.

Thank you for all your love, prayers, cards, and gifts. I am sorry that I do not have the time to write Thank You cards for everything but it is all appreciated and loved.

God Bless You,
Jen

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