Click the image above to return to the Hannah main page.
June 2004
06/01/2004
 Hannah will not be coming home today. She spiked a fever around 1:00 am. They've started her on a new antibiotic called Ceftaz(sp). They sent blood cultures to the lab and we're waiting to see if she grows anything. I asked them about a urine culture and they agreed that was a good idea too.

She looks so sick today. She had company from a friend that receives treatment at Glennon and she forced herself to get out of bed and walk down to the 8th floor playroom. It didn't last very long though ... she was ready to come back to her room and get in bed. Yes, she has been Megan most of the day today!

She still refuses to eat or drink anything ... she tells me she might take a drink of "soda" but NOTHING ELSE! I think I'm going to try and go home again tonight. Daddy doesn't get this kind of treatment.

I'll keep you posted.

Love, Cindi and Hannah
06/03/2004
 I found out yesterday that Hannah has an infection in her blood. Evidently the culture they took at Glennon showed something and they called the other day with the findings. Her antibiotic was changed once again and their hoping it will clear up. Dr. told us it would be at least another 48 hours before we could go home.

They've taken her off the Morphine button and she's only on Methadone and Oxycodone. It's not working nearly as well as the PCA pump but if she wants to go home she'll have to accept that this is the way it is.

Her doctor really wants her out of bed and to walk a little. It would be fantastic if she would eat or drink SOMETHING! Not only does she refuse to eat or drink but she won't get out of bed to even go to the playroom. All she wants to do is sleep.

They are testing her today for another infection called CDIF. She's had this once or twice and it is just awful! She's having severe reflux problems and she's vomiting alot. I asked them to put her on Zofran around the clock and that was no problem. They're treating her with Prevaset for the reflux and it's better but it's still a problem.

Yesterday she was taken down for an ultrasound. She was in so much pain ... my heart just broke watching her. I'm no expert in ultrasound, but Hannah's had so many of them that I can tell a little about what is what. I knew what I was seeing was unbelievable and I was frightened. There is a curtain that separates one ultrasound area from another and while we were waiting for the tech to come back from showing the doctor her findings of the ultrasound test ... I noticed her tech whispering for what seemed like 10 minutes to someone on the other side of the curtain. After I got Hannah up to go back to her room I turned around and there was Abby from Cardinal Glennon!! What a surprise!! Abby was over here doing her clinicals.

Hannah's doctor spent alot of time going over with me the findings of the ultrasound test. I thought I was going to be sick. Hannah has two very large tumors ... the main one she's always had (but much larger now) and a new one that is larger yet on the left side of her kidney. Hannah's abdomen lining is full of disease also. The doctor said she was pretty sure that half of her liver is full of disease too. She was sure the original tumor was stemming from her bladder ... it took me awhile to convince her that it was from a muscle in her side called the "pasios" (sp) muscle. Doctor said she couldn't see her pancreas due to the size of the tumor ... only a CT Scan would show this. No wonder Hannah looks like a 9 month pregnant woman. When her neufrostamy tube was put in her left kidney naturally there was blood coming out in her urine bag. It cleared up the next day and has been fine since. Two days ago, off and on, she has started having blood in her urine again. Doctors weren't sure why so I asked them if it could be related to the kidney stone we seen in her CT Scan from May 19th. They weren't aware of it and said they'd check into it. Naturally, alot of her pain could be from trying to pass it too. For the past three days Hannah has went from barely urinating in her hat to not urinating in her hat. She was going often and every time would have urinated at least 200 cc's ... so another problem we need to try and solve.

I always try and see the positive ... when Hannah first came to Children's she weighed in at a whopping 74 pounds ... last night I asked if we could weigh her again and she's down to 66.5. That's amazing. I've been watching the fluid in her right leg go down and also the swelling in her back and buttocks. Her tummy though, I'm very concerned about. Her breathing is very rapid and shallow. I have her use the barometer a few times a day and she does just fine on it.

We were up constantly last night with diarrhea and vomiting. It's so gross to tell you this, but just to show you the sense of deranged humor I've gotten I will ... Hannah is bringing up "green foamy" contents from her tummy and "green mucousy" stools. About 3:30 am I started laughing and couldn't quit and she angrily asked me what was so darn funny ... I told her Megan did the same thing on the Exorcist!! It was hysterical! She even grinned a little bit.

I'll keep in touch.

Love, Cindi and Hannah

06/04/2004
 Hannah has continued to run fevers and even went as high as 105 today. Her breathing is very rapid and she's really struggling. After a chest x-ray at bedside last night they decided to do a CT Scan this afternoon.

The doctor came and got us and delivered even more devastating news. She told us Hannah has 3 massive tumors in the abdomen and her lungs are filling up with fluid. It was suggested we take her home at this point or leave her in the hospital but to stop treatment and make her comfortable. Her time on this earth will not be long.

We asked to see Hannah's admitting physician and Dr. Jones came in and talked with us. She told us surgery is impossible at this point, chemotherapy side effects could be profound at this point (meaning killing her) and short of a miracle there was no hope.

Hannah initially did respond to the drug Irinitican ... but within a matter of days it has gotten worse and what fluid she did loose a few days ago is now back.

Hannah needs a miracle ... it's her only hope. I think of all the many, many miracles Hannah made happen over her past 7 years on this earth and I can't imagion why God wouldn't be gracious to grant her this request.

We were't sure what decision to make, even after talking with her doctor. I knew it had to be Hannah's. We went back to her room and she was screaming at the top of her lungs because she woke up and we weren't there and hadn't left her a note. As hard as it was to tell her what was happening Terry did. Lisa and I just cried. After it sunk in she said, "oh no ... I don't want to die... I want to fight and beat this". We had our answer. I asked Hannah if she wanted to tell her doctor of this decision or if she wanted me to and she said she did. Dr. Monica and Dr. Jones came in and she told them she wanted to fight this cancer and beat it too. Dr. Jones told Hannah, "ok, we will then". So this is our plan, more chemotherapy.

Hannah isn't ready to die and said she will do whatever it takes to live ... she has more work to do. Dr. Jones says only a miracle will save her. So please, please, take the time to pray for Hannah and ask God for a miracle and anything else that you think might help.

Cindi
06/04/2004
 Hannah's doctor told us that only a miracle can save her now. So that's what we're concentrating on-- a miracle and where we go to get one. Obviously what we're doing now isn't working-- so this is what you need to do to help Hannah receive her miracle. I'm asking for you to find somewhere to take Hannah to receive her miracle. Maybe there's somewhere to take terminally ill children to be prayed over or blessed, or whatever it's called. Please ask anyone who might know something and use the internet to find people or information that can help us know where to take her or what to do. I don't have a computer at the hospital, so please do my research for me! Call me at XXX-XXX-XXXX or Terry at XXX-XXX-XXXX or Lisa at XXX-XXX-XXXX with information that might help us save Hannah.

Love, the Keeton family
06/06/2004
 After the devastating news Friday evening I decided to pick myself up and let God be the one who had the final word ... not the doctors. I kept thinking over and over again what Dr. Jones told us, "we've done all we can, your daughter needs a miracle".

There were only two choices she told us ... to give Hannah more chemo called "ICE" but realizing the effects of this treatment would be profound ... and/or ... choosing to stop treatment and make her comfortable. I begged her to come up with something else, there must be another alternative because these two were unacceptable! Finally, after talking with Hannah, it was decided we would put her on another chemo drug that she's never seen before ... Adriamyacin. This drug would not be nearly as strong as the "ICE" drugs and the side effects would not be nearly as profound. I thought it was a great compromise and told her to administer the drug immediately. They started the drugs late Friday night and decided to give them to her over 48 hours. I was satisfied with that ... more time with Hannah.

I made a firm decision that although we've been asking for a miracle for the past year that I would work much harder and faster at getting Hannah her miracle and now! Terry, Lisa and Hannah agreed and I've been working trying to find as much information about healing masses that I can. Through Hannah's prayer warriors I've been receiving websites and information about healing masses all over the world.

I told Hannah to try and relax and get as much sleep as she could because the next morning she was going to receive her miracle. She was in so much pain and her breathing was so labored ... and her temperature climbed above the 105 all night.

I woke her up around 9:00 am and told her to be happy because this was going to be her "miracle day". I got a grunt and was told to wake her up later and to leave her alone because she was tired. I continued waking her and she was really mad and ready to throw me out of the room. When I told her we had to get a shower and in fresh clothes I thought the veins were going to pop out of her neck. After a 10 minute stare down with me she finally got up and went to the bathroom for a shower ... crying and kicking the whole time. She was hurting so bad and I was trying to hurry all the time getting her excited about her miracle day. After she showered she let me lotion her down and she smelled so good ... then she insisted on wearing her pink rose shirt and matching tulip pants ... the problem was they were at home. She threw a royal fit that she had to have those for her special day and called Sissy ... she was happy to bring them up.

I had been on the phone all night Friday and early Saturday morning. By Saturday afternoon she had priests anointing her with oil and later that day we had two other ministers anoint her with oil both asking God to remove all tumor in her body and restore her health. I'd also been on the telephone and was having live healing prayer going on.

It seemed hard to believe that by Saturday evening Hannah said she felt "good" and when asked if she wanted a pain pill she told us "no, she didn't need it". Her temperature never returned after Saturday afternoon and her breathing returned to normal.

Yes, she had been on Chemo for 12 hours, and in that time the tumor can be effected, but I would not have thought in the way it did so quickly.

Sunday she improved even more. She actually got out of bed and starting playing Pinball on a laptop ... and ... after 3 weeks she ate a little bit of a Blizzard and asked her dad to go get her some Popcorn! The best part is that not only is she breathing normally now, but she hasn't had a pain pill she 1:00 am ... that's almost 24 hours.

Phone calls were made and we are in the process of planning where we will take her next. On the way home from the hospital we are going to stop by and visit "The Pink Ladies". We are not allowed to go in the convent, however, after begging they agreed they would open the door and meet Hannah.

I'd really like to take her to Lourdes France but I'm just not sure ... it's so far away ... we do have a few things in the works right now though. Dr. Jones said she looked really good this morning and might be able to go home Monday ... amazing.

Please continue lifting Hannah up in prayer.

Love, Cindi

P. S. I wish I would have thought to ask the priest to make Megan go away while he was at it but I forgot. Oh, this child is so mean!!

06/07/2004
 Our precious Hannah is not doing very well. By late afternoon the pain returned and the fevers started. Her heart rate is high as well as her blood pressure. By late tonight she was back on the morphine drip and they are culturing her blood and urine again.

I am so scared about her right leg. It is huge, just as it was last year. Her tummy has started to swell even more. Our precious baby is suffering and I know she's dying, and that it isn't going to be long.

Today there were more ministers up to visit Hannah and ask for a miracle for her little body. We've been reading scripture to her and over her, even while she sleeps. She's in so much pain that she doesn't want to hear or participate though.

Mark and Debby Baugh brought her up two medallions tonight, one blessed by Mother Teresa and the other by St. Anthony ... the Saint of Miracles.

The chemotherapy she just received only lasted 3 days this time. I know they won't give her anymore.

Tonight I was pouring over more research about her cancer and sorting through all the "miracle" information everyone has been sending me. Terry was reading to her from a healing scripture book when I noticed Hannah looking over at us and her eyes were red and she was silently crying. Oh God ... the pain was so severe in my heart. She knows we're doing everything we can to save her and she also knows we're failing. I tell her how sorry I am and to keep being strong and holding on because God is listening and he is the ultimate healer.

The job of researching all the medical and miracle work is much too massive for me. I can't do it by myself anymore. Please help me by emailing these websites for me. Terry and I are trying to stay strong for her but it's so hard anymore ... I don't know how much longer I can.

She continues to only want her daddy ... and definitely not her mommy. I don't understand why yet but it's so hard. Please pray harder and ask others to help you in our search for a miracle for this little princess.

Love, Cindi

06/08/2004 - Tragic News
 Hannah has turned a corner ... she is very, very sick now. They are going to run another CT Scan after talking to the Radiologists to see if there is anything at all they can do for her. They are going to see if her huge abdomen is all tumor now or if it is the fluid causing the swelling. If it's fluid they may or may not be chest tubes in.

Never the less they told Terry we have to have the final "talk" today.

Hannah needs a revolving door of anyone who can lay hands on her or pray with her to receive the miracle that she desperately needs at this point. Please, if you know anyone ask them to come up today and reach out to Hannah and ask God to perform the miracle that only HE can do.

Love, Cindi and Terry
06/08/2004
 After a rough night of pain Hannah was taken down for a doppler of her right leg and a CT Scan. Hannah had to drink the contrast which caused her to bring it all right back up. Finally she did go down and the doctors asked to see us later that evening. We were told that the tumors are now in Hannah's lungs. We were also told Hannah had one or two weeks left to live. They wanted to discuss end of life decisions with us. I won't go into the details ... because I wasn't really listening. My mind was busy thinking about the lengthy conversation I had just had with a very special person who believes miracles do happen, have happened and will continue to happen for Hannah.

My dad's minister, Father Armstrong (missionary healer) from here in St. Louis, and Pastor Van Fange from Swansea were all here to pray for Hannah today. We were told Hannah had received her miracle and through Faith all miracles will happen.

Tomorrow at noon another very special person from Columbus Ohio will be here to pray over our Hannah. I spoke with him in depth today and his opinion and vision are that of a Prophet ... and this explanation really made alot of sense to us. I can't wait to meet him and learn what he has to teach us.

Hannah has been in considerable pain today. Her continuous morphine rate was increased again and the "bonus" as Hannah calls it, was also increased. She is still on oral Methadone too.

She knew it was a very big day for her today and as bad as she felt she tried so hard to cooperate with everyone. She also had alot of company and told me later that she wished she could have visited with them more, but that she was so tired.

Tonight I would like to ask you to pray that Hannah's heart rate return to normal. It has been in the high 170's and low 180's. Also, please pray that her breathing return to normal. It is very labored and shallow. Because we know that God is aware that we are all asking for a miracle there is no need to continue asking him. Instead I would like to concentrate on these two specific things.

I will keep you all posted as to how she is doing. I can tell you it's all out "warfare" as to who is going to win this battle of disease. We've constantly prayed by her bedside all day and here it is 2:00 in the morning and I'm still doing it. I am not going to give up, not for one minute.

Please help with continuing to support us through your love and prayers. Hannah is going to be healed but it is going to take her "army of prayer warriors" to have the continued faith that she will in deed receive it.

Sending all our love ... Cindi and Hannah
06/09/2004
 Hannah allowed me to spend the night with her last night and I am so grateful! Her dad was just too tired to do it again ... he had to have a rest. She listened to him explain this and just as I knew she would, she put his needs before hers and told him it was "ok".

She was up so much all night ... trying to go pee and having to vomit and having more pain in her chest and abdomen. Each time I helped her get out of bed to go pee she would let me hug her and she would hug me back so hard ... like it was going to be our last one. Once she let me hug her for 10 minutes. It felt SO good ... pure joy. It lasted through the night and into the wee hours of the morning ... then Megan returned.

Doctor's had to raise the dosage on her IV and "Bonus" morphine. Her heart rate is down sometimes in the 160 range but it's not long before it's back in the 170's again. Her oxygen level kept dropping so they put her on the nose tubing ... this she did not like! She accepted it though because the oxygen mask made her very uncomfortable and was too noisy.

I made a call asking Pastor Van Fange to come back and see Hannah. He agreed and made plans to come right away. Hannah had a constant flow of visitors today ... by the droves! Pastor Armstrong came first thing and prayed for her to receive her miracle again. Her VBS pastor from the Baptist Church in Alhambra came up to see Hannah this morning and again this evening. My dad's pastor came up again, a friend from his church came up, my cousin's pastor was here, my sister's pastor was here, the Mayfield family and Joe Wright were right, Pastor Huffines, and Terry's brothers' pastor. Around 1:00 pm our dear new friend Rocky Robbins came with his sister Denny.

What a day, what a day!! We all learned so much. After a lengthy discussion with my family, Denny, Rocky and Pastor Brian we decided to pray over Hannah. After a short time Rocky asked us if we would leave the room and allow him to pray with Hannah alone. When we came back in the room Hannah was wide awake and her eyes were bright. Rocky explained that the reason he asked us to leave the room was because he could feel a cloud ... and it was coming from me. After more discussion we learned that it was because I hadn't "really" given Hannah's life to God "completely". I explained that I gave her back to God when she was christened at the age of 3 months and also that I knew Hannah was a child of God and that she belonged to him. After much thought and discussion though I realized he was right. I was still clinging to her and holding on for dear life. After praying with me and Terry and Lisa I realized that I had to give her up ... completely ... her life and my peace depended on it. It was a real awakening for me. And I did the right thing too ... I let her go. I realize that I am no longer responsible or accountable for her life. Terry and Lisa came to terms as I did with many of their personal issues as well.

The Radiation Oncologists were asked to look over Hannah's medical records and see if there was anything they could possibly to as a last ditch effort .... as I knew before we went in the room the answer was no. Didn't upset me though, Terry didn't seemed phased either.

Hannah was so amazing today. There is a "puff daddy" fish on the first floor that she insists every visitor see that comes to visit her. When you have the amount of people visiting everyday that she does, this means alot of trips! Even if she is in a deep sleep or having alot of pain she will still force herself to get up and ride in her wheel chair so everyone can meet her new "friend". This is so cute ... it really is .... Hannah said the reason she likes it so much is because it has a built in smile on it's lips ... and it really does! To see her "bossing" around everyone today was hilarious, every time she went downstairs to show off her new fishy it had to be done in a "certain way" which was of course her way. Daddy had to be the one who pushed her wheel chair, the visiting pastor HAD to push her pole, mommy HAD to stay in the room and Sissy HAD to walk behind her wheel chair because the princess HAD to go first!

We know our little Angel is in God's hands and because we have faith we believe God will restore her health right back to the way it was before she ever became sick a year ago. We are looking forward and refuse to look back.

Throughout this entire day she has been more awake and alert than she has for several days. She wanted up immediately to sit in her wheel chair. She even agreed to eat something for us today ... watermelon. Sissy stopped and got her some but by the time she got around to eating it it had spoiled! She hasn't run a fever at all today. Her swelling has gotten worse despite them giving her a Lasix last night. Actually, I couldn't tell that the Lasix worked at all. Hannah is very malnourished and has got to start eating. Today we decided to take baby steps again and pray as the tumors are dying that her heart rate return to normal and her appetite return. Her oxygen is still a little low but she tolerates the nose tube just fine. Lastly I am going to ask for the swelling to lessen instead of increase. Her breathing isn't nearly as labored as it was.

Hannah has her army of prayer warriors and now army of pastoral care. Every morning I am on the phone asking yet another priest or pastor for their prayers for little Hannah. With the overwhelming amount of new emails from people everyday I know there is a tremendous amount of prayers being sent up to God every single day ... and around the clock as well. Hannah has touched the hearts of many, many people ... just by being the brave little disciple she was born to be.

Thank you God for your love and for putting your healing hands on not only Hannah but the rest of my family as well.

Amen
06/10/2004
 Hannah and I were up last night about every hour and a half. She would sit down and try so hard to urinate ... but barely anything would come out. It wasn't for lack of effort though! To try and keep herself awake while on the potty she would make me read stories to her. From the time it took to get her out of bed, and all the wires and tubes off, then to the potty ... then back in bed ...was at least a half an hour. She was so tired and in pain sitting there trying to "make" it come out and never complained once.

I became very concerned with all the new swelling in the vaginal, hips and groin area. I asked the nurse to look at her and she asked the Intern to come up. Basically there is nothing that can be done right now. This morning her little feet and ankles starting swelling and by bedtime they looked terrible. Once in bed we propped her feet up but there is just no where else for the fluid to go. We are going to see about another Lasix tomorrow.

For the GREAT NEWS so far ... her pain has become much more manageable. She barely used the morphine PCA button, didn't ask for one "bonus" today and has remained on 4 mg in her IV. She has had NO fever for the second day in a row. She has been nauseous and vomiting again today ... I asked them to put her on Zofran around the clock instead of PRN and that was no problem at all.

This morning Gail, a friend of Linda Bell's (my cousin's wife) came up with a supplement for Hannah to use for at least the next four days. But because she's starting this so late Hannah had to take 1/2 tsp every half an hour ... or 1 tsp. every hour. She's not crazy about it and especially not in her Strawberry Yogurt that we use to put her medicine in. She did ok the first few times but then it got harder. We got her to agree to try it used in chocolate ice cream (from Ted Drews). This is a big hit ... she doesn't mind it. What she minds is swallowing anything into her tummy. She has been agreeing to sips of things to drink but with this supplement it's like she's eating again.

She was still adamant that everyone who visited her had to go down and see her puff daddy smiling fish. It cracks me up that she'll be sitting in her wheel chair sound asleep and make herself wake up so she can take her company down to see this fish! She's so cute about it! Today she made 5 trips and one of them she walked down with her walker. Bossy about everything though! Now she's into this new thing where all her company has to dress up in her Princess "stuff" and pose for a picture. Tonight she had Pastor Alms wear her Princess Sunglasses, Doug, a friend from her VBS church wear the princess Robe (a blanket wrapped around him), my sister Dee had the princess crown with streamers coming down it, her Uncle Bob had to wear the Princess Hat and her Noni got to wear the Jesper Hat. It was so funny! She made them line up and pose in just the right way! She didn't think it was funny though, she was serious and meant business.

Tonight we pray for the swelling to leave her body, completely. We pray that her heart rate drop from the 150's to 120's and that she start to eat, even if it' just a little bit.

The best news of all though ... because of the heart rate and fluid they decided to take her down for a Echo gram test of her heart. I was so nervous waiting for the result, but it was perfectly fine!! I really believe Hannah is improving and that it is just going to take time for her to heal.

Thank you all for joining me in our prayers for God to continue granting his miracle in his little angel, Hannah.

Love, Cindi and Hannah
06/11/2004
 Hannah was only up three times last night. Her feet started swelling late in the day and by the wee hours they became huge. Terry took her to be weighed this evening and she is a whooping 75 pounds. Only 3 weeks or so ago she was 58 - 60 pounds. She looks so miserable. Her little legs are just as big as her feet. Her eyes look like they are set back in their socket a little bit. Her arms are so teeny tiny. Of course her belly looks like she's swallowed a watermelon, literally.

She still won't allow her IV pain medication to be increased ... says she doesn't need it to be. Her fever is at bay, thank goodness! Her breathing is much more labored today, even with oxygen we can only get her up to 92 or 93 max. Her heart rate hits the 170 and early 180's when she gets upset. She did drop into the 150's in the afternoon. Mostly she is in the high 160's though. We REALLY need to get it DOWN. One of the big problems is the compression of the vein running from the heart down to her legs. It is supposed to be open and allowing the blood pumping from her heart to circulate down to her legs and then back up to the heart again. Hannah's artery is so compressed that it takes her a tremendous amount of strength and energy to get the blood back up and she is working extra overtime ... which causes her to sleep alot. She got a transfusion of blood today and that helped give her some energy. Her white blood count is 0.2 and her platelets are dropping fast. She was started on Nupragen again today.

When we put her to bed last night the head of her bed was only elevated a little and it caused alot of fluid to fill the lining of the lungs. Her breathing has been so labored that it brings me great concern. She did get somewhat better in the late afternoon and stayed that way until early evening.

She was sleeping so good this morning when her Aunt and Uncle and their kids and granddaughter came up for a visit. She forced herself to wake up and barely mouth the words that she wanted to take them down to see her fish, Puff Daddy. Of course they agreed and after seeing the fish she even invited them to see the garden on the 8th floor. The sun was out and it hurt her skin so we found a shady spot ... all she did was sleep though. She has had no energy to go to the playroom either for several days now ...

We are still working with her every 30 to 60 minutes to get "food" into her system. The product is called Ambrotose and we mix a tsp of this with 2 tsp of chocolate ice cream. The more we can get in her the better. She is so good with her Daddy about getting it down but gives me a hard time with it. I spoke with a Doctor about this product (he works for the company who manufactures this product) and he said the more I can get in her the better. Because there are no toxins in this product it can't hurt her. She has to drink water with it though ... and you know what a battle that can be ... she wants her soda! The Doctor I spoke with today said if she had a feeding tube it would be much easier to get the product into her. I am going to talk with her doctor here about this tomorrow. Of course Hannah is already screaming she doesn't want a feeding tube! Her nutrition levels are very, very poor though ... she's getting TPN and it's not enough to support her body adequately, she's malnourished. If your interested in checking this product out their website is www.mannarelief.org

Before bedtime Terry got her to get out of bed and walk downstairs to the cafeteria with him using her walker. There's another fish tank down there. She is just amazing, she refuses to give up and give in to this sickness.

She's been dreaming all day and talking in her sleep and I heard her having a conversation with Dr. Chu at Cardinal Glennon. She was arguing with him over the nickname he called her. "Princess Hannah, Ambassador of Friendship, Social Butterfly". She wanted him to give her the title of something a little bit different. She was also playing with Jake and arguing with him over who was winning some kind of game they were playing. She's also been "bossing" kids around on the playground at school!

I'm asking again that we pray specifically for the swelling to DECREASE and her heart rate to go DOWN and respiration to come UP. Besides praying for a miracle to completely heal her little body, I thought it was a good idea to look for little signs and be grateful for each and every sign we see for progress.

I keep forgetting to tell you about the website my cousin Judie has made for Hannah. The website is www.aylajane.com. Jessica, a dear friend, went to www.caringbridge.com and made up a website for Hannah too.

There were many, many prayers sent to Jesus today ... I know because her morning was so awful and by bedtime she was better. Thank you to each and everyone of you that make the time to help share in the quest for helping Hannah to receive her miracle. Please don't stop working, we're not there yet.

All our love, Cindi and Hannah
06/12/2004
 Hannah was only up twice through the night trying to go to the bathroom. Her breathing was so bad that she couldn't get up without her oxygen to help her breathe. Yes, believe it or not she was even more swollen in her abdomen.

This morning her doctor woke me up to tell me that this was the time Hannah had to go down to PICU and have the chest tube placed. Her white blood count went from 0.2 to 0.1. He gave her a transfusion of platelets before allowing her to go down.

In the meantime Hannah received a visit from two nuns. They were very nice and prayed over Hannah. Eventually they sang a couple of songs to her. She was so exhausted that she wasn't able to participate though. All she is able to do anymore is sleep and holler at you if you do something she doesn't like! But I have to tell you that as weary as she was this morning she mumbled the words, "I want to show the Sisters my puff daddy fish". I thought I would cry. I tried convincing her this was a bad idea at this time, but as usual it fell on deaf ears. She insisted even when the Sisters tried to explain that this was not a good idea. I told her we would let her doctor decide and again the answer was no ... they were in a hurry to get her down to PICU. Why I don't know, she waited down there two hours before they inserted the tube. Hannah's heart was broken as was mine. This was the first time she wasn't allowed to share her special "fish friend" with her visitor.

Once we were in the PICU It was decided that a CT Surgeon would insert her chest tube at her bedside. Certainly the Attending could have, but her risk is so high they didn't want to take any chances. They told me they really wanted to use a "pigtail" tube instead of the usual hard and rigid tube. This way Hannah could be clamped off and would be able to remain mobile (to show off puff daddy). Her oncologist was concerned we wouldn't be able to because he was concerned the fluid would be too thick to flow through the smaller pigtail. Everything went fine though. There was no problem inserting the tube and no problem using the pigtail. Once the tube was inserted alot of fluid came out ... it was under pressure. They are only draining the fluid 200 cc's at a time, every four hours. If the tube was allowed to constantly drain they could have new problems with the lungs collapsing.

She has continued sleeping almost all day. Her vitals all over the place, sometimes normal and other times quite high. We were praying her heart rate would drop into the 140's range, but because she has spiked a fever that didn't happen. Of course they are giving her all kinds of antibiotics but there is concern with a wbc of only 0.1.

Before she was taken down she had a chest xray at bedside, after the tube was inserted she had another xray, then after she was drained a second time she had another xray. She HATES these in the worst way. They come to her bed and all she has to do is allow them to put the big film box under her back ... but it just makes her all kinds of mad to do it.

I got her to eat 4 bites of ice cream with her "food" in it on four different occasions today. She also drank around 4 ounces of water ... which for her is good. Terry is here tonight and I'm up in her room on 9 West and he is with her so I can get some rest. I think we'll probably rotate shifts.

I am going to ask that you keep Terry, Lisa and myself in your prayers tonight as well as Hannah. Seeing her abdomen continuing to grow and become more huge was overwhelming for us today. Hannah is getting worse quickly and it's hard to see her fight the way she does without getting a break.

I'll keep you all posted.

Love, Cindi and Hannah
06/13/2004
 Hannah did ok last night in the PICU. There was certainly no problem draining any fluid from her chest cavity. She was so sleepy and out of it that I was able to leave her and come up to her room and get some rest. Around 6:30 am I got a call from her PICU nurse telling me that she refused to take her oral medicine without mommy there to give it to her in strawberry yogurt. The nurse tried to convince her that she could do the samething I could do but she wasn't having any part of it.

She did get to come back up to her room this afternoon. Before bringing her they done a chest xray and after all the draining it still showed a massive amount of fluid. Once up here all she did was sleep, sleep, sleep. For three days in a row now that's all she's done is sleep. We were assuming it was from all the work she's been doing having to breath so hard ... but now we are second guessing that. I'm sure she's getting too much morphine. She's on 4 mg in her IV constantly, and a "bonus" of 2 mg. She hasn't asked for a "bonus" once and she hasn't pushed her PCP pump button once. We took her down to see "puff daddy" to try and wake her up but it did no good. We took her up to the garden on the 8th floor and she still continued to sleep! I tried and tried to wake her but it did no good. While we were up there her morphine pump started beeping that she was low and almost out ... I let it run out. She was without it for over an hour and didn't even know it. I asked the doctor to have it turned down to 3mg but he wanted to take her down slower at 3.5 mg. Then we went back up to the gardens for a visit later in the day to visit with the Friedman family. While we were up there she still slept ... then we realized she had run out of oxygen from her tank and she was breathing just fine without it! A Miracle! We brought her back up to her room and put her back on the monitors and it showed her oxygen level to be between 90 and 92. Every now and then she would drop below 90 but overall she done great! Just because I'm a big chicken I decided to leave it on her through the night. I plan to take it off during the day tomorrow and she how she does!! I'm also going to ask that her morphine be cut back to 3 mg and we'll see how that goes too.

I'm very concerned about the swelling in her tummy and now feet and legs. Her legs hurt her so bad tonight that she couldn't walk on them. She tried and got as far as the elevator (from her room) then started crying and had to go back into her wheelchair. When we got her back into bed her legs, knees, and feet were HUGE. She can't even lift them anymore. Bless her little heart.

Terry and I have been getting her to eat her "food" mixed in her ice cream and she's trying so hard ... but her tummy has no room in it to eat anything. We just take our time and spend the entire day working on it. It must be working because she still continues to go to the bathroom! I'm going to talk with her doctor tomorrow about a feeding tube.

Her heart rate continues to be high and at some points in the day very high. Her blood pressure and temperature are good though. Every once in a while she will throw you a curve and spike a fever but with Tylenol it's gone almost immediately.

Earlier in the day I worked with her and got her to have a mental picture of her with Jesus. She told me she seen herself sitting next to him by a river. I told her to put herself in his arms and picture herself being healed in his loving arms. She told me when she got that mental picture. Then I told her what she should ask for and pray for and she told me that she figured out what to say. Then I told her to picture herself healed and asked her what she seen herself doing. She told me swimming and I took it a step farther and we were having a welcome home from the hospital swimming party at home.

Throughout the rest of the day we talked more and more about her conversation with Jesus and she woke up ... and stayed awake for a while. Lyndsey Roberts from the Oral Roberts Ministry had sent her a child's cassette tape and book to read along with her while she talked. Hannah really enjoyed doing this. After I got her ready for bed she asked her dad to read her a good night bible story from a new book she just received.

She's been up in the wee hours of this morning vomiting and her heart rate is making the alarms go off. When the nurse tried to drain more fluid from her chest tube no more would come out! We're hoping and praying this is because there is no more fluid and not something else like it's clogged or something is in it's way preventing it from draining.

I know God's working miracles and I know he's going about them in ways that I never thought imaginable. As long as he hears our prayers it doesn't really matter one way or the other.

Thanks to each and every one of you who continue to love and support us as you have and as you continue to do so.

Love, Cindi and Hannah
06/14/2004
 Hannah had some problems throughout the night with her heart rate dipping into the mid 180's and the alarm going off. She woke me up constantly thinking she had to pee but really didn't. It's the pressure of the fluid and tumor on her bladder.

We found out this morning why she had been getting sick at the stomach. When she was transfered to the PICU there wasn't an order written for Methadone or Zofran. She went 2 1/2 days without either one until I figured it out today. The withdraws from Methadone alone could cause vomiting. She was getting Zofran PRN but not around the clock as we were doing previously. Hopefully her tummy problems will now be resolved and she'll feel a little better.

The night nurse wasn't able to pull any fluid out of her chest tube last night and to make a long story short a chest x-ray was ordered to make sure everything was ok. Turns out there is a difference between the one she had this afternoon and the one from the day before. So hopefully the problem will be resolved easily this time.

She has not wanted any pain medication and I've had them cut way back on both her Methadone and Morphine. They tell me she must be weaned off both drugs gradually. Everyday we will make a reduction until she tells us to stop. Tonight she did complain of chest pain and I asked her to point to the area and it was right over her heart ... I'm not sure what this was about.

She slept all day again today! It makes me so uncomfortable as it is just so out of character for her. The type of sleep is very deep and it's difficult to arouse her. We're blaming it on the medication and the fact that her body needs alot of sleep to recover from what has happened to it.

She had a visit tonight from a dear friend, Cole. She wasn't so asleep she couldn't force herself to wake up just enough to take him down to see her "Puff Daddy" fish though. I was in the library doing some research but Terry told me that she even tried to walk down instead of going in her wheelchair. Unfortunately she had to stop and get in the wheelchair, but I sure take my hat off to her for the effort she continues to make.

We asked her dietitian to come in today and we discussed with her what we were doing with her "food" and chocolate ice cream. She agreed it was a great idea. She had a better suggestion ... ice cream is hard on her tummy right now (which I didn't know) and she suggested mixing the "food powder" in some chocolate Ensure and inserting it into her mouth with a syringe. We tried it and it's much easier ... for everyone. Not that she likes it, she just doesn't have to put as much energy forward. We're still getting her to drink water too.

Her little legs, feet, tummy and bottom are so grossly swollen. Please join me in prayer asking God to grant this one specific request for Hannah. Her temperature has been up and down all day but finally I got to see her heart rate dip down into the 140's for a little while!! Her blood pressure is stable too. Her oxygen is very stable, and she could go without oxygen for most of the day.

I will keep you updated and thank you for all your continued prayers for our miracle.

Love, Cindi and Hannah

06/15/2004
 Last night was a repeat of the night before and for the most part her day was the same as yesterday's as well. Even though we've cut her Morphine back a little she still is sleeping sound ... all day!

A good friend of mine from the courthouse came to see us today and as sleepy as Hannah was she woke up enough to insist on Debbie seeing "Puff Daddy" and the Garden on the 8th floor. So we all went downstairs and even though my sister and niece had already seen him Hannah insisted they come along too!

She had to get her port needle changed today which means she is without anything going into her body for the hour it takes to put Emla Cream on the skin to numb it. Since we were free of poles I asked to take her back down to visit Puff Daddy and she readily agreed. Our friend Diana was leaving and she took the opportunity to show her fish to Diana AGAIN. As we were going back to her room we ran into Hannah's "angel friend" Karen at the elevator. Since Karen brought her husband with her this time we knew Hannah would insist on showing him Puff Daddy so we didn't even bother going back up to the floor. Of course Puff Daddy came right over to say hello. She then took them up to the garden on the 8th floor. When I asked her if she wanted to come in she kept sleeping and shook her head no. She really loves it out there ... it's beautiful!

We have had Hannah on this natural food product that promotes healing and regeneration of blood cells. A true prayer warrior brought over another product that his father knew from experience worked for curing cancer. We tried her on this product today too.

This evening her heart rate was in the 140's and her oxygen is 96 -97% ... what we've been looking for! I showed her feet and legs to her oncologist this evening and he ordered another lacix and that has made a huge difference. Thank God!

She's starting to have areas of her skin breakdown from the swelling...especially the groin area. It's just awful! She's also complaining of pain in the knee of that same leg. The doctor ordered her some new skin care medication.

Hannah ran a fever this morning and afternoon ... but not this evening!

She's so sweet and such a doll. She tries so hard not to be Megan, but sometimes she just can't help herself. Everyone tolerates it just fine and alot of times we will just laugh at her.

She's been receiving tons of cards and stuffed animals. She was trying to read some of them this evening but kept dozing off. Thank you for reaching out to her and letting her know how loved she is.

I'll keep you posted.

Love, Cindi and Hannah
06/16/2004
 Hannah had a rough night complaining of alot of pain in her left upper leg (from the groin area) down to the knee. She was pushing her morphine button and asking for a "bonus" for 3 hours this morning.

Since starting Hannah on her new herbal program she has started going to the bathroom much more ... diarrhea ... but at least she's going. She's drinking alot more for us too. Not only the Aloe Vera juices but water too.

Her heart rate today has been in the 150's and sometime in the 140's. Tonight as we were saying our prayers in dipped into the 130's! Wonderful!

Her blood pressure and oxygen levels are perfect. She received a lacix yesterday and the swelling was much better ... I'm hoping it will remain better for a while now. She does continue to spike fevers though. They are culturing everything and it always comes back "no growth".

She was wide awake this morning, sitting up and watching cartoons when Terry got here. I had worked with trying to get her to wake up and just turned the tv on and stuck it in front of her ... the Rugrats were on and she loves them. Shortly afterwards they gave her the Methadone and she went right back to sleep and for most of the day that's all she's done.

She continues to tell her doctors and nurses that she doesn't have pain and doesn't want them to give her a "bonus". They look at her (and me) like were crazy! If Hannah tells me she is not in pain and doesn't want the medication I support her and will not let them give it to her anyway. They don't realize as I do that God is working a miracle in her little body.

I wish the swelling would ease up on her abdomen and vaginal area. It's so bad and just when you think it can't get any worse it does.

So tonight we are praying specifically that the swelling would become reduced in a large way and that her heart rate will continue to drop ... this time to the 130's! This is progress and I'm very grateful. Little baby steps ... but we're getting there.

Thank you for all your support, love and prayers.

Cindi and Hannah
06/17/2004
 Hannah was up through the night a couple of times crying with left groin, knee and leg pain. She pushed the morphine button and asked the nurse on two different occasions for a "bonus".

When we finally woke this morning around 9:30 am her neuphrostmy bag was bulging with urine and I was so excited I thought I was dreaming! I pulled the sheet off Hannah's legs and feet and they looked SO much better! I started shaking Hannah's shoulders and hugging her telling her to LOOK! We both were ecstatic that God had answered a prayer to release the swelling in her little body and were rejoicing when her nurse came in and told us that she had been put on lasix twice a day now and that the dose was very tiny. We didn't care though, we still gave the glory to God.

Late this morning they decided to do another chest x-ray because they have not been able to drain any chest fluid for over 24 hours. I was so sure that it was because there wasn't any fluid to drain ... wrong. The x-ray showed that there was alot more fluid than there had been 2 days ago. They figured it was because of the placement of the pigtail tube. Someone from CT surgery came and after Hannah was sedated, manually moved the tube around with her hand. I find this very worrisome ... more risk of infection.

She continues to run fevers off and on and they continue to culture everything. Everything continues to come back normal so far. Her heart rate was in the 130's most of the day today!!!

Today it was mentioned that they might start thinking about sending Hannah home with hospice. As long as she's running fevers she won't ... but that's where their thinking is headed. They decided to increase her Methadone from 5 to 7.5 in hopes that this increase will allow her to receive less of the Morphine.

I've been so tired for a few days now, barely able to comprehend much of anything. When Terry came up this afternoon I told him I was going home. He readily agreed to stay the night for the next few days until I get some sleep caught up and much needed paperwork stuff caught up. Of course Hannah had no problem with that at all! She told me that's what she's been wanting for over a week now.

Just after I left this afternoon all the excitement arrived! Both my sisters and niece came, Karen and her daughter came, my daughter Lisa was already there, Papa Keeton came up with Terry, Markie's mom and a friend named Peggy came, then the Friedman girls came with their friend and artist Maddie. They turned Hannah's room into a princess room!! I haven't seen it yet but Shelley called me and told me what it looked like and it sounds beautiful! I can't wait to see it! I will be sure and fill you in tomorrow after I see it for myself personally. I do know they hung Christmas lights and tulle, installed the princess doorbell that Karen bought her, and done some really cool things to her window. I talked with Hannah tonight about it and she told me she really liked it ... but ... didn't want that in her new home princess bedroom. I've got a feeling that she doesn't want anything from the hospital replicated at home.

She continues to sleep alot, the morphine and methadone see to that. Sometimes her spirits are high and other times she just wants the whole world to go away. I wish there were something I could do to make her happy ... I'd do anything. There is a lady with a Dalmatian dog and her name is Nell. She comes around dressed in costume to visit Hannah. Last time she came she got up in bed with Hannah and they snuggled. They made plans to come back today with Nell dressed as a princess. Talk about cute! Nell was adorable and I loved her outfit! I took some pictures and will send them soon. But even this didn't excite Hannah. I was surprised when Hannah told Nell not to lay on her tubes and when Nell turned away from Hannah and laid on the bed with her head turned away from Hannah's I thought I would cry.

Since God answered two prayers, one with the swelling and the other with the heart rate in the 130's I thought it was time to ask for something new. We are asking for the watermelon belly to lessen or disappear and that her attitude and spirit return to the special little sweetheart that she was before becoming ill two months ago. Please keep these in mind when you are praying for our angel today.

Love, Cindi and Hannah
06/19/2004
 Hannah has continued to be the same Sunday as she was Saturday. There was still a problem with the pigtail and draining fluid from her chest. The CT Surgeon who placed the pigtail decided it was time for a CT Scan to see what was going on. It was finally decided that the pigtail was in the wrong placement. At her bedside he manipulated the tube and now the fluid is draining plentifully. Later he told Terry that he was afraid that the tumor was blocking it. Thank you Lord!

Poor baby still complains of pain in her legs. The new attending doctor, Dr. Josh, said he wanted Physical Therapy to start coming in to see what they could do for her. Her little legs and feet are still swollen and she's still receiving Lasix.

She had brand new company today ... Jennifer ... who has never seen Puff Daddy. I was at home when Jennifer came by and when Lisa told me Hannah didn't get out of bed to show her Puff Daddy I was shocked! She must have been hurting!

Late this evening Terry asked the resident to read the CT Scan results to him. The scan showed there has been no change since her last CT Scan on June 8th. I thought this was bad news until we asked more questions and really thought about it. The synopsis is that the tumor has not grown in almost two weeks which means this the tumors have not grown in almost two weeks. That's a good thing!

It's the little baby steps that God is insisting we take during this time. Little baby steps is very difficult when your as anxious as we are. I want to see her up and walking and singing at the top of her lungs and interested in reading a good book again. I don't think this is asking too much ... but God must. The fact that she's drinking 24 - 30 ounces of water a day is wonderful ... that she's drinking healthy drinks and juices and eating "food" that helps the body heals itself (and tastes awful) is a miracle in itself!

She doesn't complain at all either. Sometimes she cries because she doesn't want to eat or drink what she needs to ... but she's so sweet, she'll do it anyway.

She continues to want her daddy and insists that he spend the nights with her. As hard as it's been I've finally accepted this and Terry has been staying the last few nights with her. It's ironic because he hates to and I love to! He has a very hard time sleeping and once he's woken up it's almost impossible for him to go back to sleep. I, on the other hand, have learned to sleep for 5 minutes and make that last at least a couple of hours. To sleep for an hour or two without being woke up is like sleeping a whole night!

I guess when we allow Hannah to be the "boss" this is what happens. It's amazing what these two grown parents allow this 7 year old little girl to get away with. I can't help it though, anything she wants I can't find it in my heart to say no. I've tried believe me but I just can't! She asks for so little and it's so important to her ... and I can't find a good reason to tell her no, so yes, she gets to be the "boss".

Please continue to keep Hannah in your prayers. Happy Father's Day to all the dads out there who are reading this email right now.

Love, Cindi and Hannah
06/20/2004
 Hannah has been a sleepy head all day today! This morning they took her down for a chest xray and pushed her morphine button and gave her a bonus too! I hate it when they do that because she is zonked for the rest of the day. She tried so hard to wake up ... she hates this "drugged state" as much as we do.

She was really glad to see me today ... I've been gone since Friday. She did tell her dad that she wanted him to stay the night though. It only took me a little prodding to get her to change her mind though.

A new attending took over last week for Hannah's care. His name is Dr. Josh Rubin and tells everyone to call him Dr. Josh. He comes from Dana Farber which is located in Boston and is affiliated with Harvard. He brings to this hospital his experience with Anti-Angiogenesis. He's suggesting this type of low dose chemotherapy which is given orally on a daily basis. This is a different type of approach which is designed to stop the growth of new blood vessels which feed the tumors. They're sure she will never be cured, but it might slow down and stop the growth for a little while ... until the tumor figures out a way to get a new blood source.

We didn't get to speak with him this evening as he is out of town but we did with the "fellow" Dr. Monica. She has been overseeing Hannah's care since our first day here. In her opinion this will hopefully give us a short while longer with her and because the side affects are very minimal the quality of life is supposed to be raised considerably.

This is a very tough decision for us right now. We are not in any hurry to put chemo drugs that she's already seen before ... Cytoxan and Etoposide back into her body. There are two other drugs that would be added to this mix ... Thalidomide and Celebrex. She would stay on these drugs for a year and the protocol stops with information after one year because she isn't expected to live that long.

We have alot more questions for Dr. Josh tomorrow. Right now we are swaying toward continuing with the natural healing products we've been giving her. Of course we're praying daily for God to grant Hannah a complete healing from this awful disease. We ask you to please continue praying with us and asking God to answer your prayers as well. Thank you to the many of you who have asked your pastors, ministers and priests to come and lay hands on Hannah. Please don't stop ... we've only begun this battle.

Love, Cindi and Hannah

06/21/2004
 Hannah finally got settled and in bed for the night around 1:30 am. She had to pee and was back up by 6:00 am. She stayed up awhile and we talked a little bit about our day. Her attitude was to try her hardest to have a really good day.

Her surgeon decided he wanted yet another chest xray to see the placement of the tube and amount of fluid in the chest ... the drainage was very little from the pigtail after the first draw. Sure enough there was alot more fluid and once again the pigtail was pulled out farther and we were told if this didn't work they would have to take it out and replace it in another location. We've been incredibly lucky with infections so far and the thought of taking another chance makes us very uncomfortable. Before she went to bed tonight Terry told her he was going to pick her up upside down so the 200 cc's would be a cinch to get. She just looked at him and rolled her eyes in that "yeah, right" look. She ended up only getting 160 cc's and that was with Hannah doing an awful lot of hard work.

Because she was going downstairs for the xray the nurses automatically want to give her more pain medication in anticipation of what will happen downstairs. This time I said no because I wanted to see how she would do on her own ... and she did fine and didn't require any additional. When we came back up to her room another new pain medication was waiting for her with her Methadone ... I'm not sure of the spelling of it ... it's Neuroton and this is used for the nerve endings. I was shocked when she told both the nurse and I "NO"! She went on to tell us it was her body and she was tired of sleeping all her days away. I'm standing there looking at her with my mouth open wondering if this was MY Hannah! I took it over to her with her Methadone anyhow hoping I had just misheard her and found out she meant exactly what she said. With that amount of defiance I figured I'd let her and the doctor battle it out. He came in within 30 minutes and told Hannah he was very new but had spend alot of time looking at her records and was also amazed that she refused to take this medication. He told me to let her have the final decision though.

He took the time to explain to both Hannah and I why she was so darn sleepy. Turns out for many different reasons. It would take too long to go into all of them but the bottom line was to MAKE her get out of bed and WALK. No TV (she doesn't watch much of it anyway) and to find her way back to the playroom. Period, end of story. As luck would have it Hannah fell asleep during this conversation! He also listened to my theory of the nurses making sure that Hannah was comfortable all the time but in doing so gave her too much medication. He decided we would all have a lengthy conversation about this and the new treatment protocol that he was recommending. I asked for an order for PT to see her and by this afternoon they were here. I knew somebody was really going to get it when it was time to put her back on those terribly swollen feet and legs and I sure didn't want to be the one!

They were up to get her within 20 minutes and she was still asleep. She HATES to be woken up from a sound sleep and asked to GET UP. She'll open her mouth for her temperature to be taken, or raise her arm for her blood pressure, etc. BUT don't ask her to jump out of bed and take off ... well they insisted and to make a long story short she cried and cried and begged us not to make her ... it broke my heart! I couldn't stand it!

Eventually I did help them make her get up and once her slippers and bathrobe were on she quieted down and took off down the hallway and did great! To distract her the PT asked her what some of her favorite things to do were and she told them anything with arts and crafts. Hannah wouldn't answer them what kinds of things she liked to do so I did. As she continued to walk we were getting closer to the elevator and she made a turn to get on them ... we asked her where she was going and she yelled, "To the playroom where'd you think"! I went back and got permission and we took her down there. She walked the entire way with her walker by herself ... I was so proud of her!

The playroom was closed but they agreed to open it for her ... then Daddy showed up and the three of us had the whole playroom to ourselves. She wanted to color so the three of us sat and colored for an hour or so. Her attitude was still reserved but I know it was what she really needed.

Just as we were getting her in bed Dr. Monica came and got us for our talk in "the conference room" my least favorite place to go! It was both doctors, the social worker and Terry and I and the first thing he wanted to talk about was the one thing I refuse to discuss ... her death. As gentle and kind as he was I still felt like I was going to throw up and had to stop the conversation immediately. I know it's there job to continue to bring this subject up to us because like he said this hospital has to know our wishes and be prepared when it happens. He also wanted us to know there are people here that can help us approach the subject and find a place to begin. I explained that it wasn't that I wouldn't it was that I couldn't! He told us it would all be so much easier once everyone knew what to expect and what our wishes were. He also told us that if we didn't feel that this was something we could do ourselves, and if we wanted to give up control of the decisions we could and they would have someone else make the decisions for us. Boy was that a big fat NO! We explained that engaging in this conversation would be a form of betrayal to ourselves, to Hannah and to God. We believe that it takes devout faith in God to heal Hannah and we are not about to hedge or engage in any conversation that would deter us from this. I know it makes it uncomfortable for the staff here but that's not our intent at all. Terry's such a peace maker though, to make them happy he assured them that if Hannah's condition ever got so severe that we thought we needed to revisit this subject with them he would let them know right away.

We then talked about Hannah's DNA in cell and tumor form. After he was done talking about blood vessels and cells we realized how the new type of treatment he is offering her would be a much better choice than looking for other studies at other hospitals. He ended this conversation on the same note we started it on ... probably 3 to 4 months. Of course everyone is different and who knows this may not even work for Hannah at all. He was pretty confident it would though ... his experience with this protocol has been very good.

We chose to end the conversation on a much more positive note. We explained how Hannah went from having one tumor and new cancer growth in the lining of her abdomen on May 18th to having 3 massive tumors in her abdomen, her entire abdomen lining, both lungs ... all within 3 short weeks. We KNOW how aggressive this disease is ... but in the last 12 days it just stopped growing. We are focusing only on the positive. We've heard one month, we've heard one to two weeks, and she's surpassed this already. Every day is such a special gift with her and I treasure every moment with her. There is a peace in that, I just can't explain it. I can't worry about tomorrow or next week or even next month. I don't take life one day at a time ... I take it one moment at a time. Even tonight when she urinated on the potty and it was all blood I seen the good in that ... at least her kidney is still functioning.

After our consultation we came back in the room and made Hannah get up and go outside to the gardens. It was 8:30 at night and it was beautiful outside. Once again she didn't want to get up and go and I bargained with her ... she would start out with her walker and if she started hurting too much we would let her go down in her wheel chair. She walked all the way to the elevators with her walker but just couldn't go anymore. Once we got outside we found we had the whole garden to ourselves. It was so nice! We took our time and I pushed her all around showing her all the flowers and asking her what kind she wanted for her balcony outside her new princess bedroom. She loved the pink and purple pansy's and pink upside down sunflowers. She liked several more but decided those were her favorite. We parked by the swing and I tried to get her to get out of her wheelchair and sit with me but she wouldn't budge out of that wheelchair. Terry was on the phone and missed our hour out there. Hannah and I just looked at one another and smiled and held hands. We said hardly anything. She is the oldest 7 year old I've ever known. After a little while I moved her down by the bridge with running water under it and we had the same conversation that we had the last time I took her over to that area. We talked about when she closed her eyes and prayed what she envisioned. Once again, it was Jesus sitting on a rock in a stream with lot's of green bushes and trees around him. She told me what she said to Jesus and what she asked of him. I told her what I envisioned when I thought of Hannah praying to him and she listened very carefully and interrupted me when I said, "Heaven is the most peaceful and beautiful place anyone would ever want to be" and she opened her eyes and looked over at me and said, "that's right, but I don't want to be there right now". I tried to get her to explain to me why and very simply she said, "because I've still got stuff to do here and I'm not ready".

I know you'll continue to keep our family in your prayers ... thank you.

Love, Cindi and Hannah
06/22/2004
 Hannah had a good night last night, and only woke up once to go to the bathroom. Her vitals were perfect and continue to remain that way today. We got her up this morning and she walked to the playroom with PT and sissy and then Karen arrived and they colored some pictures.

Her mood has been foul and I wish I could do something to make her "feel" better inside but I know that I can't.

Because they couldn't draw any fluid from her pigtail last night it was decided to take her down for another chest xray this morning. It showed much more fluid in the chest than what had been there and unfortunately had to make the decision to remove the pigtail. Another pigtail will have to be placed in a different position or they may decide to put in the old fashioned chest tube. Which meant Hannah was NPO all day. It was very disappointing that we couldn't feed her the natural supplements that've we've been giving her. Around 6:00 pm an emergency came in from the PICU and the surgeon had to cancel her and reschedule for tomorrow morning. Another day of not receiving her supplements ... makes me very nervous.

My sister came up after work and we took her down to the gift shop and found lot's of princess things! Mommy loved shopping but Hannah didn't at all. After shopping we asked her if she wanted to go back to bed or to the garden and she chose the garden. It was once again a beautiful evening and we enjoyed it very much.

Because they stopped her Lacix her feet and legs and very swollen and after a big day today she was hurting. The area around her toenails looked like it was turning blue. We propped her back in bed and wrapped her feet up to warm them up and within a couple of hours the blue color was gone and a little bit of swelling.

The best news is .... Hannah was sitting straight up in bed tonight when her nurse came in to try and drain the pigtail and guess what ... it just poured out! Another prayer answered! We really, really didn't want her to go back down and have the pigtail replaced!! She not only got the required 200 cc's but went ahead and got 100 more! Because she was still draining good she went and asked the doctor and he said she could get another 150 but had to stop. I'm so grateful she's draining!!

She was awake alot more today than she has been in a long time. Her morphine was cut back from 3mg to 2.5 mg's and she only pushed her button once ... she didn't require any "bonus'" either.

Karen brought her up some neat Popsicles and she said she wanted one! She ended up only licking it a little bit but at least it was a start. She also tried a bing cherry daddy brought up but decided she didn't like them right now.

She had a great day and is getting better everyday. All the glory goes to God!

Love, Cindi and Hannah

P.S. When Hannah was weighed a week ago she weighed 83 pounds and night before last she was down to 75 pounds.

06/23/2004
 Hannah got up and went down for another chest xray. Because she drained so much last night we were sure they would cancel her surgery to replace the pigtail. The problem was after a terrific night of draining she stopped this morning ... just like that. The chest xray showed there was improvement ... but ... still she had too much fluid. We decided and the surgeon agreed to give it another day. Once again, tonight she started draining fluid and the nurse has been able to pull off a ton of fluid! There must be something about night time.

She got up today for her walk and decided to show both Papa's, Sissy, Pastor Brian and her PT's "Puff Daddy". She did it all with her walker ... no wheelchair!! This morning we even got to see Hannah's heart rate dip into the 120's for awhile.

She's been complaining of pain in her legs, knees and groin area. It's fluid build up and when Dr. Rubin looked at her this afternoon he agreed to put her back on one tiny dose of Lasix.

She's taking all her juices and tea's and not complaining much anymore. This afternoon when all her company was here she decided we all had to have a "taste" of this Green Magma juice and Flor Essence herbal tea ... everyone willingly agreed too! Then when Shelley came up this evening and Hannah was drinking hers she insisted Shelley have a taste too ... believe it or not Shelley willingly agreed ... that's love.

We prayed last night for her heart rate to dip into the 120's and for her pigtail to drain. God granted both of those and the fluid coming out the pigtail was massive, guess tonight we'll have to add to that so he'll know to keep doing this all day. We also prayed for her heart rate to drop into the 120's ... and it did ... tonight we prayed for it to stay there. A friend once told me you have to be very specific in what you ask for, so tonight we plan on making that more clear.

Several people who seen her today who hadn't seen her since last week couldn't believe how good she looked! Her oxygen rate has been so high that we took her off of it around 2:00 pm and haven't put her back on it since. Way to go Hannah!

I also asked that her Morphine IV drip be turned back from 2.5 to 2.0 and she has been fine with that. She has only pushed her button twice today and that was because of the leg and knee pain.

She also went off Zofran around the clock and now only gets it PRN (when she asks for it). Yesterday and today she has only had two doses.

She really is getting better and we're so grateful. Again, we give all the glory to God. Thank you all for your love, support and prayers ... look at where they've gotten us.

Love, Cindi and Hannah
06/24/2004
 More good news ... Hannah took her oxygen off yesterday afternoon and it is still off! She is amazing ... her oxygen level is between 96 and 100 ALL the time! I'm so excited. Despite all the problems with the fluid in the chest she is still breathing just fine. God is Good.

Her heart rate has jumped back into the 140's though. She is so anxious and everything is like a catastrophe in her life if everything is not done just right and as she says they should be. She needs to mellow out.

This morning she went down for another chest x-ray. The results were the same as yesterdays. I explained my concern about the drainage coming from the site and the nurse said she would pass it along to the surgeon and see what he thought ... I haven't heard back so I can only assume he's not concerned about it too much. At least the nurses are able to drain off fluid and at times it is alot and other times hardly any.

This afternoon Sissy came up and asked her if she wanted to go to the playroom and Hannah's first response was no ... then she remembered there was a Luau and quickly changed her mind. They stayed for an hour and came back. Then it was time for PT and she got up and done that too.

Here's the best part ... we decided we would ask for a pass to get her out of here for 3 hours or so and Dr. Rubin quickly agreed. Hannah did beautifully, hardly complained at all. She was hep-locked and had NO pain medication going into her body for the entire time. Before we left she was given her Methadone and Neuroton. The nurse also gave her a "bonus" and Hannah pushed her morphine button too. Poor baby was so doped up all she did was sleep. She was so glad to get out of this hospital ... she needed this. I am going to ask for another pass tomorrow too, if Hannah is up to it.

The swelling in her feet and legs is just awful. She complains of alot of leg pain coming from her groin area. She needs to walk and let those muscles do their job ... but she doesn't want to and I think it's more anxiety than anything else.

This evening when we took her to the family reunion we happened to meet a group who offered to pray over Hannah and perform what is called a Energy Spiritual Healing. She was sound asleep and since we were told it was all based on the bible we readily agreed. It's amazing what energy can do. They could actually feel the energy in her chest and kidneys and Hannah reacted in her sleep to it ... by breathing deeply and exhaling out in a way that is hard to explain. I don't believe in coincidences and I'm so thankful they just happened to be at the same place we were.

Please keep those prayers coming ... it's beautiful to see the changes in Hannah. We love and appreciate everything you continue to do.

Cindi and Hannah
06/25/2004
 Hannah had a pretty good night last night after settling her back in from our pass out. She woke up this morning and had to go have her daily chest xray. Dr. Huddleston, her surgeon decided this would be the day to replace the pigtail chest tube.

Wanda, a dear friend of ours brought her three darling daughters up to visit this afternoon and Hannah didn't say two words to any of them. They brought her this precious Princess Build A Bear bunny rabbit name Hannah Grace! It's the cutest thing! There was also a blue Cinderella gown to change into. Before they left she asked if she could show them Puff Daddy and her nurse came in the room and said PICU was ready for Hannah and that she couldn't go ... Hannah started crying and I looked at her nurse and told her that they could just wait a few minutes. We always hurry up and get down there just to wait for 3 hours till they get things ready.

Hannah's been noncommunicative since becoming ill this time. She's been this way for three days now and I'm getting concerned. If she would just try and communicate with us and share with us what was wrong we could help her ... but she won't ... she says there's nothing wrong.

She did beautifully today and everything went well with the procedure. Dr. Huddleston decided to leave the pigtail that was there and put another one in a little lower and more towards the back. She was only in PICU a total of 5 hours!

She was in alot of pain coming from the site area and required alot of pain medication, which meant she slept most of the day today. When Dr. Huddleston inserted the pigtail a tremendous amount of fluid came out. I was told today that they aren't certain where the fluid is coming from. There is a medication that can help dry it up and she was started on that today ... how I hope it helps with all the fluid in her belly, groin, feet and legs area too.

She's also spilling alot of sodium, more than what they can give her in her TPN. Unfortunately, they had to put her on this gross tasting liquid medication three times a day starting today. She hates it so we mixed it with some grape juice and she sucked it right down.

We're going to ask if we can get her out of here tomorrow for a couple of hours. If she's still in alot pain I know they won't agree so we're hoping and praying that she does better tonight and will be more like herself tomorrow.

THANK YOU for all your prayers, cards, gifts, phone calls, support and love. Despite what is happening in our lives we are hanging in there and we know through God everything is going to be just fine.

Love, Cindi and Hannah
06/26/2004
 What a wonderfully blessed day this was. The Lord is really working and the results are becoming obvious more and more everday.

Hannah woke up just in time to go down for another chest x-ray and as soon as she got back we left for another "pass day"! Hannah walked all the way from her room to the parking garage on the second floor. It was not easy but she kept pushing her walker and put one foot in front of the other. I was so proud of her I couldn't help but cry. Wow!

After our visit Hannah decided she wanted to go to Target to get some Polly Pockets with her gift money. I couldn't believe what I was hearing. We had to put her in the wheelchair ... she had done enough for one day. She was perky and happy and even smiled a little bit. Every word that she spoke reminded me of the sweet little angel she was before getting sick. We took her back to the toy department where she got a Hungry, Hungry Hippo game, a Polly Pocket set, and an art set. Mommy took her over to the pajama department to try and find something that would fit over her big belly that wasn't too tight or too long ... we found a couple of things and then Hannah was ready to go. Through the store Hannah would say, "Hey look Mommy ... isn't that cute"!

Are you ready for this ... she wanted an Icee so Terry took her up to get one and when they came back Terry was grinning from ear to ear and I seen why ... Hannah had just took a bite of a hotdog! It was only one bite though, her tummy started hurting. First piece of "real" food in 5 weeks and she asked for it! Thank you, thank you, thank you Lord!

When we got her back to her room her nurses were all over her hooking her back up and giving her med's and trying to get her to tell them she was in pain and needed all kinds of morphine "bonus'" ... they were quite surprised when Hannah declined and said she didn't need anything because she felt fine. Her vitals were all good, no fever either.

Hannah is being healed and God is working in a "mini" way. We gladly accept his plan and give him all the glory. It's a very beautiful and exceptional experience we are living each day and Hannah continues to stay strong and determined.

She is sleeping right now and is still not on oxygen and stating at 98-100% and her heart rate is in the 130's this evening. That's pretty darn good considering the day she's had.

She was so cute sitting up in bed tonight playing with her Polly Pockets and even cuter when she started drawing a picture. It only lasted 20 minutes and she lost interest or was too tired but we know it's a beginning to a new life for all of us.

Please realize what your experiencing as you read these updates is a true miracle. It's awesome - God is good.

All our love,

Cindi and Hannah
06/27/2004
 I am so happy to send you this update. This is the best day that Hannah Grace has had in a long time.

She slept good last night and was only up once to go potty. She drank so much water and juice and herbal tea that she was "floating". Her vitals were perfect and there was no fever. She's still breathing perfectly fine on her own and her heart rate is still in the 130's and sometimes will dip into the 120's.

The first pigtail wouldn't drain at all yesterday or today and the new one would only drain a very little bit. I was getting worried about it and her night nurse and I were talking and she told me about her little niece having pneumonia and having massive fluid in her chest ... one day the body just started absorbing it on it's own. I'm sure that must be what's happening with Hannah too!! God is working so many "mini" miracles with her that sometimes their so little that I accidentally overlook them.

So after our second "appointment" with her new doctor we asked Hannah where she wanted to go and first she said The Magic House but changed her mind and decided on the zoo since there was no sun out. We left the hospital at 11:00 am and didn't get back here until 5:30 pm!! The nurse had given me Oxycodone to give her just in case she started having pain and I asked her a million times today to take it but she refused saying she had no pain and didn't need it! She stayed in her wheelchair the entire time and we tried to keep her inside the air conditioned buildings as much as we could. She loved the bird house's the best. WE were getting tired around 4:00 pm and said we should head back to the hospital and she said NO she wanted to go to the children's zoo and get some nectar in a little cup so she could feed the birds. Terry, Lisa and Hannah are all standing there feeding their birds and the birds are sitting on their hands and I'm holding all the stuff and standing back helping so they could all enjoy this time when all of a sudden a bird pooped all over my arm! Yulk!! When the bird done this I flung my arm up in the air and accidentally hit Hannah's arm and she was holding the cup of nectar and it spilled all over her shirt ... needless to say it was time to go at that point.

While at the zoo she tried to eat a snow cone and got down about 10 bites ... then had a slushie and ate 3 or 4 bites of that ... but no food.

She amazed us because she didn't even get tired. I asked her if she wanted to go home or back to the hospital and she surprised me and said the hospital. I asked her WHY and she told me that they needed to shrink her tumors before we left. I asked her if she remembered our conversations about the treatments her doctors were offering her both here and Cardinal Glennon and she said NO. I'm not sure what she meant by that!

After this big day I asked Hannah if she was going to keep her promise and walk from the parking garage back to her room on the floor and she did without any kind of an argument! When we got to the room I was sure that she would want all kinds of pain med's that she was due for and she told the nurses NO! They really wanted to give it to her anyway but I said NO. She was without anything for 8 hours ... and that's just unbelievable. When we got her in bed for the night she didn't fall asleep either ... not until 10:00 pm! She wanted to watch some television (she likes the Cosby Show reruns)!

When we arrived back to the hospital we found that we missed lot's of visitors while we were gone ... Darn!! I guess for now you should call before you come or just wait until the evening (after 6:00 pm) before you venture out. I would hate to miss anyone again.

What an amazing child. What an amazing day. Such an amazing God. Thank you Lord.

Love, Cindi and Hannah
06/28/2004
 I forgot to mention our cell phone numbers to call before coming up ... mine is XXX-XXX-XXXX (email Judie if you need the numbers) and Terry's is XXX-XXX-XXXX.

Also, my cousin Judie will be posting our zoo picture on Hannah's website and that is www.aylajane.com

Thanks and have a great day ... we are on our way to having one!

Love, Cindi
06/28/2004
 "Hi Cindi, We're SOOOO glad to hear that Hannah gets a miracle from God EVERY DAY. Keep the faith.God knows you believe in him. He won't let you down.

I am having a benefit for Hannah at the bar where I work. I want to know if you have a couple of pictures of Hannah before she got sick that I could have for a poster that I'm making.Also If you know of anyone who might have something to donate they can call my cell phone XXX.XXX.XXXX (contact Judie if you need the number).We are going to have a rummage sale and raffles and sell B-B-Q plates.The benefit is July 10th.

I'm going to try to visit on Friday unless my daughter goes into labor.We'll talk more then.

GOD BLESS and KEEP THE FAITH LOVE AND PRAYERS, Denny"

I am going to try and have Hannah at this benefit on July 10th ... if you can make it I know Hannah would love to meet you. Denny told me to let everyone know if your interested in helping her you can reach her at her cell phone number listed in her email. She said to feel free to contact her anytime!

Thank you,

Love, Cindi and Hannah
06/28/2004 - Monday Update … Amen
 I'm so happy to be sending this email. First, I have to tell you all the glory in this amazing story goes to God.

This morning we got up and out of here by 10:00 am for our daily pass and appointment. Hannah looks forward every day to getting out of here. I think it's getting easier for her to put one foot in front of the other.

Somehow, I knew this was going to be a monumental morning for me but I didn't know why. We met with a lady named Julie who specializes in using our body's energy to promote healing. After Julie explained how this process works and what her relationship with God was, we decided to allow Julie to pray for her. Inside Julie's "office" there was music playing that I immediately recognized by Robin Miller "Angels" that I have at home. I love this CD and it has always moved my spirit when I listened to it. Hannah refused to lay down on the bed and chose to sit up in a chair instead. She stood up and pulled her chair in so she was closer to me and Julie ... Julie said she was closing in "the circle of love". The room was so beautiful. There were many breathtaking pictures and portraits of Jesus standing with his arms open and white light around his head ... portraying the energy we all have around us. There was a candle lit and I asked if we could turn off the light. Hannah immediately fell asleep and I asked Terry to pray as I did for Hannah. Within 10 minutes I felt this overwhelming feeling (that I can't explain) and started crying. I continued praying and asking for guidance and strength and suddenly I had this vision. It was as vivid and clear as anything I've ever seen. What I was seeing was alot of distorted white and I felt like I was going upward ... I couldn't see my face but I assumed it was me that was holding Hannah in both my arms. She was unresponsive and I was handing her to Jesus. He was standing right in front of me. I remember starting to cry very hard. After Jesus took her from me I was sobbing. Then he handed her back to me. I didn't open my eyes because I didn't want the vision to stop. That was it though, that was all I seen. I felt this warmth inside that I can't describe. It felt "cleansing" and I'm not sure of who's body it was (mine or Hannah's). I couldn't stop crying no matter how hard I tried. Terry sat next to me and held my hand. I will never forget this fantastic image and I want so much to describe it to someone who could paint it for me ... I'd love to hang it in my house.

When Julie was done we woke Hannah up and came back to the hospital. Hannah said she felt no different, but Julie said she could tell there was "cleansing" of her kidneys and lungs. Julie wasn't given any information of what was wrong with Hannah. Besides the enormous tummy that we told her was cancer. Through the cleansing she knew there was problems with the left kidney in particular (she has the tube in this one) and she also knew of the lungs, left in particular. She told us that the energy was different in the abdomen area and she worked hard but told us sometimes it takes alot of time and work in this area to notice any changes. She gave Terry and I some ideas on how to do this in a very small way for Hannah at home.

When we got back to the hospital her Dr. came in. He took the time to explain to us that there was no explanation why Hannah was alive. She shouldn't be from a medical stand point. He told us the tumors are definitely NOT growing and that she WAS getting better and in fact was going to be sending her home in a couple of days ... without hospice and without any tubes. He told us that he knew the excruciating decisions we were struggling with but that everyone of them were the right ones for Hannah. He told us to keep up what we were doing and sometime maybe we could share with him what we were doing. He knows we have sought the advise of a nutritional expert and are giving her only natural healing products and of course that we have been praying asking for a miracle. Terry seemed a little offended when he said, "It makes me wonder why this didn't happen for her along time ago and why this doesn't happen to other kids". It was a very sincere statement and I could tell it was his heart that was asking.

There is so much more to this story but it is late and I have to get Hannah up and out of here early in the morning for our next appointment on our day out. She wanted to go to the Magic House today but I could tell she was so tired ... and I'm glad we came back to the hospital because she has slept alot. She was so tired that when our dear friend "Goofy Sandy" left she couldn't force herself to get up to show her Puff Daddy!

Please thank God for allowing this miracle in this precious child.

Love, Cindi and Hannah
06/29/2004 - Prayer Request
 To All Those to Whom Hannah is Beloved:

I would like to ask everyone who is interested to join in a group prayer on Wednesday, June 30th, at 8:00 p.m. Wherever you are at that time, please offer the following prayer or one of your choosing. My hope is that our combined love and prayers may be much more powerful than our individual ones.

Dawn Beckwith
Hannah's cousin

Dear Lord:

Thank you for your many blessings, for the love of family and friends and the good fortune to walk this beautiful earth. We offer you all of our love, our complete faith and our heartfelt prayers. We have complete trust that you know the way and that you know what is best for each of us.

We join together in spirit today to ask you to send your healing touch to our most beloved Hannah Grace. Please lord, wrap our Hannah in your loving arms and send her out to us again renewed and free from cancer. We ask together for the tumors in Hannah's abdomen and lungs to grow smaller and then disappear. We ask in your name, lord, that our faith and love be channeled to Hannah in the form of healing energy and that she be made strong and whole through your grace alone.

Lord, we owe all that we are and all we believe in to you and we surrender this choice to you in faith.

Amen
06/29/2004
 We continue to have good news!

Hannah and I were off this morning on our own ... no daddy to help load her in and out of the car. She was not happy and was hysterical about everything. She was so extremely tired this morning after her appointments that I decided to bring her back and put her straight to bed. She slept in a deep sleep for a large percentage of the rest of the day.

During her healing prayer session today she refused to lie down and get comfortable ... she chose to sit up in a hard chair again. I met Julie's sister today, her name is Mary Jo and she is fantastic also. She explained more about the process and how it works and it is all so fascinating. When I'm in the presence of Mary Jo and Hannah I feel this direct connection to God. After praying for only a short time I once again had a vision. I was in the same place as I was yesterday and I thought it was Jesus standing higher than he was yesterday and I was standing off in the background watching him ... all of the sudden he jumped and his arms went out to his side and I thought he was going to fall ... when I seen his arms turn to wings and he started flying back up ... then I seen another figure who was flying up and down in the opposite direction and I realized they were angels. I don't know what the significance was ... but it was beautiful.

The rest of the day we visited with lot's of company. A lady we've only "spoken" to over email for this past year came up today and we finally got to meet her! She's been so supportive and has been with us through thick and thin ... always offering to do more and help more than anyone I've ever known. Then Mary Ann and her daughter Amy came up to visit and this time brought Hannah a Betta fish and little fishy house for them. Hannah didn't say hardly anything to them ... but when she was telling Papa good night she was so excited and wanted him to know she had a "new baby" to take care. Yes, it's right here in her room just swimming and having a good time. Hannah says it's a boy and since he is a beautiful dark blue she has to think of a name for him.

Because of the problem with low sodium and Lacix her renal (kidney) doctors decided to try a drug tonight called Albumen (sp). After the Albumen they "flushed" her kidneys with Lasix. I don't understand too much of why they decided to try this so I'm going to ask her doc's to spend more time with me explaining what the purpose is. But I can tell you that she has never had so much urine in her neufrostmy bag ever! It's incredible where it's all coming from.

We had another consultation today with her doctor, nurse practitioner, social worker, chaplain, and child psychologist. Terry was sweating just knowing they were all in there to tell us something horrific. Turns out they just wanted to discuss sending her home Friday. She hasn't had the IV morphine drip since this afternoon and she's doing great. She's started spiking fevers and they get very, very worried about that. They immediately start her on antibiotics and want to give her Tylenol. Off and on all day today she's been doing this. During the meeting this evening it was so neat to hear them talking about sending Hannah home without hospice and to LIVE instead of to DIE!

I'm so exhausted tonight that I can barely keep my eyes open to type this email. If I've missed anything I will catch you up tomorrow. I know there are tons of emails that I need to answer and I promise I will ... real soon.

God is so good. We praise him and give him all the glory for this remarkable child's life.

Love, Cindi and Hannah
06/30/2004 - Hannah Benefit
 Hello Hannah Friends,

Due to the overwhelming response to the Hannah benefit, the date has been postponed till Saturday,July 24th in order that everyone who wishes to help will have more time to prepare. We are looking for donations for the rummage sale,raffles and auction.We also need donations of food for the B-B-Q. And volunteers to help the day of the benefit. If anyone has media connections,a newspaper add would be helpful.Also T.V.news or Radio airplay would help spread the word . We welcome ANY ideas you might have to help raise $$$$$$ for this cause.

The address of the benefit is 7900 Michigan St. Louis ,63111.It is a small neighborhood bar with a beer garden. There is no room for storage so we ask that donations be brought the morning of the benefit starting at 8:a.m. That will give us two hours to set it up.

This started out as a small idea but thanks to everyone who loves Hannah, my small idea is becoming a GIANT. Thank You!!!!!!! Lets make Hannah proud!!!! You may contact me at denny_gayle_robbins@yahoo.com or 314-805-9886.

Have a HAPPY day,
Miss Denny