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July 2004
07/01/2004
 After 6 and 1/2 weeks Hannah is coming home tomorrow! What a HUGE relief it will be to get her back in her own surroundings. She told me she wasn't sure if she would sleep in her bedroom upstairs or kick daddy out and sleep with mommy downstairs. I'm thinking the latter.

I was able to get her out of the hospital on a pass both Wednesday and Thursday. Both days though she has been having alot of groin and leg pain so I haven't been able to take her anywhere else. I am concerned about the pain and have mentioned it to both her doctors and nurses and Dr. Hyashi said this morning that he thinks it's coming from a nerve. Her legs and feet are so swollen ... it's just awful. Her renal doctors are trying to find the right combination of diuretics and Albumen to rid her body of the fluid and retain sodium in her blood.

She continues to run fevers off and on ... nothing major though. She'll spike up to 102 and within 15 minutes she will (without Tylenol) come down to 100.2 or so. They have her on antibiotics and continue to culture her blood ... but everything continues to come back "no growth".

She continues to have daily chest x-rays and they continue to be the same ... no change. It's questionable right now if she will go home with the chest tube or if it will be left in for me to flush while at home.

I started packing things from her room today and brought a "load" home and only got about half of it! She has SO much stuff ... it's unbelievable how many people love Hannah and have gone out of their way to shower her with gifts and cards.

I was so tired that I came home tonight ... had to make sure everything was ready for Hannah to come home to. I sat down on the couch and didn't wake up till midnight. I know there are so many emails I need to return and I promise once Hannah gets home I will get back to you.

I'm uncertain how to even begin to say thank you for the love and support you've brought to my family. Please continue to stay close to us ... we've been told the hard part is ahead of us. I can't imagine that, but I will continue trusting in the Lord and I know he will see us through. Someone sent me an email not too long ago that said ... "If he brings you to it he will bring you through it". Amen.

I was looking at the calendar tonight to count the number of days Hannah's been in the hospital. It's the River of Miracles calendar and the month of June features a fantastic picture of Hannah with Vic and Trish from "101.1 The River" during last years fund raiser for Children's Miracle Network. Just under their picture there's a caption that says,

"Everyday, thousands of astonishing miracles occur at our two hospitals".

Hannah is living proof that this quote is absolutely true. Thanks again for everything and now that we're home please free to call me there ... the number is XXX-XXX-XXXX. (contact Judie if you need the number)

All our love,Cindi and Hannah
07/03/2004
 We finally got home yesterday around 6:30 pm. Everything takes forever it seems. They decided to give her a blood transfusion before we left. For the first time Hannah had a "reaction" to someone else's blood.

When we got home Hannah started having to go pee every 10 minutes ... I'm not kidding. Terry went to bed around 11:30 and I stayed up taking her potty. I was exhausted and for the first time started getting frustrated with the situation. I woke Terry up around 3:00 a.m. and asked him to take over so I could sleep. This morning when I woke he looked like I did, awful. He told me Hannah started having blood in her urine and one time it was "alot". He was scared and worried. I took her for the rest of the morning and she only had a little bit. She had an appointment at 11:00 a.m. so Terry took her. He called me from a gas station all shook up! Hannah had a BM accident and was really bleeding alot. Poor Guy!! I called and spoke with Dr. Jones and she said we could just watch it and see if it cleared up on it's own. If we wanted to we could also come in through ER and have Urology look at her and have her counts tested to see if she needed platelets.

So we are watching her very close right now. The bleeding has stopped and only returns as "pink" sometimes. She hasn't had any fevers and continues to complain about her groin area. When she sits up the groin doesn't hurt ... it's odd how it only hurts when she lies down.

It's so funny to have her home on the couch barking orders and telling everyone what to do and how to do it! I cracked up awhile ago when she bossed Terry around, getting her exactly how she wanted to be and after he did exactly what she wanted and was all tucked in Hannah said, "Now give me the remote and get out of my face"!

Sissy's been up all day today and when Hannah would doze off she would change the channel to something besides Sponge Bob and Hannah would wake up immediately screaming to change it back.

My sister in law offered to come up tonight and spend the night so Terry and I could get some sleep ... but Hannah refused because nobody can take her to the potty like mom and dad ... bbbrrrr. She might not get her way about this one. She's only slept 3 hours since coming home yesterday! That's not good ... she needs more rest.

So, we're holding tight and praying hard for guidance and wisdom to know what's best for Hannah. I know you'll join me in prayer as well.

Love, Cindi and Hannah

07/08/2004
 I know it's been a while since I've sent an update ... but life around our house is very hectic right now. Taking care of Hannah is a full time job for both Terry and I! Trying to stay ahead of all her nutritional needs, medical care and doctor appointments is impossible! She requires constant care and Terry and I are taking shifts in order to care for her. We don't mind though ... she's at home with us!

Trying to find time to take care of my house, groceries, laundry and bills is another story! Being gone for 7 weeks makes for a big mess around here! Terry is doing all he can to try and catch up with the yard and house but we aren't getting very far. When we brought Hannah home from the hospital it took two entire car loads to bring it all home. I haven't found any time to even touch any of it. It's taken over my whole house! I must do 3 loads of laundry everyday ... and that's with Lisa's help. She came over yesterday and spent the day helping Terry with the yard work ... they didn't get very far though. Lisa spent the night and got up this morning and they were back at it again. Because I need so much of Terry's help they don't get much done.

On the 4th of July Hannah was so tired ... but still wanted to do something. We told her what all she could do and she decided to go to her Noni's house (Terry's sister). They were shooting off fireworks at her house. Hannah got to hold a sprinkler and had fun for a short time.

We stopped giving Hannah TPN the second day after she came home. She's done so good without it, but it still worries me. She looks so thin, through the face especially. Her nutritionist tells us she'll turn around, to be patient. Her appetite has been coming back. Last night she asked me for a chicken potpie and I cooked her one ... she ate one bite of it and said she didn't want anymore. She's been picking on a little bit of fruit ... but says that doesn't sit well either. Today we cooked her some mashed potatoes with Soy Milk and she ate about 6 bites of that!

I took her outside this evening (in a wheelchair) to look at the garden her and Papa worked on before going in the hospital. She was surprised to see how big everything was. The watermelons look great!

When she was outside this evening I looked around after 10 minutes or so and all around her were her 6 cats and 3 dogs. She doesn't want anything to do with them yet, she's afraid they will hurt her. But they sure love her.

According to all her blood work, her counts are good ... except her darn Sodium! We are going to make her sit down with a bag of Lays potato chips and eat away! Just kidding Byron. Her sugar was beginning to fall off a little too. Everytime the doctors find a problem her nutritionist has a natural healing remedy to fix it. It's amazing to us.

I want to thank all of you for once again stepping up to help with the benefit. I know how much work is going into this and we really appreciate it. I'm hoping that Hannah will be able to be there, even if only for a short time.

Please remember that no news is good news. If I'm not returning calls and emails it's because there hasn't been time to. Please know we will get back with you just as soon as we can!

Thank you for all for everything!

Love, Cindi and Hannah

07/11/2004
 Hannah started getting sick Saturday afternoon. She started with diarrhea in the afternoon and by evening I knew something was wrong. I took her temperature and she was only 96.0. She was also pale and very "unruly". It was a hard decision to take her to the ER ... but when I called and spoke with her attending about the low temp. she said to bring her right in ... she was sure she was dehydrated. So was I, despite our successful attempts to get her to drink plenty of fluids.

When we got there Saturday night her heart rate was in the low 140's, her oxygen was 98 - 99 (because she was screaming about everything), and her blood pressure was great! They immediately drew blood and the supervising ER doctor was very upset ... Hannah's white blood count was over 41,000!! That's approximately 4 times higher than yours and mine should be. Her segs and bands were such that they knew she was fighting an infection and were pretty sure it was from bacteria. Her other counts were good though ... except the sodium (which is a constant battle). When Terry took her into the clinic Friday her sodium was up from 120 to 123 ... last night it was down to 117 (which is dangerously low). There's a great concern of seizures at this low rate. While in the clinic Friday they took blood cultures and urine samples and both of them were fine ... so they were assuming there was something else going on. Naturally, they admitted her ... Terry was not happy. It''s very difficult to treat Hannah with Natural remedies when she's in the hospital and they support her using the exact things that her nutritionists tell us not to give her.

All Hannah's Oncology team know what we're doing with Hannah at home and they respect it ... not saying they agree completely with it, but they tell us they do want to work with us. As luck would have it, the fellows and residents that are very familiar with Hannah have now left and gone to another floor ... I hate that!! They rotate once a year ... just our luck.

While in the ER they took a chest and belly xray. The chest xray showed no change from her last one and the belly xray showed no changed from the one she had 20 days ago. However, the belly xray 20 days ago showed bowel loops that were questionable ... meaning there was concern of a blockage. I assured them after what Hannah experienced there was no way this child's bowels could be blocked! They told us there could still be a partial blockage ... and they needed to make sure before going any further. Which is fine with us ... EXCEPT ... that means she's NPO, she can't eat or drink anything! Hannah is on a strict regimen of nutritional supplements and cannot miss any doses ... so there was a battle of the wills about that. I let Terry fight it, I'm much too exhausted anymore. They told him they want her to remain NPO (even though she's terribly malnourished, and dehydrated) just in case they need to do more tests or do surgery. I thought Terry was going to have a heart attack when he heard that. The resident went on to say that it was typical that children remained NPO for many days, sometimes 3, 4, and 5 days. We assured them that would not happen with Hannah. If she doesn't go down for more tests tomorrow she will start back on her nutrition ... like it or not. So they may kick us out tomorrow.

One terrible worry I've been having for the past few days is about her diminished mental capacity. Not only does she look horrible but now she's acting just awful. When I say her name she sees and hears me but it takes her a little longer to respond ... sort of like someone who has had no sleep for days, or someone who's had way too much too drink. Her behavior is also alarming. She's started this awful habit of "picking". Her little fingernails are down to blood and the skin around them bleed all the time. It's like she's obsessed with "picking" everything! She had a little tiny sore on her head and she picked it into this large bloody sore now. She's done the samething to her arms and legs. We've had to resort to putting gloves on her hands. When we're not looking she'll take them off and look right at us and tell us that she isn't going to put them back on no matter what we say. This is not my Hannah at all. She isn't thinking before she speaks, she just says what comes out of her mouth, and she even speaks with a slur. And it breaks my heart. When we were in the ER last night the doctor was examining Hannah and her finger was on her stethoscope and Hannah's belly ... Hannah picks up the doctor's finger and is enjoying herself while she picks a scab off! When the doctor is finally able to get her finger away from Hannah ... she starts screaming at her to give it back because she wasn't done picking it! Hannah picks till she bleeds and doesn't care ... it doesn't seem to affect her at all. The doctor thinks it's because all her electrolytes are out of whack because of the dehydration. It brought back alot of memories for me, when Lisa was waking up from her brain injury and wasn't herself either ... that was very, very hard. I came home late tonight to try and rest ... my mind as well as my body.

Denny tells me she's getting alot of people interested in helping with the benefit. Thank you all very much for all your help. I'll be sending out the flyer sometime later today and hopefully you'll be able to print them and have them available for whereever you think they should be posted or passed on. She is looking for volunteers to help with specific tasks also. Denny also thought we could post it on Hannah's website, so look for it there in the next day or two.

Thank you all very much for all your help. There's no way I can possibly handle all this work with Hannah ... it takes both of us full time and we aren't able to come up for air yet. I'm praying it's going to get easier soon. Terry and I are both very tired.

Love, Cindi and Hannah
07/13/2004
 Hannah continued to have severe diarrhea both Monday during the day and all night last night too. She took a break for a big part of today but started right back up this evening. I can't imagine where all of this could possibly come from ... I was hoping maybe necrotic tumor.

This morning they surprised me whey took her down for a CT scan. She had to drink contrast and she didn't fight it too much. I had butterflies in my stomach and finally I asked the resident to read the results. She's never had Hannah before so she is not familiar with her case, however, she said between her and an intern in Radiology it did not appear to be any new tumor growth ... nor did it appear that there was any less tumor.

Hannah looks even worse today. I wasn't sure that could be possible when I looked at her yesterday. She's been trying so hard to get up and go to the bathroom when the diarrhea strikes, but by this evening she couldn't. She couldn't make the steps from her bed to the potty. The swelling is worse today and it's hard for her to breathe. I took her out to the garden around midnight and when we came back in I was putting her to bed and noticed all this fluid seeping out her legs! Her nurse called the resident on duty and she looked at her and paged the Fellow on duty and decided that her electrolytes weren't stable enough to give her any diuretics right now. The fluid is so bad she can't lie in bed without the head of it being propped way up as if she was sitting in a chair. They did notice some "crackling" in her lungs today and told me it's from all the fluid in the chest cavity. She's been complaining of alot of chest pain and I'm hoping this is the cause.

Dr. Hulbert told me last night with her sodium level so low that if it was her or I with a level that low that we would be having seizures. But Hannah is Hannah and the doctor doesn't know why she hasn't yet. I asked about giving her natural Sodium and the risk of that is raising the level too much too soon ... the level must be brought up slowly or there could be another set of problems. They are cutting way back on the fluids they are giving her ... for example, no more drug on a drip, only in pill form now. They asked us to cut her way back to a very minimum too. We thought we would continue her on her regime but lessen the amount of water and prepare her nutrition more concentrated.

Because Hannah is so malnourished it was decided to put her back on TPN temporarily. Today it was decided that what's going on with Hannah could be caused by a condition that has a name but I forget what it was. This condition causes the body to retain fluids in certain parts of the body and there's no guarantee it will ever be corrected. The answer to this problem is to RESTRICT fluids. Great! Since coming in the ER she has received a ton of fluids ... no wonder she is so huge. They aren't positive yet that she has this condition yet, but their headed in that direction.

Hannah's behavior hasn't gotten any better. Now she's started picking at my body. She's got little band aids all over her and her fingers by the nails are so red and picked ... they look awful.

Last night she was lying in bed and it was real quiet, just the two of us. I told her I wanted to run down to the cafeteria before they closed and that I would be right back. She told me no, she didn't want me to leave. I asked her why and she told me "because". I asked her if she'd like to come with me and she agreed! Before I got her up I told her I was surprised at her for not wanting me to go down by myself ... this is what we do all day everyday. We continued talking a little bit and I knew there was something more she needed to tell me. Then finally she told me "because I'm scared". I asked her what she was scared of and finally she told me ... "of dying". Oh my gosh!! How it physically hurt me ... just knowing this child would be thinking these thoughts. Oh my Hannah! I took the time to explain to her that there was nothing to be afraid of, just as I have since she was little. She looked at me and told me she knew ... but what I finally got from our conversation was that she didn't want to die alone in the room by herself. I guess she realizes how very sick she is right now.

Today I spent some time explaining to her that she has got to start eating, her body had to have more natural nutrition than it was getting. She nodded her head at me and I'm sure she understood. She told me she would try ...

Later tonight, around midnight again, she asked me if I wanted to go to the cafeteria for something ... I jumped at the chance and asked her if the reason she wanted to go was to try and find something to eat, she told me, "No, I just wanted to offer in case you did". On the way down I asked her to just think about eating something and to try and remember everything they have at the cafeteria. She finally decided to try a vanilla cone dipped in chocolate ... the employee "double dipped" it just for Hannah too. I was disappointed after 5 or 6 bites that she cried her tummy hurt and couldn't eat anymore.

I'm not sure how long things are supposed to be like this before we see any improvement, but I'm sure hoping SOON! From lifting Hannah my back is out and I can barely keep my eyes open.

Take care and God Bless,

Cindi and Hannah

07/15/2004
 I'm afraid I don't have good news for this update. Our little angel has taken another turn for the worse. She still continues to suffer with the diarrhea infection, CDIF. Despite antibiotic treatment and natural treatment she is still miserable.

The swelling in her legs and abdomen hasn't changed at all. Fluid is still seeping from her legs. She was walking a couple of steps to the bathroom, but now it hurts her so much she would rather use a diaper than try and make her way to the potty. THIS is not my Hannah!

She can't get comfortable anymore. There is no way she can lie down. The fluid in her chest is causing alot of pressure. She tells us her back hurts her too. She tries to sit up to sleep and she does get some sleep, but nothing like the deep sleep that I know she needs.

She still has the "raspy" noise in her breathing. It's the fluid in her lungs. Last night it broke my heart to have to put her back on oxygen, but we had no choice. She remains on it today. It's gotten so hard for her to talk that she has to pause between every word. She's getting hard to understand when she talks. When she sleeps in her bed she has to raise both of her arms over her head, just to get any deep breaths.

Probably the worst part is how she looks. Her eyes are sunken way back in her head. She hasn't any cheeks, you only see hollow cheek bones. Every vein in her body sticks out because there's no weight on her body anymore. She still hasn't ate, even though she tries so hard to!! Under her eyes she has these deep wells and all around her eyes she is red. There isn't enough weight in her face for her to close her lips so she always has her mouth open. To me, she looks like she is very near death.

Since seeing Hannah become so thin Terry and I have really been pushing more of her nutrition. It's nothing but a constant battle with her though. Terry can't stand it and gets very upset which in turn upsets everyone else. He feels it's his place to make her eat and is taking it hard that she won't without a major fight. Alot of the time he'd rather be home than here because it's just so hard. I took over the feeding and nutrition and she responded to me better than she did with Terry. She isn't thinking straight and it takes awhile for us to explain to her and for her to understand what we're talking about.

Tonight I spoke with Dr. Hulbert about Hannah's recent CT Scan. Terry refused so I went by myself. I looked at all the scans on the computer screen with her and we were able to cut the screen in half and view the last one to the recent one. Clearly, there has been no new tumor growth in the abdomen. That miracle still stands strong! However, it was the CT Scan results of the chest that made my heart hurt. The test shows the masses have clearly grown in size and there are more of them now. Tumors pull fluid all around them which explains why she has so much in her chest cavity. Dr. Hulbert showed me the bowels in the abdomen and it appears that there is a beginning of a partial bowel blockage. Dr. explained that this would be fatal to Hannah. No possibility of surgery at all. There's also a good chance of Hannah getting an infection, which also would be fatal for Hannah. Because of her weakened condition and amount of disease Hannah wouldn't stand a chance if anything happened to her right now.

Dr. Hulbert expressed to me her great concern over Hannah's lung condition and breathing. Once again she wanted to discuss with me the end of life decisions she thinks is so important. Once again I explained that I would not have that conversation with her. She is so confused, she doesn't understand us very much. She asked us if she could speak with the chaplains we were so close with at Cardinal Glennon, just so they could help her help us. The chaplains at Cardinal Glennon know the reality of children dying and are very familiar with dealing with families at a time like this. I assured her they wouldn't mind at all.

I was very upset after leaving the conversation with Dr. Hulbert, I tried so hard not to be emotional in front of Hannah, but I couldn't help it. I was kneeling down in front of her and looking up at her when she opened her eyes. She looked right at me and saw the tears coming down my cheeks. She was waiting for me to say something but I couldn't. When I seen her face this time I seen what the doctors were seeing and it crushed my heart. There's no doubt about it ... Hannah is very close to death right now, very close.

After a few minutes Terry started getting her juice and tea ready and once again she was fighting him about taking it. She just couldn't make herself do it anymore. With the TPN being stopped today I knew if she didn't take the nutrition we were giving her that she would be that much closer to death. I couldn't take it anymore. This brave, strong little warrior is in the beginning stages of giving up. There was no way we were though. In the middle of all this I asked Hannah if she would like to go out to the garden and she gladly agreed. She is getting tired of these walls! She did agree to try some kind of a fresh fruit drink from the cafeteria and told Sissy to go get both her and Sissy one and then to meet us out at the garden. Hannah has been hungry, her tummy has been growling, and she has an appetite. Her problem is not the taste at all. It's the "agreeing" with her. This morning she had company from the Friedman family, (Shelley, Paige and Erin) and Colin and his dad. Shelley has always been on this mission to find things that Hannah would eat. Bar none either! Hannah told her company she wanted a chocolate donut and Shelley and Colin's dad were on their way. They came back with a chocolate long john donut and by that time she didn't want it anymore.

I knew Hannah was giving up and her will to live was beginning to lessen. My heart was sinking and I was having a hard time breathing. I knew she could only fight so hard and hold on so long - but to see her actually doing this was more than I could bare. After Dr. Hulbert's conversation and Hannah's refusal to take her Med's I felt like it was time once again to take a necessary step ... and I also knew it wouldn't be easy!

Hannah, Terry and I met Lisa upstairs on the garden around 8:30 pm. Sissy brought her strawberry drink and fresh mashed potatoes with brown gravy (an old favorite of Hannah's). Hannah wouldn't drink or eat any of it, once again she had changed her mind. Terry had brought upstairs some Ambrotose mixed in grape juice for her ... she refused that also. We told her that if she didn't eat or drink something she was going to die. She did eat a little bit after that.

I looked at her, I mean really looked at her, and began to cry. I decided to have a talk with her and free her if that was what she truly wanted from us. I explained to her that she was sicker than she had ever been and without God's intervention she was going to die in as little as a matter of days. Oh, that was hard! She never said a word, she just listened, really listened. I asked her if she realized just how sick she was and bless her heart she told me she did. I wanted her to know that it was ok not to fight anymore, really ok. I told her that there was nothing to ever fear by making the decision to stop fighting and let go of the pain and suffering ... to let go and let God make the decision to intervene once again. I told her all the things that I thought a mother should tell her dying daughter. I asked her to talk to me and finally she did. She asked me what I thought about her decision. I told her that I loved her enough to let her go. I also told her that I would miss her terribly but that she should know that we would be together again. I told her that it was her decision alone to make and that I would love her no matter what decision she made. Then she said she wanted to know what Sissy thought about her decision. I think Hannah was looking for direction and making sure that her decision wouldn't upset anyone. Lisa got down on her knee and took Hannah's hand and through tears told her she loved her very much and thanked her for being the extraordinary child she was. Then she also freed Hannah and told her to make her own decision. She assured her she would only respect whatever Hannah's desire was. Hannah was studying both of us so intently. Terry had walked away to have a good cry and when he came back she looked at him and I thought she would ask him what he thought about her decision ... she didn't, she was much too exhausted. So I asked for her if she wanted to know what daddy's thoughts were but she surprised me by saying No.

There was much more said between us ... but after lot's of tears and emotions Hannah fell asleep to think things through. She told us she would have a decision before we went back in the hospital. After an hour or so she woke and we were sitting on pins and needles waiting for her to tell us ... and it was so beautiful, I will never forget it. She can barely talk, and she pauses between each word to catch her breath. But she said to us, "I (pause) want (pause) to (pause) LIVE! The word "live" was very loud. Oh, my heart sang! She made this decision based solely on looking inside herself and choosing to continue to fight. Thank you Lord! She started asking where her food was ... she wanted the mashed potatoes and gravy! She only ate 3 bites, but at least she ate.

We came back in her room and when I put her on the potty I had an idea come to mind. I asked her what she thought of a NG Tube. I explained that there would be no more fussing and tasting that yukky stuff .... and that we could get alot more into her little body. She jumped at the chance! She said she wanted it and wanted it right now. I was so proud of her! Before our conversation on the garden there was no way she would have agreed to the tube. Hannah immediately wanted the NG tube and wouldn't take no for an answer! We called the on call resident and she wanted to wait until morning (as usual) and Hannah said no she wanted it now. I asked her to call Dr Hulbert at home. Hannah sat straight up like the brave little angel she is. Not one time did she complain, cry or give anyone a hard way to go. It was awful, this made me vomit right along with Hannah after it was put in. She accepted it and that was that. It was set up and running by about 3:00 am. Hannah smiled when I showed her all the stuff she would have had to have drank in a a bag that was going into her tummy.

She continued to have diarrhea throughout the night, but because my back is out and lifting her is impossible now she did let the nurses help me.

Thursday morning update:

Hannah couldn't get comfortable and kept wanting to sit up and move from chair to chair. It was the breathing ... it's gotten more difficult. We've had to turn her oxygen up and up and her stats are still dropping. It's devastating to watch her right now. I'm a mess, I will admit. They had the blood bank come up and poke her finger to get blood to check gas oxygen levels. They are very concerned now about her respiration. I am so scared.

She hasn't moved at all, she hasn't any energy to. She doesn't care that her diapers full and she don't want to sit up anymore either. She's slipping away and I can't stand it!!

I've been asking for a blood transfusion for 3 days and finally this morning they decided she was so crucially low that they had to give it to her ... possibly two bags also.

Since she is being very restricted about her fluid intake ... and because she has to have blood this morning I was told she couldn't have any of our supplements. It was awful! We asked for the doctor and they sent in a resident (who knows nothing about Hannah) and she told us no. To make a long story short I once again asked for Dr Hulbert. Once again Monica said we could give it to her.

I was mortified when the resident had the audacity to tell us that the problem was the nurses and equipment that are being used to feed Hannah didn't have to be done, that they were doing us a favor! She said that they don't agree with what were giving Hannah and basically didn't have to do what they were doing. That was the wrong thing to say and I told her so too. How rude, insensitive and inconsiderate. I am going to call Home Health and ask them to send their own nurses and equipment up here and we'll administer it ourselves.

Terry got upset and made the decision to take the syringe and fill it up with our food and give it to her himself. I asked the nurse if it would be ok if she "showed" us how to do it but didn't "do it herself". She agreed and now they want a meeting at 4:00 pm today. I can't do it. I can't listen to anymore. I've had no sleep for 3 days and can't stop crying. I guess these are tears they I've been holding in since she came back in last Friday.

God please, you have the power to breathe life right back into Hannah. With one breathe every cancer cell in her body could be destroyed and Hannah's life restored. You've worked one miracle already in this child's life, the tumors in the abdomen have stopped growing. We give all the glory to you Lord. Hannah desperately needs another miracle, you are the only one that can save this child and we know that it is in your plan to do so. We trust, hope and have faith in you Lord that you will grant this special child of yours restored health. We praise you and thank you ... in Jesus' name. Amen.

If anyone want to know what they can do to help it is simply to pray. My family is worn out, I'm a wreck, Lisa has withdrawn and Terry is very angry. We've been holding up so well and doing so good ... it's disappointing at this time to loose our grip somewhat. I know your thinking it's excusable and alright, but it breaks my heart. Please pray for us.

I'll keep you all posted.

Love, Cindi

07/16/2004 - Devastating News
 I'm afraid I have more devastating news. We were told this afternoon that Hannah now has a heart condition, they consider to be fatal. She has fluid on the inside of the membrane sack which holds the heart. There is a procedure to remove this fluid but it is very, very dangerous. They call it "tapping" the chest. They would put in a pigtail just as they did the chest tube. The problem is the fluid that they can't get rid of, despite several attempts. The other problem is much worse ... the right side of the chamber is not working. This of course could cause a fatal heart attack at any given second. Oh my gosh! When the Fellow delivered this news I was beside myself. She told me Hannah was extremely critical and would have to go down to PICU ... her respiration was at a high risk of having a fatal attack at any second. Terry and I felt we had no choice but to allow the procedure to be done.

She left and then came back with a army full of doctors. They asked us to go into the conference room but we declined. We just can't go in that room anymore.We invited them into our room where we were visiting with the Friedman family, and where Hannah was sound asleep sitting in her wheelchair. The doctor from PICU (who is also a Anastegeolist) led the conversation with these first words, "Your daughter is very, very sick. He explained that Hannah was not a candidate for the heart procedure after all. To get the needle in her chest to tap her would mean they would have to intubate her ... and that was impossible. To try and get a tube down her throat would likely be fatal for Hannah. And once in he told us it would NEVER come out. He said there was no way to get a needle near her huge tummy either. I quit listening and looked at the floor. I didn't want to hear anymore. After having no sleep for 3 days I only wanted to lie down and go to sleep. He finally told us that Hannah was in respiratory failure and would die very soon. He didn't know when because it's impossible to tell when the heart would give out.

He started talking about DNR and forms to sign and our wishes. I couldn't do it, I couldn't even think about it. I told them to save this little girls life no matter what!!!

I asked the Cardiac Surgeon for his opinion and he gave it, same as the resident explained to us. I asked for a second opinion and he told me he was over the entire departmemt ... but would get us one.

Bottom line was the same. I became an instant mess again. Just looking at her, how she continues to fight and hang on and be brave and strong! How could anyone who ever had the relationship we've had with Hannah live without her in their lives?

We chose to keep her up here tonight with us. She's oxygenating at 100% and for the first time in a while her heart rate was in the 150's. Still, I pointed out that she was alive, sitting up in a chair and doing fine! He agreed with us too. So we have Hannah here with us tonight in her room. Terry stayed over and I'm not sure if Lisa is coming up here or not. It's going to be so hard to tell her ... and all of you.

To make a statement that Hannah NEEDS prayer and healing would be an understatement. Hannah needs ANOTHER miracle! I'm coming to all of you once again and pleading with you to please pick up where you left off with Hannah in June. Jesus hears our prayers and her life is in his hands. Please, please join me in helping Hannah to receive yet another miracle. This time ... time is crucial because Hannah doesn't have any according to these doctors.

Love and prayer to you all ... God Bless

Cindi and Hannah
07/16/2004
 Terry decided to leave last night after all, and Lisa was too upset to drive back. It was just Hannah and I, and with alot of prompting on my part, I could get her to wake up and acknowledge me with a nod of her head. My sister Becky came up and rubbed Hannah's legs with her favorite lotion ... Johnson's Baby Lotion. Stimulation to Hannah's feet has always been a way to "wake her".

Before Terry left we put Hannah back in her bed. She continued to have constant diarrhea. Just after all the work was done of cleaning her and settling her back in she would do it again. She done this for hours. She got so tired of being moved she told me to stop and just leave the diarrhea on her. Of course I wouldn't.

Terry left and I started bathing Hannah in bed. She didn't respond at all. I would talk to her and sometimes she might grunt, letting me know she was still with me. I finally laid down to rest around 2:30 am. I was so scared to fall asleep ... if she had a fatal heart attack I wanted to be holding her hand. I finally convinced myself with the machines on her that if anything happened I would wake up. After 3 nights with no sleep I was sure I would sleep, but I tossed and turned and prayed and prayed. I got up around 4:15 am and walked over to her bed. I sat down next to her and watched her as her arms were flying across her, like she was fighting with someone. She was making noise that didn't make any sense. Her breathing was terrifying. It was very raspy and I could hear alot of fluid in her lungs. Her eyes weren't right and I knew when she started moving the fingers on her hands backwards that something terrible was happening to her. I thought she was having a stroke and/or a seizure. I had called her nurse to help me change her and she stood by Hannah's bed and watched her 0xygen drop from 90's to 82 to 76 and I started shaking Hannah and trying to wake her! She dropped down to 68 then down in the 40's and the nurse finally started giving her oxygen!! She asked me if I wanted her to get a doctor! A PCP had walked in the room to help us lift Hannah to change her and ran to get someone. Her nurse started to put a mask on Hannah's face and she was fighting it! When she dropped to 36 I ran and got some cold wet wash cloths and started aggravating the heck out of her! I was calling her name and wiping her face and shaking her body, but she wasn't responding!! Her eyes were such that I knew she was leaving this earth and I wasn't having it! I started wiping her legs and arms with the cold cloths and told her she had better start breathing. Just as the doctor came in she started climbing back up.

I know I spoke to the resident doctor but I don't know what we said, I don't remember much after that. I sat back down with her and held her little hand in mine and told her it was ok now, she was alright. I told her I knew she didn't understand what just happened and neither did I, but God was there (not the angels) and more doctors were running in and we would all help her. She looked so BAD! I hurt for her so much. I hugged her and ignored the doctors who were there to talk to me. Then I remember looking at her thinking she didn't look like my Hannah anymore.

I finally called Terry while the doctors checked her out and I knew what they were going to say before they told me. I HATE it when they asked me the same question over and over, "IF we're going to continue trying to save her life" ... I looked at all of them and told them not to ask me that question again! I had answered it over and over again and I was tired of telling them YES! They were all so kind, but I felt like they wanted me to let her go. Almost everyone of these doctors have treated me "different" because I refuse to let her go. There was silence in the room and I told them that they were not God and I wasn't either and neither one of us had the right to make a decision that belonged to him! If God wanted to take Hannah home right now he would and there wouldn't be a damn thing anyone could do about it. And as long as she was fighting I was going to fight too! I think I made my point. I remember some of the nurses coming over to try and hug me and my refusal to let anyone touch me. Then I wondered why I had done that. Maybe because they were strangers, maybe because they weren't the nurses Hannah and I loved so much ... our Cardinal Glennon family. I know as I thought about it later I cried because I really needed and wanted them ... and I wanted them to be the ones who cared for Hannah at that time. I said to myself that it wasn't fair, at a time like this we SHOULD have been with them.

The doctors were kind enough to wait to take her to PICU until Terry arrived. They gave us a little time to be with her alone, before they put her on a breathing machine. I did something she always hated, I laid in the bed with her and hugged her to me. She wasn't aware of anything and I don't think she heard a word we were saying to her anymore but we had things we needed to say to her.

When the Intensivist (PICU attending) came in he just HAD to repeat everything he said the night before. He's a loud guy and all business, he's also cold as ice. My instincts told me he was excellent at his job though. Right in front of the 3 of us, he just had to reminded us that when they took her to PICU and inserted the breathing tube that it would probably be fatal. If she did survive, it would only be a short time before her heart gave out ... then he told us the breathing tube would never come out and she would die with it down her throat. Just like that, very matter of fact.

Terry and I were talking and he was changing his mind. He wanted to let her go ... no breathing machine. I listened to him and tried to see it his way, I really did. In the end he respected my wishes and allowed them to take her downstairs. I was still in my pajama's and had no intention of going downstairs with her. Who knows why? I just felt a need to get a shower (or to be clean) for my little angel. I asked a nurse to put a do not disturb note on the door and to leave me alone for awhile. I made some phone calls, to some of our favorite prayer warrior pastors. I asked them to come this morning. I sat alone in her room and looked at how big it seemed without her bed in it. I looked at all her stuff and it was her pink slippers that I picked up and held to my chest and cried with. I sat alone and looked out her window hugging the slipper and prayed like I've never prayed before. I felt a calmness. My stomach still hurt so bad and with my back out I could barely walk ... but my heart felt better.

After 45 minutes Terry came up to get me while Lisa stayed downstairs waiting to go in and see her. He looked so sad ... and old. He looked so lost and I knew he was looking for direction in what we were doing ... and I felt so awful in that moment because I felt lost too, but not desolate. We had our moment, like we did with Lisa, that only parents who are faced with the death of a child can understand. We each knew exactly what the other was feeling.

I hurried and got ready and went down stairs with him. We found Lisa in the waiting room and she was an absolute wreck. I pushed the big square automatic button and went in, not asking if I could even see her. I forgot to ... the secretary was coming after me telling me to sign in when I seen her doctor (the loud guy) in the hallway. He told the secretary it was ok and put his arm around me and spoke beautiful words to the three of us. He told us,"Hannah did fine. The tube went down with no problems". I looked at him like he was nuts, not understanding how that could be after what he had told us earlier! He told us her vitals were almost stable and they were busy getting lines from her feet and legs and possibly her head. I told Terry I didn't want them to touch her beautiful little head and right then the nurse told me he got a beautiful vein in her foot. When we entered her room I was standing at the foot of her bed and when I looked at her naked little body hooked up to the breathing machine and all the tubes everywhere, I took it hard. My knees buckled and I turned away from the doctor, he noticed and touched my arm and I moved away from him. Hannah's attending Oncologist was there and she came over to help me and I wouldn't let her touch me either. I stood over away from all of it with my face in my hands and got myself together. Lisa was sobbing so hard, I was really worried about her. Terry was trying to be so strong and the 3 of us held each other for a little while. There were 3 nurses working on her and they were very busy. I felt like we might be in their way so we didn't approach Hannah. We all looked at her and how sick she was. When she closes her eyes the lids don't close all the way, and you can see the white of her eyes. Hers were red where the white should have been and there were tears rolling down her face. I looked at the screens and all her vitals looked good, real good.

Lisa told us she seen Hannah's head move. I told her that couldn't be because they had given her a drug to paralyze her body (for the breathing tube insertion). Then she rolled it again. The nurse said she was waking up. I ran over to her and put my hand on her head and said hello and she squeezed my hand! I told her I loved her and she mouthed the words she loved me too! I couldn't believe it was true. I said, "Hannah, do you know it's mommy? Do you know Daddy and Sissy are here too? Do you know how much we all love you? Do you know how sorry we are that you got so sick and had to come down here? Do you understand that the breathing tube is only down your throat temporarily"? Each one of these she nodded Yes to. Terry and Lisa couldn't believe it. It was very emotional for them. Lisa went over to her other side and began kissing her on the forehead and Hannah tried to smile. I wanted to ask her a question that she would shake her head No to ... I said, "Hannah, are you ok? but she said yes to that. So I asked her, "Hannah are you in pain? and she shook her head no. She was hearing us loud and clear and understanding everything we said.

It was great a few minutes later when she tried to bark orders at the nurses! She started shaking her head back and forth like she was upset about something ... I asked her if there was something wrong and she shook her head yes. I asked her if it was something I could do and she shook her head no. I asked her if it was something the nurse could do and she shook her head yes. So the nurse started helping me out. She was asking lot's of question and Hannah kept shaking her head no. Finally, Hannah pointed her finger at a male nurse who was having fun with her the whole time ... laughing and joking. He took off his over-shirt to show her his undershirt which had a silly Sponge Bob picture on it. He knew Hannah wanted something from him and when the nurse started to poke her finger to get some blood Hannah shook her head no and pointed to the silly nurse! I asked her if she wanted him to do the stick and she nodded her head yes! Still the boss and still in charge of her own little body!! Amen!! I loved it! I love the spirit of this little angel. She's so Amazing. I went on to ask other questions and found out she was cold and wanted covered up, that she wanted the board under her back removed and wanted her bottom changed!

I noticed Terry was holding back from her and I assumed it was either too hard or too scary for him. I went over to him and grabbed his hand and told him I wouldn't have missed this for the world! Lisa came over and they both started crying saying they didn't think she was ever going to wake up again. They thought she would die without ever regaining consciousness. What a beautiful experience for us, I thank God for allowing us to witness that.

A few minutes later the Cardiac fellow came down and said since Hannah was now intubated that he could safely go down her throat with a probe and get a better look at her heart from behind. I was confused ... they had just told us the night before that her heart condition was fatal and there was nothing that could be done. Something inside me began to stir. I agreed to the test and they sedated her. A few minutes later the Cardiac Surgeon came in and preformed the ultrasound test himself and allowed my dad and I to stay in the room while it was being done. These doctors are really good about that here and I appreciate it so much. While the test is being done you can see her heart on the screen and it was beating strong from what I could tell. He turned something on so you could hear it beat and it was very loud. All the doctors in the room were discussing it and within a few minutes it was over. Are you ready for this?? Her heart is FINE! Her heart if FINE!! It's strong and beating with NO problems!! Yes, she does have fluid around her heart but it's very little. It's so minor that they could go in and drain it but it wasn't necessary. Unbelievable. The Surgeon had already left when I thought to ask the Cardiac Fellow about her right chamber. She told me that was alright at this time, because she is intubated. The pressure is off. She advised me that it would still be a problem when Hannah was extubated. I wanted to tell her Bologna but I didn't! She also told me that with all of Hannah's other problems she was still very, very ill and would not make it. It was on the tip of my tongue to ask her if she wanted to make a bet! I was too excited to tell Terry the test results though so I left the room!

Her PICU doctor made my heart sing ... he pops in and out of every room and checks on the progress of what's happening with the patient. He tells them what to add or stop or whatever ... one thing I heard him tell the nurse was, "Order her a Roho bed, she's going to be here awhile"!!

They sedated her for the heart test and she was sound asleep and not responding so after visiting with family I came upstairs in Hannah's room to take a nap. After 4 nights of no sleep I thought I would sleep good ... wrong ... I might have slept off and on an hour.

I thought I would take the time to update you all now. Who knows when I will get another chance to. My cell phone has lots of messages and there are many emails but there's no way I can read them. If I get a chance while she's resting I will, if not, and you really need me keep trying our cell phone. 618-972-6901.

Please continue your prayers for this amazing little gift of life. I know Jesus is working and she will be healed. I put all my faith and hope in him.

Love, Cindi

07/17/2004 - Pray for Pee!
 We need to pray for Hannah to Pee! Her urine output today is dangerously low. The doctors are thinking kidney obstruction ... another serious problem.

Hannah received blood today and hopefully by tonight platelets. The rest of her counts are all good. Her sodium has been perfect for the past two nights. Hannah is swollen more in her lower half today ... she needs a huge relief in this area!

They are still sucking out tons of drainage from her breathing tube ... they won't tell me if this is good or not. The color is supposed to be clear but Hannah's is a white/yellowish.

She's so cute ... she wakes up every now and then and oh how her mind is so sharp. She takes only a second to think things through then makes her answer quite clear through a nod or shake.

I thought I was going to faint when we rolled her over tonight and I seen three awful black bedsores. They are mean and ugly looking and I'm very upset. Her whole back and bottom are red, purple and blue. Her nurse took out her old bed and put Hannah in a PICU bed with a Roho mattress tonight. I'm really hoping this helps!

She knows we're there and she knows we love her. I tell her all the time who has called, emailed or sent cards and presents. I always ask her to squeeze my hand so I know she's heard me. She knows you are all sending your love and support for her.

Tonight she told me she was comfortable, was in no pain, that she knew she was in the hospital, understood what people were saying to her, and finally, that she wanted to come home. Soon my precious.

I'm tired but hanging in there. Children's has been kind enough to let me stay in Hannah's room while she's in PICU. I try and rest at night and sometimes I do sleep a few hours. I know she's in good hands where she is ... I just miss her not being in the same room as me.

I'll keep you posted. Please pray for Hannah to pee, pee, pee, and pee some more.

Love, Cindi

07/18/2004
 Thank you for praying for "pee" today. She has pee'd a little bit more today than yesterday. She still needs to pee ALOT more.

All Hannah's vitals, counts and blood tests are good. I asked once more and finally Dr. Jones let her have platelets this morning. Her color really perked up ... she's all rosy now.

This morning her nurse told me they turned her down one notch from the ventilator ... great news! Later in the afternoon they were able to turn her down another notch! They are weaning her off the ventilator and hopefully within two days the breathing tube will come out!

She had her eyes open so much more today. She's much stronger today too. She was lifting her head off the pillow and raising her neck up like she wanted to sit up. Off and on she would raise her bottom and knees like she wanted to get up.

Every time we would let her hands out of the restraints she would take it right to the tubes in her mouth. She hates the tape above her lip and would love nothing more than to pull out that tube and get that tape off. I would warn her to keep her fingers off the tape and tube or we would have to restrain her again ... she'd be good for a bit then slowly but surely she'd sneak those fingers right back over to the tape! One time she even pinky sweared with me that she would be good ... and she was for a little bit. When we would have to put her back in the restraints she would put up such a struggle! She would smack my hands and jerk her arm away from me. She is so strong and getting stronger everyday. This time reminds me so much of when Lisa was in ICU ... she fought like a tiger too.

Hannah continued to recognize everything that was being said to her and would communicate back with a nod or a shake. She's getting better and stronger everyday.

Her urine output is very poor. Terry talked with Dr. Goldsmith today and he said he spoke with the Renal doctors and they don't intend to do anything at this time. He said as Hannah improves they will reconsider their decision. Terry asked him what we were supposed to do ... nothing, which would mean she would die from kidney failure. Dr. Goldsmith responded that it's not critical right now, it's headed that way, but there was still time to go with little or no output before she was in failure. They have no idea what has happened and no intention of finding out why right now. I totally disagree! I have mentioned the kidney stone a million times and every doctor tells me they keep forgetting to mention it! If the kidney stone (which showed on the CT Scan to be in the left kidney ... which is also the one not draining, has become lodged in her kidney tube then this could certainly be the problem. No one wants to entertain the idea. Dr. Goldsmith did tell Terry that if we wanted to speak with the Renal doctor he would arrange it ... I said absolutely. Dr. Goldsmith also told Terry that just because they wouldn't address the idea of dialysis wouldn't mean that another place wouldn't. I wasn't there when they had this conversation so I asked Terry what he meant by that. Terry assumed he meant that possibly another hospital would! We plan to ask for a consultation in the morning to clarify a few things.

Hannah's really hanging in there. I'm so proud of this child's will to live ... what a fighter she is.

Please pray once again for Hannah to start peeing ... this time maybe we should be more specific and pray for her to pee at least one cup every hour.

Thank you all for everything and for all the new people emailing me telling me they are reading Hannah's updates and have placed her on more prayer chains. Thank you also for all the encouraging words of love and support.

Cindi and Hannah
07/19/2004
 I spoke with Denny today about the benefit and she told me that Channel 5 would like as many Hannah supporters as possible to be at 1010 Market St. tomorrow morning at 5:50AM ... yikes! They would like for you to remaint here until 7:10 am.

They want to do a story on Hannah about the benefit but also about Hannah. I doubt I will be there ... maybe Terry or Lisa ... or if she's ok maybe I will ... who knows. But I do know if we aren't there that many of you could tell the reporter just how special she is.

The person that is supposed to be there is Jason.

Please come out and support her if you can. I think they would like for you to bring a sign too if possible.

Love, Cindi
07/19/2004
 When I went down to see Hannah this morning she was more awake than she has been in a while. The nurses told me they had her communicating with them for sometime. It wasn't long before Hannah was back to sleep where she stayed for most of the entire day. Her heart rate dropped for the first time in a long time into the 120's. She was doing a little breathing on her own with the help of the vent. It was just off and on, but still it showed she is exercising those lungs every now and then.

Hannah pee'd even less today than yesterday. I'm so worried. She has GOT to start peeing! We had a meeting this morning with her Renal doctor and she told us Hannah wasn't critical yet and that we should take each morning with a reassessment to decide where to go. She said Hannah is in Renal Failure. However, it could be that the kidney's will start working on their own again ... maybe. There are no guarantees. Her fluids have been restricted even more today. Hannah was given an ultrasound test of the kidneys today but we haven't gotten the results yet. The doctor said any number of things could have caused this problem ... the chemotherapy, radiation, contrast for the CT Scans and tests, obstructions, you name it. But because we don't know what's causing it we can't determine if it's irreversible either. It's a day by day watch and see for now.

It was early evening when her PICU doctor came in to talk with me. He told me he thought Hannah's tumors were progressing. I asked him why and he said because he believes she has a partial blockage in the lower bowel caused from the growth of the tumor. Again I asked him why and he told me because this is what tumors do, they progress. I told him according to the recent CT Scan that was not the case. I asked him if there was another reason he was thinking this and he said yes because when we gave Hannah her nutrition yesterday down her NG tube that after 30 minutes when she was suctioned it came back out. I told him since Hannah was born she has been very slow to digest what's in her tummy. We asked him to wait an hour this time and he agreed ... the nurse didn't measure what was suctioned the second time but thought it was much less than what was put in. Later this evening after I fed her we waited 90 minutes before suctioning and there was alot that came back but we didn't measure it so I'm not sure how much. We are going to make an effort to measure for sure tomorrow.

Dr. Jones told me the Cox II inhibitors that were available for Hannah could only be taken by mouth and since they feel there's a partial or complete blockage that Hannah wouldn't be a candidate to try these drugs. It's a form of a Chemo drug which works more on shrinking the tumor.

I spoke with someone today at Manna Relief about the problem of Hannah digesting her natural nutritional supplements. We all know that if Hannah doesn't get some nutrition in her very soon her body will fail and shut down. We don't have time to wait around. The doctor there advised that we try the nutrition via a Enema. He said this could actually work better than through the NG tube. I spoke with her nurses about it and they thought there would be no way the doctors would agree! I never got the opportunity to ask, there was an emergency this evening. My guess is they probably won't and it'll be another battle.

Hannah's blood counts are stable, her vitals are good and she's breathing so much better now. We continue to make progress in these areas. Dr. Jones told us this morning that this is out of the ordinary of what they would expect from Hannah right now. I explained to her that Hannah was always "out of the ordinary".

So it's a day by day, hour by hour treatment plan I guess.

Please continue praying for Hannah to pee. Her lower body is swelling but it's not critical yet ... she has got to start peeing! Asking God to perform the miracle that we know is coming for Hannah would be wonderful too.

Sorry that my earlier email only gave you a short notice about showing up to support Hannah in the morning ... but Denny was given the information late as well. Hope to see you there if you can make it!!

Love, Cindi and Hannah
07/20/2004 - God is so good!
 When I went down to see Hannah this morning she was still unresponsive. Two of our favorite people from Glennon came to see Hannah this morning and even they couldn't rouse her. Hannah absolutely loves Peggy and if Peggy couldn't wake her then nobody could. I was very concerned and spoke with her nurse about it.

Later in the early afternoon when we spoke with Dr. Goldsmith I mentioned it to him and he thought it could be because the kidneys weren't working they weren't flushing out the constant drip of sedation and pain medication. Later in the day he turned them off!! Wow! I was very surprised. I was upstairs doing some work when Terry came up and told me. He said both my sisters and our good friend Karen was with Hannah and they were trying to get her to respond. When she finally responded it was only a little, but it was a beginning. Hannah would shake her head "No" and squeeze your finger but wouldn't nod her head "yes". At one point Hannah could hear my sister talking and she knew her back was to the voice ... and she moved her head so she could see over her shoulder!

When I came back down in the early evening and seen those beautiful baby blue eyes I just melted. She was still very sedated and in and out of it mostly. If I would keep talking to her over and over she would take her time answering me but eventually she would. I must of asked her a hundred questions. I started asking intentional questions so she would have to answer with a "yes" and nod her head. Then she just wouldn't answer me at all.

Her vitals were all good today and on the breathing machine she was breathing 12 breaths above the machine on her own! Good news! Today her blood pressure went up and we think it was because with no sedation she was aggravated. Both her arms are in restraints and she just hates it.

As the evening wore on and it became late you won't believe what happened!! As I was checking her bottom before we turned her I saw Hannah pee! I saw it coming out and told the nurse to look because she was doing it on her own! But it gets better, not only did she pee but she went big potty too! It was only a little bit but that was just wonderful. She repeated this one more time 2 hours later. I was beside myself with happiness. I was so excited I would tell anyone who walked by us that Hannah had pee'd and pooped!!!

I kept trying to arouse her and "make" her communicate with me. Sometimes she would and sometimes there was no way. She did tell me that she didn't want me to leave her tonight, she did not want her music played yet, she did not want to be moved every two hours, and that she was uncomfortable. I asked her over and over about pain and she told me she didn't have any and when I asked if she would let us give her a pill to make sure she didn't have any she said No. Always has to be the boss.

After turning her again and oiling her little body down with Olive Oil it was time for Mommy to come upstairs and try to get some sleep. I hated it when she wouldn't tell me it was ok to leave her ... I just couldn't do it. Eventually she did fall into a deep sleep and I turned her music on anyway and left with strict instructions to call me if Hannah woke and needed something or if there was some concern about anything.

All the glory goes to God ... and Jesus ... thank you Lord! Hannah went pee on two different occasions for sure!! She also went big potty ... thank you once more Lord! My faith is never unending for Hannah. My dad's pastor and our new dear friend (whom we consider a Prophet) have both been quoting me scriptures that is a confirmation from God that Hannah was going to be alright. Rocky suggested I read them over Hannah tonight and I did ... and I will for the rest of her life. I'll get the scriptures for you tomorrow night.

Terry is really having a hard time right now ... he's praying and has tremendous faith but the wear and tear on his heart by watching Hannah get worse has taken it's toll on him. He sees her lying there and knows there's nothing he can do to help her. Only God can save Hannah.

We were so grateful and thankful when she started waking up more today.

I have a smile in my heart that hasn't left me the entire day. I know Jesus hears out prayers and that he is working his miracle on her as we speak.

There are big things for little Miss Hannah out there. God has placed a great calling on this little angel's life. She has this huge world to fill her spirit with and more importantly, spread her love and sunshine with. We are so lucky and so blessed.

I'll keep you posted.

Love, Cindi and Hannah
07/21/2004
 When I left Hannah last night (early this morning) she was so restless. When I came back down here around 9:30 a.m. she had been put back on Fentanol (her pain drip). She isn't nearly as restless nor is she nearly as awake. At least she's responsive! Sometimes she's even down right feisty. She wants her hands removed from the restraints! The first thing she does when she hears my voice is start moving them up and down. If I don't release her she gets upset and starts pulling on them hard. I always give in and let her have her "freedom". I warn her if she touches her breathing tube that I have to re restrain her and that's all it takes! She's such a good girl. I do have to remind her sometimes ... and I would never walk off and trust her!

I was very disappointed to see her "numbers" this morning. One way they use to know how her kidney function is through blood work and checking her Creatin level. The past two months Hannah's has been 0.4 - 0.5 (which is normal). Everyday this level has increased. Yesterday she was 2.0 and today she was 2.5. I spoke with the doctor today and he said the real concern is what the Urick Acid level is. I don't know what this is yet. He assured me that she's not in any crisis. We do have time, through controlling her fluid intake, to hope and pray her kidneys start working again on their own. Her urine intake was a tiny bit better than yesterday's but not nearly enough to keep her out of trouble.

She continued to have stools throughout today as well. The doctor said to test and make sure the CDIF is gone they have to send 3 samples to the lab. One was sent last night and it was NEGATIVE! Another was sent this afternoon and again tonight but we don't have those results yet.

We are still feeding her through her NG tube. We're giving her fresh vegetable juice and her tea, aloe, magma, and flora drink. She can only handle 3 oz. at a time. We leave it in her without suction for 2 hours. It's impossible to tell when we turn the suction back on what is the nutrition and what is the secretions. I'm hoping even a little bit will be absorbed into her body.

Last night I got really upset about the bed issue. When Hannah came down her last Friday morning I heard the doctor order her a special kind of bed and a Roho to use until the special one got here. Since Friday I have asked several times a day. No one ever seemed to know what was going on. First, they had to have an order, then only a nurse practitioner could order it and she was on vacation, then there were other excuses. When we were turning Hannah last night and she cried and cried from the pain of being moved that was it! I told her nurse that I had had enough and was very upset. Her nurse went right to the secretary and sat down with her and watched her order the bed. It took all of 5 minutes to do. When I got down here this morning Hannah had already been put in her bed and boy is it nice! Oh my gosh! This bed turns Hannah by itself, with a push of a button. It does a much better job than we could! Hannah loves it! Terry asked her if she wanted one of these at home in her new Princess Bedroom and she nodded her head yes!

Then I went onto the next "problem". I've been asking since Sunday for skin care to come and look at her. Same problem, so while I was "asking" for the bed I "asked" for them to look at Hannah asap. They hadn't arrived by 1:00 p.m. so I told her new day nurse how upset I was about requesting them and waiting for them and she called and got someone immediately. The nurse ordered her a product called "pull through" and said it worked wonders. She told me it would take awhile because Pharmacy had to mix it by hand and I told her that was unacceptable. Her skin looks so horrific around the diaper area and there was no way it could not be causing her pain. It was brought up within 15 minutes. Then I told her nurse that we had been waiting for two days for Hannah to receive a Gel pillow for her head (it's breaking down real bad in the back). I was told physical therapy had to see her to order one and no one had requested them yet. Her day nurse, Marjie, is excellent and knew how upset I was and within 15 minutes Hannah had her little gel pillow. Physical Therapy never arrived though. It should never be so hard to get your child the type of crucial requirements necessary to keep her comfortable.

When Hannah was brought down to PICU there were 3 nurses working very hard on her and one big problem was trying to find veins to access her. It was really tough! Nurse Greg ... aka SpongeBob, was about to give up when he found one on her foot. It was rarely used and because of all the swelling in the lower part of her body the IV went bad and had to come out. What it did was leave this little tiny needle hole. It's the funniest thing ever ... Hannah has a little waterfall coming out of that hole! She has been draining fluids from there all day! She has saturated blankets, towels, sheets, and absorbing pads! It's unreal how much is coming out. When her doctor came in this evening I was telling him about it and he said it was fluid from her tissue and should stop draining anytime. I told him about the amount and asked him if we could "poke" little tiny holes in the rest of her body so she would work like a sprinkler. That's one way to get rid of all the fluid! He laughed and said he'd never seen a patient do this before and doubted that we should even consider poking her anywhere else, the risk of infection would be too great. It's honestly working though! Her nurses have laughed today, they've never seen anything like this either.

Hannah is still breathing above the vent, and all her gases and PH levels are so good that I asked her Doctor this evening if we could turn her down another notch and he said yes! She's getting close to not needing the breathing tube ...

Unfortunately, I had to give up Hannah's room on 9 West this morning. I knew it had to happen and I'm so lucky and so grateful that I got to keep it and use it for as long as I did. This means that we are now going to have to take shifts. I'm staying up with her all night tonight and will go home in the morning when Terry gets here. I will grab about 6 hours and head back up and together we will visit with Hannah for a couple of hours. I hate leaving during the day because that is when all the tests are done and all the doctors come by, but I know I can't function without my cat naps and there's no where to get one of those now.

I was upstairs this evening when Hannah's renal doctor finally came by. She told Terry that she and the radiologist reviewed Hannah's recent ultrasound and CT SCan. She said there was no way they could tell what was going on with Hannah's kidneys by these tests. They really studied them and discussed what to do to find out how to see what's going on with the Neufrostomy tube but couldn't come up with anything ... which means they don't know what's going on, they don't have a way to find out what's going on and they don't have anything to offer Hannah if her kidneys don't start working on their own. She told Terry that Hannah would die of kidney failure if they don't start working soon. Good thing I wasn't there! I will not take no for an answer. If there isn't anyway that she can figure out what's going on with these kidneys then find someone who can for crying out loud! I refuse to accept that we will "let her die" because we "don't know what's going on". Terry forgot to ask her about the kidney stone, but was sure her reply would have been that she didn't know because she couldn't see through testing what was happening. She told Terry it's because of the tumor being so huge that it is blocking the view to the left kidney. Yet she will also tell you that there is no evidence that the tumor has grown. It's very frustrating. I want to ask her tomorrow about the possibility of placing a tube in the right kidney.

Hannah had alot of visitors today and each one of them said that Hannah looked so much better. I agree ... she's comfortable now having her new bed. I talked with her last night about getting well and being patient because this time it was going to take awhile. I kept hugging her and kissing her all over her face ... she'd push me away and shake her head No because she doesn't like anyone in her face. I started singing our song "Amazing Grace" to her and she would shake her head No. I was massaging her body and asked her if that felt good and she shook her had No. I asked her if I could play her music for her and I was shocked when she told me No again. I asked if I could turn her favorite cartoons on or her favorite show, Animal Planet, and again was told No. I asked her what it was that I could do for her ... of course she can't answer me, so I had to ask alot of questions to get my answer. She told me she didn't want me to leave her and that she wanted me to be quiet. She's still the boss.

I've got alot of emails to answer and my goal is to try tomorrow. Thank you for all your love, support and prayers. I know God's presence is right here in Hannah's room, you can feel it.

I'll keep you posted.

Love, Cindi and Princess

07/22/2004 - We need PEE!
 I was very concerned most of today because I couldn't get Hannah to "wake up". No matter how much I got in her face or shook her or talked to her she just couldn't wake up. Around 7:00 p.m. I told the nurse I was going to turn the Fentanol off and see if this helped. Around 10:30 p.m. she started to open her eyes some. I'm hoping I'll be able to arouse her more as the night goes on.

Since having the problems with the vent early this morning I've been watching every button like a hawk. To make a long story short, Hannah vomited this evening and it was quite a bit for her. I got her nurse and the decision was made to pull the tube out 1 cm. Her nurse had suspected all along this was the problem. We had to untape her all over again. Then we had problems flushing the NG tube so we replaced that too ... good thing because it had a hole in the bottom of it. After replacing all Hannah's tubes she sounded like a new child! What a difference it made in her chest sounds.

I asked the doctor today about weaning her once again off the vent. Her numbers have been so strong and she's done so well that he readily agreed. Since she's done so well today there's a good chance they will wean her down even more tomorrow. We've got to pray for excellent blood gas results though.

Today her nurse and I were changing Hannah's bottom and once again she decided to "show" us that she can still pee ... from the bladder. It's so funny, it's like she's proving a point or something. Her urine output from her left kidney is so alarming. Her BUN is 47 and her creatin is 2.7. It's starting to become serious. Her kidney doctor never bothered to speak with us today, I've left a message that I would like to speak with her in the morning. The approach they have decided to take is not to do anything ... if her kidney's fail they will just fail and Hannah will die. I've decided that I am going to at least insist on a second opinion.

I never thought I would be so happy to know that Hannah passed gas. Oh my goodness, there was no mistaking the smell ... this is a great sign!

Her little foot is still spilling fluid everywhere. I'm seriously thinking about poking the other one so it drains too. How can there ever be any infection if it never stops draining!

Physical Therapy came in to see Hannah today. They exercised her as much as they could and plan to start seeing her everyday now. I'm so glad! Her legs automatically fall into a "frog" position. They showed me which exercises to do to help her the most.

While the nurse was suctioning Hannah this evening I asked her if they ever got the test results back from testing the fluid that was coming out of her lungs. She told me yes and that Hannah tested positive for a Bacteria infection. She forgot the name of the bacteria but knew it was not one of the normal standard ones that children usually get. That's my Hannah! The nurse told me the doctor wasn't going to do anything about it right now because she is doing so well on her own with her counts. She's not running any fevers so they are hoping her body will fight it on it's own. I'm a little upset that they never bothered to discuss any of this with me. Since I'm just finding out I will have to ask more questions tomorrow.

All in all our little angel appears to be doing well. If she don't start peeing though we are going to be in big trouble very soon!! Please help me pray for pee!

Love to all,

Cindi and Hannah

07/24/2004 - Needed Prayers
 Yesterday Hannah had alot of pee than she has in a long time. Today that is not the case, she's barely had any. We've also encountered yet another NG Tube problem. The suction will not bring anything out of her tummy. We know it's in there and we know if we change the tube again we'll be able to get it ... but that's not the answer. The answer is in finding what is causing the problem. This afternoon they got tired of hearing me nag and finally ordered an Abdominal X-ray. The x-ray showed nothing. All you can see is a little bit of her lungs and the rest is white .... which means that the rest is tumor and fluid. We could follow the NG tube into her abdomen but there's way to know if it's in the right location or not.

We can not keep changing the NG tube. For one thing Hannah hates it! For another it's a risk of infection and a risk of tearing every time we do it. The doctors have no explanation why this is happening. As they say, Hannah is their mystery child.

They did say there is a possibility the tumors have started growing in the abdomen causing a blockage and/or more pressure on everything that's located in her abdomen.

Hannah decided to throw everyone yet another ringer ... she spiked a fever! She went up to 102. and they wanted to give her another antibiotic and I said No. She's gotten three today ... that's enough! Her poor kidney status makes it impossible to know what she's using and what she's getting rid of.

They have also started having problems with suctioning from her breathing tube. They can barely get anything to come out ... and she's been having tons!

They dropped her Dopamine amount from 5 mg to 3 mg today. This is blood pressure medication. She done just fine with it until an hour or so ago. Her blood pressure kept falling just under where they want it to be. Unfortunately, they had to increase it back to where it was.

I am so tired I can hardly see straight. But tonight when her Oxygen rate started dropping into the 70's and 80's I woke right up. They had to break into her breathing line again (which is a risk of infection) and suction her direct. They were able to get quite a bit.

If we don't suction what's in her tummy she is going to vomit like she did yesterday. This is just as dangerous because she can aspirate into her lungs. There doesn't seem to be any good answers right now ... and Hannah could sure use some.

They turned her Fentanol constant drip back on her and all she has done this entire day is SLEEP! She hasn't even opened her eyes once. It makes me so angry! I talked with the doctor today and told them they had to cut it down more! He told me she was only on one "mike" as it was ... I explained that when she was more awake she could tell us if she needed suctioned, if she was having pain, and what she wanted! This way it's all a big guessing game. The fellow and resident said they'd talk to the attending in the morning.

I know you've all been praying so hard. I know your all waiting patiently with me for God to intervene and heal this child's body. The only thing we can continue to do at this point is pray some more.

Love, Cindi and Hannah
07/25/2004 - Not good news
 I left Hannah around 3:30 a.m. because she was having so many problems with the breathing machine and her blood pressure and heart rate. Everything seemed to go out of whack at one time.

It started with the non flushing from the NG Tube. Because of this her tummy is much more swollen. There's tons of stuff down there that they can't get out unless we change the NG Tube again. Dr. Lerner said this morning that perhaps she's draining downwards now and doesn't have as much as she used to ... I don't believe it though, just because of the history. The Dopamine has been readjusted to where it was in the beginning ... she wasn't able to maintain her blood pressure reduction.

Her breathing machine numbers had been turned down to 14 ... from 20. We were weaning her everyday. When I came down here this morning she was back at 20. I was so upset ... Dr. Lerner said because of the Urick acid level in her body she can become very sleepy ... plus the Fentanol really makes her sleepy ... and because of this she wasn't taking any breaths on her own ... she was letting the machine do it for her. If her kidneys would start working her BUN and Urick acid levels would go down and she would become more awake.

Her kidney levels continue to be awful. Her creatin level is now 3.5 and her BUN is 69. Her urine output is even less today. It's not good ... things are turning in a serious direction.

Because Hannah is so extremely fragile right now, even getting an IV in is a major problem. She has her port a cath, but today she needs blood so they need another source and the IV's she has in her are only good for about 3 days. Her nurse tried to get an IV 3 times today and couldn't. It was so awful! They called in the transport team (who are experts in getting an IV when no one else can). This certainly wasn't the case today though. The nurse tried poking her in her little head three times before I said enough then she went to her wrist and Hannah cried because it hurt her so bad! Oh, it was awful!! It's not fair for her to scream and cry and hurt so bad and not be able to be heard. I told them enough!! No more!!

They said Hannah should have a PIC line ... I don't think she's ever had one of those before. They said it's a surgical procedure and it's the weekend and they don't do these kinds of things on Sunday's. I find it amusing that they think children don't get sick and need surgery on the weekends! For crying out loud! Her little veins either roll or blow at this point and she needs help. As I was comforting Hannah her nurse tried one more location to start an IV ... her right swollen leg. It went in. Good thing she did it so fast or I wouldn't have let her. They tell me these IV's are only good for about 3 days.

To make matters worse, Hannah has another infection ... yeast. It's not the kind that we usually think of as adults. She has to have a strong antibiotic for this and it is going to be very hard on her kidneys.

Her doctor told me today that her visitors has to be restricted now ... only to parents and grandparents. If anyone thinks they may have been around someone who was sick or was not feeling well themselves then please don't come around Hannah.

I'll keep you updated but I wanted to let you know right away that Hannah's becoming more serious every hour.

Love,

Cindi and Hannah

07/26/2004
 After watching the nurses "torture" Hannah trying to get an IV line going yesterday, I decided I needed to come home. I still see Hannah "screaming" in pain when they were trying to get a line in her wrist and head. It was too much, I can't bear to see Hannah suffer. After a good cry, I find myself still unable to come to terms with it. As Hannah's mother I can take alot, because I know how much she wants me to fight for her life, but seeing her suffer is not something I can do.

I didn't go back to the hospital tonight. Terry is with her. I was told there was no change today from yesterday. She still isn't peeing, her vitals are all the same and her counts are good. Terry said the doctor told him today that she wasn't sure Hannah would over come the yeast infection she's battling because of the kidneys not working. Hannah's renal doctor's still aren't ready to do anything about the kidney's. I know what their doing ... their waiting for her to give up and die. Sure, they would love nothing more than for her to get better, but they've made up their minds and only see what they want to see. It seems like I'M the one who always comes up with the ideas and suggestions of different things to try ... and try as I might I'm not a doctor. I'm just a mom who wants her baby girl to live.

Yes, I'm having a hard time right now. I've had others share with me that God has assured them that Hannah is going to make it, but that she will be on her death bed before she gets better ... I have no reason to doubt them. I have every reason to believe them. But, that doesn't make it any easier to watch and wait and live my life at a hospital where everyone has given up hope.

I'm miserable at the hospital and I'm miserable at home. Everywhere I look there is Hannah all over our house. Every thought I think and every breath I take is for Hannah. I love her so much and wish she was here at home, surrounded by my love. It's time, she's been there long enough.

Terry has lost his "steam". I watch him sit in the chair with his head in his hand and know he's wondering the same thoughts I am right now. We find it impossible to bring comfort to others right now ... we can't find any comfort for ourselves. I do talk to Hannah and tell her it's going to be ok and that I'm proud of her for fighting so hard. I tell her to talk to Jesus and to pray. I know she hears me because she always squeezes my hand.

We need the tumors to shrink so her kidneys can start working again. We're asking for alot, I know. We're still asking for a miracle for little Hannah. Thank you for continuing to pray with me for Hannah to receive her miracle.

Love, Cindi
07/27/2004
 Hannah has remained the same ... no change for the worse or the better. After my doctor's appointment I was supposed to go home and rest ... but I needed to see my angel. About 3 days ago I started having alot of pain, redness and swelling at the top of my right leg. Each day the pain got a little worse and by this morning I could barely walk. My doctor told me it is either a infected spider bite or infected boil. He had to send it off before we would know for sure. He gave me the choice of using a scalpel to help it drain or to let him squeeze it. The pain was so bad ... I thought I was going to be sick, but I held out for the squeeze and not the scalpel!

When I got here I found Hannah to still be on the full dose of Fentanol. Her dosage had been reduced by half until they were trying to get an IV and hurt her so much. Then we increased it because we knew she had to hurt! It was supposed to be a temporary thing ... well, evidentally it wasn't and took some standing my ground but the dosage was decreased to half. I've been waiting for her to wake up a little, but after 3 hours she still hasn't. Because of her kidney failure medication doesn't move through her body like it would yours and mine.

I'm still having a difficult time right now. I've prayed and prayed about it ... but I haven't gotten any relief yet. I was thinking this morning how Hannah and I used to get our strength from one another. Well, she hasn't been able to do that since July 11th, when she came to PICU. I miss her so much. I want her to sit up and argue with the nurses and yell at me for not doing something the right way (her way). I miss her precious smile and if I could get a hug from her I think I would be ok for awhile.

I know, I know, I know, everything all in God's time ... but it sure is getting harder. Our faith hasn't wavered, but my heart sure is hurting for what little Hannah brought to it ... love, kindness, wisdom, and unselfishness. I need her little spirit in my life, to keep me balanced and grounded.

We continue to pray ... thanking God for everyday that Hannah remains here on this earth. We continue to ask for strength and peace and to accept his will.

I know you all join me in asking for the same for our family. Thank you for all your love and support.

Love, Cindi and Hannah
07/29/2004
 Once again the news about Hannah is bad ... very bad. When I got to the hospital today I found her breathing to be very labored. Every breath was an effort and her head was "bobbing". She was clearly is severe distress. Lisa was with her most of the day before I got here and was very upset and worried. Lisa said she had been trying to get a doctor to look at her for the past 4 hours and there was so many emergencies that no one could look at Hannah. I went to her nurse and expressed my feelings about no physician looking at Hannah and within 10 minutes one came in.

Paula, a nurse practitioner said this was very bad news and they were very, very concerned now. She said this is a sign of progression and things were taking yet another turn for the worse. I asked her to turn the Fentanol up or give her a bolus and that was done immediately. Hannah's breathing returned to normal within minutes. After an hour or so she began breathing labored again and I asked them to turn her constant drip up to one mike and they did. Again, she was fine for about an hour. When she became distressed again I asked them for a bolus and she has been fine since.

The attending came to see Hannah and told me what Paula had ... her lungs sounded perfectly clear, all her vitals were perfect and that she had no idea what had just happened or what had caused it. Her kidney level of BUN and Creatin are dangerously high. Because the toxins are so high Hannah has not been able to return to her conscience baseline. I'm sure she hears me, but she can't respond.

She's dying and there's nothing anyone can do. Only God can grant Hannah life. Tonight Terry and I both prayed over her for hours. Once again they are allowing me to crawl in bed with her for the night. I treasure doing this. The other night Hannah knew I was there. I laid my head on her arm and she laid her head on my head. She would squeeze my hand to respond, but she could no longer nod or shake her head.

Terry said last night that he knew something was going to happen in the next day or two. I knew today when I seen her that something was going to happen in the next day or two also. I know your thoughts are with us.

Love, Cindi and Hannah
07/30/2004
 I got to sleep with Hannah again last night. Not that I slept much ... but just being so close to her feels so good. Paula (Hannah's nurse practitioner) said the human touch sometimes can do more than medicine ever will and I understand completely. I think it does as much for mommy as it does for Hannah though.

When Hannah's nurse was suctioning Hannah this morning she wasn't getting anything out of her lungs. For Hannah that was very odd. When she turned her completely on her left side Hannah's alarms started going off everywhere ... including the vent. Her nurse would suction her over and over but again nothing would come out. She was very busy with another patient this morning and would have to run back and forth trying to silence alarms and figure out what was wrong. After this pattern Hannah decided to let all of us know what was wrong! Her heart rate dropped into the 80's then 70's and I called for her nurse!! Her blood pressure was dropping and her oxygen was very low!! Her nurse didn't have time to "gown up" and had to start bagging Hannah immediately. Her nurse had pushed the alarm button for the doctors to come and just as Hannah was coming back they came in. They listened to her for a long time and when Respiratory finally came in and started suctioning her we found the problem. Hannah had TONS of gunk in her lungs! She was suctioned over and over and over again and globs of stuff came out of her! No wonder!

After putting Hannah back on her back the NG tube finally started suctioning lots of stuff out and she settled down. The ventilator alarms were off and she was out of danger again. We've found everything is so "positional" with Hannah. Later, the doctor told us that she was sure that what happened with Hannah today was isolated and not something that we should look at as a step in a bad direction.

Unfortunately Hannah has become unresponsive now. It breaks my heart. I know she can hear me though. Sometimes I think she's using her eyelids to communicate. This evening after a visit with Dr. G. she started to come around a little bit. She moved her hear and squeezed our hands ... not on command, but I'll take it.

The surgeon we had a consult with two days ago came to see us today ... he stands firm in his decision that operating on Hannah would mean certain death for her. That she would bleed to death because this tumor is so vascular. We discussed it for a long time ... he doesn't have Hannah's history. He told me he would love to operate on Hannah and that Children's surgery team were very aggressive. He told me he spoke with his two colleagues here at Children's and they both said the samething. He offered to contact Sloan Kettering in New York and get another opinion from their top surgeons. I thanked him for any help he could give us.

We got the results of the kidney ultrasound today ... it was good news. Both kidneys are clear of fluid and the cortex around the kidneys is now visible. The bad news was the blood flow that is needed to get to the kidneys to make them work is still not happening. We need to do the pee dance!

We went down to see Vic, Trish and Tim from 101.1 The River this afternoon. They were wrapping up this years fund raiser for Children's Miracle Network. All week they were playing excerpts from our interview last year. So many people here at Children's knew that is was my Hannah and told me they felt like they got to know the healthy Hannah. They also wanted to know what Pooze and Hannah's Hunk of Wind was! I told them that was a Cardinal Glennon secret! I brought the CD out and played the interview from last year in Hannah's room ... what a wonderful memory. Hannah is laughing so hard and having such a good time. She's doing what she does the best ... loving, laughing and having a good time ... all for a good cause.

Tonight we were giving her a bath and just AFTER we finished all the work of washing, rinsing, drying and lotioning her down .... she fills her diaper to the MAX! Of course she waits until we're completely done to do this though. I started to panic when I seen that it was completely runny and dark green/black. The nurse checked it for blood and it tested positive. I thought Terry was going to have a heart attack and asked the nurse to show it to the doctor ... the good news is when you have CDIF that having blood in your stool is quite common. I should also tell you this was her 3rd bowel movement of the day!!

After her second bath I was getting everything back on her and her pillows adjusted under her legs when I noticed her the gauze on her back (that covers her Neufrostmy incisions) was off and hanging by a thread. This is supposed to always be covered with gauze and a tegaderm so it is completely covered from germs. How the nurse missed this I don't know. But I found it and asked her to have the doctor look at it because it appears that one of the stitches has come loose. I was furious when the doctor said to just cover it up and if it needed stitched they would do it in the morning! Brrrr!!! I asked the nurse to have the doctor come and look at it immediately and she said she would be happy to. Terry made me come to the computer room to send out this update instead of talking to the doctor. The last think Hannah needs is one more infection from something that can easily be prevented and I'm so tired of hearing that "everything can wait until morning".

I was thinking how nice it would be if I could find someone to stay with Hannah during the day or night for a few hours that knows Hannah as I do and would care for her as I would so that I could get a break. I'm surviving on very little and know that I need more rest but don't feel that I can leave Hannah without someone in her corner that's as big an advocate as I am. Of course Terry and Lisa are advocates but it's all Terry can do to keep his head out of his hands and sometimes I don't think they take Lisa serious. It's also very, very hard on Lisa. When I got back to the hospital (after going home because of the spider bite for a night) and found Hannah in terrible respitory distress, not only was I furious, but I felt awful for Lisa because she had told the nurse over and over to get the doctor to look at Hannah. They didn't for Lisa (because they were all tied up with emergencies) and it was only when I got there and got angry that a doctor looked at her. These are the kinds of things which make me feel like I can't leave her.

All Hannah's "numbers" and vitals (except kidney function) are wonderful. We have so much to be thankful and grateful for. God has brought us this far and I know he will see us through until she is healed.

Thank you for all your support and prayers.

Love, Cindi
07/31/2004
 Today my dad came up to visit with Hannah and I was telling him what the surgeon told me about operating on Hannah. He started telling me a story he had seen on television several years ago about a doctor that was called Dr. God. Dad seen this on one of those shows like 20/20 or 48 Hours. It was a documentary about this surgeon who operated when all cancer surgeons said NO. Like Hannah, these people would die without surgery and there were many he saved.

The title "Dr. God" is not one he gave himself ... he is a very humbling man who does not turn you away if you can't afford the surgery. Dad thought he was in New York at the time.

I was wondering if anyone remembered the show or had any information about this physician. I've tried searching on the Internet but it's massive and I'm so tired. If any of you find a few minutes and wouldn't mind I would really, really appreciate it!

Love, Cindi
07/31/2004
 Terry spent the night in Hannah's room and I went up to try and get some sleep around 3:00 a.m. or so. Hannah's heart rate, blood pressure and body temperature were still very low and I refused to leave her alone. Terry said he'd stay so I could get a few hours.

Hannah remained the same until this morning when around 7:00 a.m. they put her back on the blood pressure medication Dopamine. Her heart rate is back in the 120 - 130 range. Her top blood pressure number and the "means" are also good ... would like to see her lower number come up though. Her body temperature just hit the 98 range around 10:00 p.m. tonight. She's out of the woods, once again.

Hannah's attending physician came in this afternoon to speak with Terry and I about what had happened to Hannah through the night. By the time she was done I was so upset. She told us that this is the sickest Hannah's been and that she was very, very concerned now. I almost told her that this is what she said last time too when Hannah was breathing so bad and she thought it was something new (yet all she needed was her medication adjusted). This doctor is all about DEATH. When she comes to the door I want to slam it so she can't come in. I don't believe one word she says and it's wonderful when Hannah proves her wrong! This afternoon she went on to tell us that she is now very worried about Hannah's heart and this could be the reason for the drop in the heart rate, blood pressure and body temperature. She said she wanted to order a Echo Gram stat! She also said this is a message that her body was giving us and we needed to read it! Over and over again she repeated herself in telling us how this "new" occurrence worried her. I finally got so sick of hearing it I told her, "Look, we are not deaf nor are we stupid, you do NOT have to repeat yourself 15 times by telling us Hannah is dying! We heard you the first time and there is NO need for you to repeat yourself!" I also told her if she was trying to prove something to just come right out with it. Then I looked down at Hannah and I told her that she had better understand one thing and that was that we were NOT giving up on Hannah and that she had better not either! I told her that Hannah's last conversation with us was that she wanted to LIVE and if she didn't quit putting her head down and looking at the floor and talking to us as if Hannah was already dead that I would ask someone else to take care of her!! BBRRR!!! These doctors are NOT God, why do they think they can play in his league!!

I was completely and totally upset the rest of the day. I cried and cried and cried and told Hannah to prove her wrong. I asked God to restore my strength and to help me find a way to deal with these people who try and destroy my hope and faith. His message to me came through Hannah herself. Her heart rate is right back where it was, her blood pressure is perfect and her body temperature is 98.6. AND her echo heart test was perfect ... no fluid anywhere and beating strong. Thank you Lord.

Hannah's nurse had told me last night that she was sure what had happened was due to the diarrhea. Hannah is severely restricted to only a tiny amount of fluids, just barely enough to keep her body alive and when she had the diarrhea last night it was massive amounts and she had 4 bouts of it! Another source of comfort God brought me was when I asked another doctor tonight if they thought this could be what had happened to Hannah and she said absolutely. She also told me that Hannah didn't appear to be any different this evening than she has been.

I don't know, maybe this attending thinks she can "break" our spirit. Maybe she thinks we're in denial about Hannah's condition. I can assure you she couldn't be further from the truth. Just the opposite, we live, breathe and sleep Hannah's condition. We know that it's ONLY because of God's mercy that Hannah is even here.

I've recently been experiencing other people share their thoughts about accepting the fact that Hannah IS going to die and that we should start preparing to take that next step. Terry tells me he's been having the same experience too. I am thinking about putting up a big sign outside Hannah's door that says,

NON BELIEVERS ARE NOT WELCOME HERE!
Stand strong in our faith with us that Hannah
is going to be healed or don't come in this room!

There is such a difference in our hearts and spirit after we've visited with someone who embraces all Hannah has done and continues to do in this battle for her life. Our spirit feels much lighter and most things we've been worried about disappear. We all must stand with Hannah in her fight ... we owe her that. I refuse, absolutely refuse to ever give up on this child. When and if God is ready to take her home he will ... and there won't be anything anyone can do about it. Others sharing their thoughts and sympathy with us before this happens only burdens our hearts more.

Besides that, they are going to have egg all over their face when Hannah once again walks out of this hospital. We ask that you continue praying and supporting us as we do everything we can to help our daughter live.

Love, Cindi and Hannah