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January 2004
01/07/2004
 I know it's been awhile since I've updated you all ... I always know because your e-mails start pouring in telling me I need to! It's just trying to find the time... this chemo and radiation is a full time job! I spend at least 40 hours a week between Cardinal Glennon and SLU, and that doesn't cover the prescription lines or shopping for medical supplies and equipment.

Since before Christmas Hannah has been experiencing "night terrors" and believe it or not she has started to sleepwalk. She has no memory of coming down the stairs in the middle of the night and telling me to get upstairs because the house is on fire ... nor does she remember the times I slip upstairs to check on her and find her standing in the middle of her bedroom floor walking in circles.

On Christmas morning as she opened her gifts she would smile and say thank you and one time I think I heard her say "wow". She has no interest in doing her homework and refuses to do one of her favorite things in the world ... reading. Her appetite is poor but we've been blaming that on chemo and radiation. When I rub her back all I feel is bones and she's extremely picky when I can get her to eat. Her Papa has much better luck than I do and that's probably due to his willingness to cook her anything smorgasbord style. And his patience for her after he's slaved over the stove all day just to hear her say "sorry Papa but I just thought I wanted that"!

Because of the dosage amount of radiation she receives and because she is back on chemotherapy, her kidneys, bladder and ureters are all taking a hard hit. She barely controls her urination and she is taking 4 different drugs just to settle the bladder down and control all the frequent pain she has from the constant spasms. She gets SO upset when she has to urinate and can't make it to the toilet in time! She screams and cries and I don't think it's anything other than pure Anger! At night time it's so bad that we've had to get her a port-a-potty for her bedside. This helped so much ... but unfortunately it wasn't enough and we had to start her on Pull-Ups at night time. For those of you who know Hannah well, also know that this is like the end of the world for her! She hates it!

Dr. Kelly and I discussed in length the behavior changes in Hannah and he urged me to take her to a child psychologist. He told me that as brilliant as Hannah is she has figured out how very ill she really is ... despite everything we've tried to do. Dr. Kelly and I have always been honest with her and done so with a positive attitude and assurance that we'll see it through together ... but despite this, her positive attitude is fading. Dr. Kelly is very concerned about this and tells me it is vital to her recovery that she maintain that special smile and upbeat attitude. Last time we were in the hospital Dr. Kelly asked this doctor to come by and see Hannah but her patient load is so huge that she sent her social worker instead. Hannah did not seem to like her very much and it took some real work on this lady's part, but finally she got Hannah to open up a little bit. Hannah told her that she has nightmares that there is a fire and it starts downstairs and that we (her whole family except Papa) are all upstairs and can't get out of the house. Hannah started just sobbing and couldn't go on for a while. Finally with the doctors prodding she got her to continue and Hannah told her that we had to jump out the window and that we all died from the fall. The doctor figures that is why Hannah is sleepwalking and why she is having accidents at night. I disagree and think the accidents are bladder related only. Hannah also told mommy that she feels like the Pull Ups are a form of "not punishment" but "humiliation". I couldn't believe these were her words.

Hannah also misses her school so much and her teachers and friends and the "normalcy" of it all. She told the doctor that she doesn't feel like she will ever get to live the same life as she once did ... especially since her major surgeries. Last week Hannah asked Dr. Kelly when she could go back to school and he told her MAYBE the beginning of February. Hannah's response was, "well it may as well be never as to be another month". I offer to call her little friends and invite them over for the day but she doesn't want that either. The doctor asked her before she left, "just what exactly do YOU want Hannah?" She told her, "to be cancer free". I had to go find the bathroom again.

Hannah will gladly go spend time with other family members besides me but wants to be back home by evening time. We think it's because she doesn't want me to be out of her sight for too long. This child psychologist told me I was "babying her too much" and that I needed to let her grow away from me just a little bit. I didn't even bother to discuss it with her because I can assure you that is not going to happen!!

This past weekend I noticed Hannah's right leg beginning to get bigger than the left one again ... and it's quite noticeable too. Sunday evening she started to complain a little bit about her right jaw hurting too. I checked and could find nothing obvious ... but Monday morning I could. Her right jaw bone area was very swollen and was sensitive to the touch. Eventually she let me rub the bone and I felt a lump and assumed it to be a lymph node. As the morning wore on the lump became a hard bump and after radiation we went down to The Costas Center where Dr. O'Connor took a look at it. He agreed it wasn't her teeth and that it was in a lymph node but decided we would just watch it for now. Well she woke up this morning and it was just awful! Her whole face was swollen and the right side of her mouth looked like she had a golf ball inside it. There were two large hard bumps plus the lymph node now. She also told me it hurt to swallow. I wanted to skip radiation and go straight to see Dr. O'Connor again but radiation was having a fit so we went there first. Later when we got in to see Dr. O'Connor he said the lymph node was still there and had moved back and noticed the new lump and said the other one had gotten bigger. He was puzzled and said he had no idea what it could be ... but after it was Hannah so he wouldn't be surprised at anything. He was thinking about just watching it but I felt very uncomfortable doing that. One reason is because the cancer Hannah has is usually found in the head area and presents with a lump. The second reason is because Markie's throat closed so tightly that he couldn't breathe which caused him to code which caused him to have the tube down his throat and linger in PICU for 3 weeks. Ultimately Dr. O'Connor agreed to send Hannah down for a odd type of x-ray that is rarely down at Glennon. He had to call them to see how to write the script for it. Hannah just had to sit in a chair while this machine went around her head and back two different times. Dr. O'Connor came down while the x-rays were being taken (which scared me to death) to get the results. They had to wait to be read by the radiologist though. Eventually he told us the x-rays were fine and normal. That's the good news, the bad news was he still didn't have a clue what could be causing this. I thought to ask him about the ultrasound because that was how Hannah was finally diagnosed, but they don't use ultrasound on the head area. I don't know why I didn't think to ask him about a CT Scan or MRI. We left after he told us the only other thing they could do would be to biopsy it. A biopsy is a surgery and with the chemo and radiation there is concern about her counts ... however, over this past week Hannah has been having all these little brown spots popping up all over her and again the doctors don't know what this is either. Could be they are related and she needs treatment for something else now too.

Dr. Kelly will be seeing her in the morning for her check up and Dr. O'Connor was more than happy to let him be the one to make the decision of what to do. I can tell you I will be upstairs checking on her breathing the rest of the night though. My fear is with the Methadone she takes at bedtime that she won't be awake enough to calmly come and tell me that she's having problems.

Hannah and I are hanging in there and I'm trying to be as positive as I can be for her. I sure wish I could find something to raise her spirits though. I've been trying to get her interested in planning the inside of her new princess bedroom but she says we'll wait until after it's done being remodeled (who knows when that'll ever get done) then she'll pick some things out.

I'm thinking about telling her that what we're dealing with now isn't fun nor easy, but if she really thinks about it no battle is ever won without determination and the willingness to wake up every morning knowing that your one day closer to the end. We've been battling every day for almost 8 months now ... and believe it or not the end will be here within the next 6 months or sooner.

As always, I appreciate all of you thinking and praying for our little angel.

Love to you all ... Cindi and Hannah
01/08/2004
 Hannah woke up this morning and didn't have any swelling on the left jaw bone, however, the two lumps that were there are still there and seem to be harder. Dr. Kelly said he is positive that it's lymph nodes and at this time we have no idea why they are there because she hasn't had any upper respitory problems at all. He said they are permanent though and that he will watch them everyday for awhile. Yup, we just live at that Costas Center.

She's been so exhausted since Monday but today she was barely moving. I had to dress her and take her to the sink to help her brush her teeth. We were leaving this morning and I asked her if she wanted me to carry her out to the van. She chose to walk instead. She has been sleeping so much lately too. As soon as she gets buckled in she is fast asleep and sleeps all the way over to the hospital. I really, really didn't want her to go through radiation today, she was just too weak and she looks so pale and frail; but her radiation oncologist insisted, so we did.

Afterwords we went to the Costas Center and after her counts came back we found out why she looked and acted as bad as she did. Her white blood cell count was only 0.87! Yikes!! She needed a transfusion in the worst way. After having to wait the whole day for Dr. Kelly to tell us this he wanted to know if we wanted to have her transfused right then or in the morning. I asked what was best for Hannah and he said she would be fine to wait until the morning. She would only drink water if I pushed her and refused any food at all today. I told her that we would have to stay the night if she refused to eat, but if she would eat just a little we could go home and come back in the morning. She promised me she would eat and even decided she wanted chicken wings. She called her daddy from the car on the way home and asked him to cook her some and he went to all the trouble of going to the store and cooking them and making her favorite sauce (and was an hour late for work) and once she sat down to eat them she started crying and said she just couldn't because she was too sick to. I took her to the living room and told her to lay down for a little bit and I would make her some mashed potatoes and gravy. That took me all of 10 minutes and by then she was sound asleep.

Hannah was given the honor of having a wall on 4 North designated to portray her poster size picture of anything she wanted to draw. It will be professionally matted and framed and will even have an engraved name plate at the bottom. Peggy has been asking Hannah for this for months and months. Hannah has been thinking about it but just doesn't want to anymore. I asked Natasha, who is a art therapist (and comes to Cardinal Glennon 2 days a week) for her advice and help in getting something started. Another passion in Hannah's life is arts and crafts. These past months Hannah and Natasha have become such good friends. An organization named Friends of Kids with Cancer fund her position and I can't thank them enough for all the contributions they have made toward the children with cancer in the St. Louis area. There has many times that Hannah and Natasha have just sat quietly in the Costas Center playroom while Hannah put her thoughts and feelings on paper through a picture. Natasha has also seen the change in Hannah lately and jumped at the chance to help her put something on a poster. They worked on it today for the first time and Hannah finished it in 4 minutes ... no kidding. It was a large tree with green leaves and a large blue sky with a couple of flowers around it. When Hannah was finished working on it she told Natasha she was done and to put it up. Not at all the Hannah I know. She can't wait to show off her art work to mommy. When I looked at the poster I almost cried. There was no sun or stick pictures of animals or lot's and lot's of flowers. She wrote in letters that were small in comparison to the size of the poster, "Cardinal Glennon is the best". The writing didn't even look like Hannah's. It was so odd, I asked Natasha if she wrote it and she said no that Hannah did. It looked almost like a grown up had wrote it. After having to go to the bathroom to cry again I had a lengthy talk with Natasha and we decided this wasn't the right time for Hannah to work on this project. I know 4 North will be very disappointed but will also understand completely. Before Natasha left we were standing outside the playroom talking when we both noticed Hannah going down the hall to use the bathroom and when we saw her skipping down the hall we both started crying (again)! She may be depressed, but there is still spirit in her heart.

We will go to radiation in the morning at SLU then to The Costas Center for more counts and a 4 hour transfusion. She should feel much better after that ... but just in case Dr. Kelly told me to bring her suitcase.

I'll keep you all posted.

Love, Cindi and Hannah
01/09/2004
 This morning Hannah was very sick, she even asked me to carry her out to the van. I was so happy that on our way over there her Radiation Oncologist called me and said after reading her counts from yesterday there was no way they would treat her today, or Monday or even Tuesday! I'm really glad she got a break from radiation, she really, really needed it!

As soon as we got to the Costas Center she started feeling better, I'm thinking it was because Natasha was there and had saved Hannah's seat for her. The transfusion took four hours to complete and we were there for a total of six. She was in her favorite chair and accept for the time that her good friend Erin spent with her at lunch, she was in that chair the whole time.

After two hours into the transfusion, Erin, her mom Shelly, and I went up to get her some lunch. For Erin, Hannah decided to eat better than she has for me in a long time! Between getting red blood, visiting with Erin and eating a hot dog and mashed potatoes she was feeling so much better. After lunch she had to go potty and she was so cute when she took her pole and ran down the halls! That was all she needed. Thank you Erin and Shelly.

So we are here at home and she feels good and looks much better with a little bit of color in her now. Amazing what red blood, food and great friendship can do. Also, I happen to know that there were lot's of new prayers going up for her yesterday... so thank you too Lord.

Love Cindi and Hannah
01/12/2004
 Hannah felt so good Friday evening, all day Saturday and most of Sunday. She got to spend a large part of the day with both of her Aunt's on Saturday. She got to play and visit with her cousin and have pizza out too!

Today she got a phone call from one of her classmates named Adam. She laughed so hard when his mother called him her "little Adam nugget". Adam got on the phone and asked Hannah to please not tell the classmates because he said he would be embarrassed, but she really had a dilemma because she wanted to call her friend Sasha and tell her. She laughingly told her dad about her conversation with Adam and told him she really wanted to tell Sasha because Sasha had a "thing for Adam". Her dad made her understand that this wasn't how good friends behaved ... Hannah agreed and didn't make the call, she sure laughed for a while though. I was so happy when she told me she would really like to go to Adam's house for a visit too, just as soon as her counts were stable. She did me one better and told me she had been thinking about her invitation to play with Joshua (our neighbor) and had decided that she couldn't wait to spend an afternoon with him! Then I reminded her that she had received an invitation to play with Jacob (my cousin's grandson who is the same age) and why didn't we make plans to do that too ... she said, "sure mom let's do it"!

Earlier in the day she really lit up when her bus driver Linda and some of the bus riders made a surprise stop by the house and delivered even more gifts for Hannah! She loved the card that the kids on the bus sent her, it had little notes with their thoughts about Hannah, all wishing her well. Hannah told me how special it was that they pray for her on the bus every day. Then there was the most beautiful blanket made by Sandra Abert who drives Bus #4 (the bus just behind Hannah's) bus. She also got the cutest kitty cat that makes "real meow noises too". Hannah loves Linda and the kids on the bus. Her seat is right behind Linda, and Hannah and the kids closest to Linda like the music Linda listens to because it was 101 The River! I really didn't want to let her ride the bus home from school this year, but ultimately let her win the battle. Tonight I heard her tell Papa she loved having the independence from me, and next year she would ride the bus to school also. It's very obvious that she is her happiest when she's where she loves to be the most ... in school and around the people in school that she associates the most with. What an attribute to the Staunton School District and the people who make it what it is.

The whole weekend started out just perfect for her. She got to skip radiation on Friday and knew she would Monday too. She received several personal cards from her teachers and school nurse and every one of them had a long note to Hannah telling her how much she was missed, and added positive thoughts for Hannah's future. She really enjoys those cards. In one letter from Mrs. Brown, (her kindergarten teacher) she shared with us that just before Christmas her dad (Mr. Wray) had been diagnosed with cancer. After reading the letter Hannah turned to me and said (very matter of fact), "Mommy, shouldn't we get busy helping Mrs. Brown's family to be brave and strong the way everybody has helped us"? My heart just sang with those words! It meant so much that Hannah has comprehended what it means to give back to others. This is not something I have taught her...I don't think I could even if I wanted to. It has been each and every one of you that have taught her this valuable lesson by bestowing to her your love, and support.

In all she opened 4 cards, three packages from overnight mail and UPS and more importantly she was excited about opening each one of them! It was good to see her enjoying each and every word on the cards and become excited over opening her packages in the mail!

Sometimes she receives packages from people that are total strangers to her. For example, she received one today from DWMM67, Battle Creek, MI. This must be a person from her prayer and update list that I have not ever met myself. When she asked me who this person was I explained that I didn't know. I've never e-mailed her myself and she has never e-mailed me either. This person must know someone who is on her prayer and update list. Hannah said that she didn't understand how a stranger who didn't know us could go shopping and pick out really cool gifts and send them to her and not know whether Hannah would like them or not. She asked me what made people decide to be "supportive" when they didn't even know what she looked like. I didn't answer her, I told her to think about it and I'd talk to her about it later. While I was tucking her in tonight I asked her what her thoughts were and she told me she was, "thinking strangers did these things because they were kind of like Jesus, because he always thinks of others before himself". I never expected that response! It's amazing what this 6 year old child is learning about life.

What was extra special today was when Hannah picked up an envelope with hand made cards in it from Zion Lutheran 3rd and 4th graders here in Staunton. She received them in the mail Wednesday and I gave them to her to open on the way to the hospital Thursday morning in the car. She wasn't interested though and only did so because I asked her to. This has been her mindset for weeks. I was SO happy to see her pick the envelope back up today and reread the cards with much excitement. We both laughed at how cute some of the pictures were.

When I put her to bed tonight she hugged me really, really hard ... then asked me for another one. She started playing when she kissed me on the nose then the forehead then the cheeks and chin. She went to bed laughing and being her old happy self. I'm praying that this was just a bump in the road for her and that better times are here to stay.

Thank you all for all your prayers, support and love. They are altering her life, her spirit and the person she will grow to be one day. We're not sure how to thank you for something so extraordinary!

Love, Cindi and Hannah
01/13/2004
 Hannah was up last night until 4:00 am. Yes, we are really tired. It was the bladder spasams and burning again. I give her medication before going to bed but sometimes it takes alot longer than others to start working.

Believe it or not she has new problems. On her little bottom she has three really nasty sores caused from Radiation. I spoke with this doctor about it today and he said it looks bad but he would hate to stop treatment again to let them heal. He is going to let them get worse before he stops again!! She only has 8 radiation treatments left and her back is so burnt now that I can't imagion what more treatments will do to her.

She seen Tom the Tutor in the Costas Center today. This was the first time in months and she ran up to him with huge hugs! He picked her up and swung her around and was so excited to see her again too. They played games and while I was in with Dr. Kelly (and after he was done examing her) she snuck out of the room and went back to find Tom. When I came out of the room with Dr. Kelly they were sitting by themselves at a table and he was teaching her how to count money. He has this unique special way of making it fun, lot's of fun! So after 30 minutes she caught on and picked it right up. I think I am going to make special trips over to see him in his office. I love the light Tom brings out in her when teaching her. They are such good friends. I told Terry today that she needs her school and the environment in the worst way. I know this is a big part of what is wrong with her.

So we are hanging in there and catching sleep when I can.

Thank you once again for all the help and support you all continue to bring to our family. We need it and appreciate it in the worst way.

Love to you all ... Cindi and Hannah.
01/19/2004
 I've had a few of you e-mail me wondering why you haven't had a recent update ... you know how my life is these days though. Remember when you don't hear from me the old saying, "no news is good news".

We're off in the morning for more radiation then we'll walk down the tunnel to Cardinal Glennon for her first day of chemo this week. She will do the same thing on Wednesday and Thursday. Dr. Kelly is giving her a reduced dose of chemo due to the complications she's having from radiation. She will go in early to the Costas Center for her three days of chemo and we're supposed to go home by the end of the day. Sure would be nice if it worked out that way.

Overall Hannah is doing much better. On Sunday she got to go play with Jacob, my cousin's 6 year old grandson. She played all day and had so much fun. She didn't want to leave but it was getting close to bedtime. We are going to set up a play date this week with a neighbor's son whose name is Joshua. They've both been looking forward to that! She was supposed to play today with Adam, a friend from her class, but his brother became ill and we didn't want to subject Hannah to that so we will take a rain check.

Her back and bottom are blood red and is blistering despite all the medications and lotions we use on it. Her radiation oncologist says there's nothing we can do and that it will continue to get worse this week. She also continues to have bladder problems too. Her attitude has changed about wearing the pull ups and potty chair though ... thank goodness!

She still has a little way to go with her willingness to read, enjoy the gifts and cards in the mail and homework. I'm hoping that with the more she gets out the more she'll start feeling like her old self again.

GOOD NEWS is that Friday is supposed to be her last day of radiation!! When I told her that Friday was also the day that she got to change her earrings for the first time since they were pierced she was really excited and said we should have a party! The only problem with this is I'm much too tired to even consider it.

Thanks for all the uplifting cards, gifts, e-mails, etc. that your all sending to make Hannah feel better. More importantly, thanks for all the prayers. I will keep you all updated as things change and when I can find time to jump on the Internet!

Take Care ... Love, Cindi and Hannah

01/22/2004
 Hannah had a bad night last night, she was up going to the bathroom and having little accidents. She was sick at the stomach this morning and crying and pleading with me to let her miss this one day. She looked real pale and her eyes had huge circles under them .... but I held her for a little bit and got her dressed and we were on our way.

Her back side is really burnt. The manager of Radiation Oncology, Joe, came and got me and asked me if I was aware of how bad it was .... I just looked at him like "Duh"! He told me that they had gotten new medication in and they wanted to try it on Hannah. It's Natural Care Gel and is made specifically for radiation burns. The Biofine was too though. Just then Dr. Norton came in and Joe asked me if he was aware of how bad she was burnt too ... Duh! Dr. Norton had just seen her Monday but decided to see her again today. After looking at her again he was more concerned and gave her a RX for the blisters and said we had to come back on Friday to be rechecked.

She was down in the Costas Center for Chemo today and I told Hannah's nurse about the two new medications and she called Dr. Kelly and informed him. He comes down to see her (after just having seen her on Tuesday) and was concerned as well. He was going to check with the Skin Care department to see if there was anything else they could do for her.

The worst part is that she will continue to burn for two more weeks. I can't believe it is going to get worse. She walks bow logged because it hurts now. Dr. Norton told her to go home and lay on her tummy and to let mommy douse her in this new medication, and to get a fan to blow directly on the burn area and to do it with her buns and back exposed to the air. When we came home and got her comfortable and laid her on the couch she thought it was the dumbest thing in the world! We started laughing at what someone would think it they were to see her like that! We started giggling and couldn't quit.

She's more nauseous this time with this chemo drug. To get her to eat is so difficult! She associates food with pain and it's just not so. She may be nauseated but rarely does she actually upchuck.

She's hanging in there as she always does though. She tries to be her happy sweet self as much as she can. Even when we get bad news about another friend in the Costas Center. His name is Muhammad and he has been battling Leukemia for 4 years now. His family is from Bosnia and they speak little English. This little guy is 6 years old too and has these HUGE chip-much checks. His little brother, Becker, fights with Hannah over every game they play because Becker cheats and Hannah insists on playing by the rules! After all the fight Muhammad and his mother have bravely fought these past years they found out early this week that Muhammad is not going to make it. They've done all they can do and are only trying to make him comfortable at this time. This poor, poor mother ... her husband was flown in from Bosnia Monday to hear the tragic news then had to fly back. It's just the mother, Muhammad and Becker here by themselves. She is just beside herself. She cries all the time as does Muhammad. I try to comfort them and the mother does respond but Muhammad doesn't. I'm not sure what they say to each other because I don't understand their language. All Hannah and I can do for her is to try and keep Becker settled down (he's a wild 4 year old). Please keep this family in your prayers these next few weeks.

I'm going to try and attach a few pictures to this e-mail so you can see some of Hannah's other friends from the hospital.

Take care, love to you all.

Cindi and Hannah
01/22/2004
 This is a picture of Brianna, she has the denim hat on. She has a brain tumor and is having a difficult time with finding the right chemo drugs to shrink the tumor. She looks up to Hannah so much. Her mother tells me that everytime Brianna says, "I'm not pretty with all my hair gone" or "I can't stand the pain anymore" that she will say to Brianna, "well do you think Hannah's not pretty, she doesn't have any hair" or "Hannah wakes up every day and still fights a battle and has lot's of pain". Because Hannah is Brianna's "hero" it works everytime.

Brianna was born with a birth defect, legs are very short and she's been in a wheel chair her whole life. I just love this little angel.

The lady in this picture is Michelle. She is the mother of Rayni. Rayni also is very sick. She's been on the transplant list for years now. Hannah was asked if she would like to help play Santa Claus at the Costas Center with Rayni and other members of Rayni Day Mircales.
01/22/2004 - Hannah playing Santa
 This is a picture of Princess Santa helping Rayni Day Miracles pass out Christmas presents at the Costas Center. I'm not sure what this little girls name is or what type of cancer she has.
01/22/2004 - Hannah smiling
 This picture was taken after handing out the gifts at the Costas Center. She is smiling that beautiful smile of hers with eyes that tell the whole story.



This is one of those rare photo's when she really looks like my side of the family. I think she favors my brother and my dad in this picture.
01/25/2004
 What a weekend it's been for Hannah. Friday evening she was crying off and on that her back and backside were hurting. Since she's been on Methadone since the day she started radiation I hoped this would work and her pain would pass. I think I may have mentioned in Friday's update that Joe, the office manager, asked Dr. Norton, the Radiation Oncologist to see Hannah's back side again as it was even worse than it was Monday. Dr. Norton did and gave me a script of Silverdine (which is used on burn patients). I started Hannah on this medication Friday evening and used it the entire weekend.

Friday night she was up going to the poddy and crying that she was hurting until around 3:00 am. Saturday morning she woke and said she felt better ... but as evening approached her tummy and vaginal area was turning as red as her backside! She was starting to blister around the top of her legs too. I continued to use the cream and pain medication ... until 1:00 am Saturday night when she woke up screaming at the top of her lungs that she couldn't take the pain anymore! I ran upstairs and she was sitting on the toilet trying to go pee ... but even a tiny drop burned her until she was hysterical with pain. I tried everything I could think of, even called 4 North and talked to the nurses there and they said to bring her in or page Radiation Oncology and/or Dr. Kelly.

I hated to wake the doctor covering for Radiation Oncology up at 2:15 am but I didn't know what else to do. He knew nothing about Hannah's case, he had never seen her before, I couldn't hear a word he was saying on the phone he was talking into plus he spoke in a language I couldn't understand! All I got out of 3 telephone conversations and an hour later was there was nothing that could be done for her and to just keep her comfortable with medication. I was able to finally drag out of him that the reason she was screaming when she tried to urinate is because now Hannah was burning on the inside from the radiation treatment. I thought I was going to be sick. I washed her and reapplied the lotion then the gel and got her to finally lay on her tummy while I put the fan on her back. She dozed off around 4:30 am after she was due for another Methadone.

First thing this morning I paged Dr. Kelly and told him of my frustration with the Radiation Oncologist and that I was very concerned because I wasn't a burn nurse and had no idea of what I was doing to her skin. Because the weather was so awful he told me he would have a skin care nurse call me immediately and when I told him I was out of Methadone we were going to try and figure out what to do about that too. With Methadone you must have an original script in your hand with an original signature on it and the Pharmacist must be able to call the physician to verify that everything was as it seemed.

Thank Goodness for small towns! I called our local Pharmacy and due to the weather he was closing at 1:00 pm for the day. I explained who I was and he knew all about Hannah and said he would remain open and do whatever was necessary to get Hannah her medication. After the skin care nurse called me I felt alot better ... yes, I was doing alot of things wrong. However, it was exactly what the doctor had told me to do! The difference is SLU rarely treats children for radiation plus the area they treated was huge. The skin care nurse is from Cardinal Glennon and all she sees is children. After I changed what I was doing with bandages and covered the burns and wounds with gauze she seemed better. I beeped Dr. Kelly back and told him our pharmacist would remain open if he would call him right away and fax the script. Within 15 minutes Terry was in Staunton getting her prescription and we didn't have to fight with the roads today.

Dr. Kelly and the skin care team must see her tomorrow morning though, whether the roads are bad or not. The skin care nurse told me we would totally change everything I did today and she would train me tomorrow on more of what to do. What a relief!

Hannah went to bed tonight and has been up going to the bathroom twice and both times she was "sleep walking" and thankfully I was able to put her back in bed. She said it still hurt when she urinated but not nearly as much anymore. Must of been all those prayers I was sending up this weekend!

What worries me the most is I've been told that she will continue to "burn" for 2 to 4 more weeks. Sometimes I wonder how much she can take ... she's very amazing. I'll keep you all posted and up to date if anything changes tomorrow.

Love to you all,

Cindi and Hannah
01/26/2004
 Hannah had another bad night and by this morning I knew her counts were low. It took all she had to get out of bed and dressed. I had to brush her teeth for her. I did get her to drink two cups of water but she wouldn't touch any food. She slept all the way to the hospital and as soon as we got to the Costas Center her nurse took her straight to the Mickey Mouse bed. Dr. Kelly came right in and paged Skin Care. She has had blood in her urine and gums for the past two days so Dr. Kelly done a CBC and yes, her counts were very low.

Skin Care looked at her and told me what I already knew, she was very burnt and diagnosed as 2nd degree burns. She brought this product in that we all liked real well. It's this clear bandage of gel. It's considered to be a second layer of skin. You can pick it up and move it where ever you want it to go. It's supposed to last up to 3 days. It's thick and the gel stays right on the burns and seeps directly into her skin. I was quite happy with the product till I seen all the drainage that was coming from her back would seep under the gel bandage. I haven't figured out how to keep her clothes from being soaked yet. When we got home this evening I noticed that Hannah had moved these bandages and watched her the rest of the evening every time she went to the bathroom. She has diarrhea now too! Because she can't figure out how to manipulate her panties so she doesn't move the bandages around, I have to help her go to the bathroom every time. I'm going to try and figure something out with this too ... this is something we have to deal with for a while yet.

She slept all day in the Costas Center and was monitored closely all day. I have to take her back tomorrow for a red blood transfusion and because he wants to monitor her very closely. I'll have to take her back Wednesday for a follow up and Thursday for a platelet transfusion.

She's lost 2 more pounds and it just doesn't look like my Hannah. Her face was all white and her teeth were chattering and she was shivering. She gets cold all the time now (because of the burns) so we have to make sure the house is 95 degrees!

I stopped by to get her some mashed potatoes and gravy from Hardee's and she wouldn't touch it. Thankfully her Papa got her to eat an orange before going to bed. She was so proud of herself ... she called me in the living room just so I could see all the empty peels.

We live day to day, and hour to hour, so I will continue to keep you informed as I can. Take care ... Love, Cindi and Hannah
01/27/2004
 What we feared the most has happened. Hannah was admitted this morning with a temperature of 105 and her blood results are much worse than they were yesterday.

She never should have left the Costas Center yesterday. Her burns are much worse today and they are shaking their heads because they don't know what to do for her.

She was so sick this morning, even more so than yesterday morning. I couldn't even drop her off at the door and go park. I left the van in front of the hospital and carried her to the Costas Center and took her straight to her Mickey Mouse bed. Marsha was upset and got Dr. Kelly right away. He looked at her back and how worse she had gotten overnight and told me she would be staying for a while here.

Even with the red blood transfusion all she does is sleep, sleep, sleep. Her WBC and Hemoglobin counts were much worse than yesterday. She's told me three times today that she's having trouble breathing. She looks so bad, her face is snow white and around her eyes she's turning that purple color. She's freezing cold and it takes awhile to get her warm after she gets up to go to the bathroom.

The skin care nurse came in to see her again today ... what we were using yesterday only seemed to make it worse. She is at a total loss and doesn't know what else to try on her. I insisted that we find the right place for Hannah ... whether it's here or St. John's or wherever. She needs a pediatric burn center because this wonderful hospital just doesn't see this and they aren't familiar enough to know how to treat radiation burns as severe as hers. We do know St. Johns has a burn cancer center and her skin care nurse is going to try and get some advice from them in the morning. Where ever I need to take her I will .... whether it's local or another state even.

Because she's running a fever and has no white blood cells to fight off infection we are all very worried. She also needs white blood cells to heal the burns on her back. Honestly, if I had known what this would have done to this child's back I would have never allowed them to treat her as many times as they did. I can't begin to tell you how much pain she is in. As much as I hated to, we had to put her on a constant morphine drip.

She continues to be symptomatic with the chills, diarrhea and light headedness. This morning she actually threw up, something she rarely does. She screamed this morning before she threw up that her tummy hurt her "really, really" bad With all the Immodium D that I've been giving her I don't understand why she continues to have the diarrhea. Her nurse and I are wondering if it isn't something intestinal. They started her on IV antibiotics's today and through the blood test results we will find out what is causing the infection.

I was so scared and worried today that I called Terry and had him come up to be with her. She's been awake very little but when she does wake up she tells me he better be here. So I asked her since she wanted Daddy if it would be ok if I went home and he stayed with her ... she said, "No, I want you here too Mommy". She may be sick and out of it but she is still "the boss" ... and the absolute love of my life.

Please, please, please pray real hard for my Hannah. She's been in this situation before and she weathered those storms ... and I just know she will weather this one too.

Love Cindi and Hannah
01/28/2004
 I know prayers were answered during the night ... the pain is better today and I can tell it's not due to morphine and methadone either. She is tolerating the pain and not complaining. I know I tell you that people just shake their heads and comment that they "have never seen anything like this" and today was no exception. We were up going to the bathroom every two hours and it takes a long time to clean everything up and change her and reapply medication and replace the layers of protection to the burns, so after everything is finished she only gets to go back to bed for about 90 minutes before we start the process all over again. She never cried or complained though.

Today her skin care nurse got the necessary information she needed to try something new with Hannah. Yes, the inquiries were made to Children's and St. John's ... and no, neither one of those hospitals have ever heard of radiation burns to any degree that Hannah has. Most all the time the radiation burns will cause very little if any problems and what has happened to Hannah is just unbelievable ... over the top for me.

There were about 6 of us in Hannah's room today coming up with a plan that we could all live with and work with for the next several weeks. In order to do this we had to completely clean the skin and rid it of the tons of Silver-dine we doused her in yesterday. They gave her an extra boost of Morphine about 15 minutes before we started the delicate task of cleaning off every single bit of the salve that had seeped into her skin .... the nurses were all prepared for the worst. Hannah and I had a calmness between us and we both knew it would be ok ... how we knew exactly I don't know ... but we did. We laid her on her tummy and I held her hand and bent over so her face could touch mine and I whispered in her ear while they started wiping the raw blisters and bloody skin on her backside. She never moved or cried or complained one time. Both the skin care nurse and her regular nurse were sweating they were so worried. They were expecting the worst and got a huge surprise. Half way through they asked Hannah if she wanted to take a break and she looked at me at for a minute and I shook my head "no" and she told them "no" that they could finish. I knew God was right there holding her other hand and I wanted them to finish before he decided he needed to go help somebody else. Within 15 minutes they were done with all the cleaning, reapplying new ointment and a new type of gauze to hold the ointment on. When they finished she got up and went to the bathroom and was fine! The only thing that upset her was that they wouldn't let her put any panties or pull ups on ... she hates that.

Her temperature has continued to rocket up to 104 but quickly comes down to the 101 area with Tylenol. She has a little bit of color today but still looks pale. She is very weak and we have a hard time trying to keep her warm. I wish I could find some leg warmers for kids for her. She can't wear pajama bottoms, only a button up or pull over top. This leaves her legs and feet very cold ... because she has to sit on the potty chair for so long to empty her bladder then get the bandages redone. Terry came up with the excellent idea of taking a pair of her thermal pants and cutting them to look like she had on a pair of shorts. Then he took the soft elastic that's at the bottom around the ankles and put them on her backwards so the elastic holds the pants up and the bottoms look like bell bottoms. But she has so many accidents a day that we go through them quickly. I also need some of those footies that have the skid resistant bottoms to keep her feet warm. I've been using socks but I need something to help her not slip. Does anyone know where I could find either one of these? Wal-Mart maybe?

She's been awake a little more today than yesterday. That red blood transfusion works absolute wonders for her. They plan to give her platelets tomorrow. Last I heard Dr. Kelly was thinking she might have a bacteria infection in the abdominal area. We'll know alot more tomorrow.

I will keep you all updated as I can. Thank you for the prayers, Hannah and I both know first hand that they were answered.

Love, Cindi and Hannah

01/29/2004
 Hannah didn't have a good day today. She complains that she hurts all over. She's still going to the bathroom every 3+D1540 - 45 minutes, battling with diarrhea and bleeding from every port. Yesterday and today she has to sit on the potty for a long time because she says she has to pee but it won't come out. She's continuing to run fevers but I did get her to eat 5 bites of scrambled eggs this morning and an ice cream sandwich for lunch. They made the decision to put her on TPN last night so at least she's getting some calories now.

I took it upon myself today to ask the Radiation Oncologist that's covering for her regular Radiation Oncologist to see Hannah's burns. This doctor did and was very upset that no one was wearing gloves, masks, and jackets. She went on to say that Hannah should also be in isolation. She told me that in all her years of experience she had never seen anything like what is on Hannah's body. She did tell me that the correct diagnosis is Severe Radiation Dermatitis. I explained to her my feelings that at this point Hannah was receiving care from a skin care nurse who asked another skin nurse and through brain storming came up with this latest idea. I explained that this was the third attempt to try and find the way to treat something that no one has ever seen before and that I was scared and concerned that perhaps this wouldn't be the right treatment either.

Hannah's fever ate up all the red blood cells that she was transfused with Tuesday. Now she has to have another transfusion tonight. She was given platelets today and when the CBC results came back today they were much lower than Tuesday's after the transfusion! There is great danger in not having any platelets and very little if any white blood cells. Since she is running a high fever we know she has an infection going on somewhere. No one seems to know if it's due to the burns or an infection. The right type of infection at this point could be life and death for Hannah. The skin care nurse here at Glennon was off today and when the nurse that's never seen the burns before today was going to be the one to make the determination whether Hannah was better or not really upset me. I felt the least the skin care nurse could have done was to be the one to change the bandages and make that decision.

After pondering this all afternoon I got busy making some phone calls. A friend of mine who works in Radiation at another hospital came to see Hannah today and screamed when she seen her back. She told me she had a personal friend who actually worked with Dr. Norton (Hannah's Radiation Oncologist) at one time and she would be happy to contact her. After speaking with her friend I was informed that what has happened to Hannah is extremely rare. In her career she had seen one case similar to Hannah's but it didn't sound like (based on a phone conversation) like it was nearly as bad as Hannah's. This doctor said she was at SLU a year ago and had a huge seminar on the treatment of severe radiation burns. This doctor said she trained the Dermatologists at SLU and hopefully they would have shared the information with Glennon's Dermatologists. Bottom line was to immediately seek the advise of a Dermatologist.

When I asked to have a Dermatologist look at Hannah it really stirred up a hornet's nest . I don't think anyone appreciated me "playing doctor" and "making my own decisions about Hannah's care". I explained to the few here at Glennon that was having this problem that Dr. Kelly hadn't seen Hannah in two days now. He checks her charts and such but hasn't physically come in to see her. Sure he writes orders and knows what's going on but he hasn't been around for me to ask him what to do about Hannah receiving care that no one was quite sure if it was even the right care. I felt I needed to take matters into my own hands and ask for a second opinion.

When this information got to the skin care nurse at Glennon who is currently treating Hannah she called me on the telephone. She told me that if I were to have a Dermatologist look at Hannah that she was out of it and would no longer agree to see Hannah. This didn't go over very well ... and to make a long story short I told her to do what she thought she needed to do and I would do the same.

About an hour later I was "informed" that Glennon's Dermatologist would be up to see Hannah first thing in the morning. We'll go from there and see what this physician has to say. If I'm still not sure in my own mind about her treatment and care I will make further inquiries.

When her bandages were changed today there was no change and it really hurt her this time. The new layer product they put on her to protect the ointment stuck like concrete to her back. The nurse soaked and soaked it but still it was hard to get off and she had to pull and soak then pull it and soak it some more. I just can't stand it for Hannah anymore. It seems totally ridiculous that she's having to suffer like this.

Tonight she was complaining that her throat hurts and she's started coughing too. Guess we'll have to wait and see what tomorrow brings.

I'll keep you all updated.

Love, Cindi and Hannah

01/30/2004
 Hannah was very sick this morning with a bad tummy ache and complained of being tired. She was up last night every 45 minutes to go to the bathroom! This morning her nurse asked if she could please have a catheter so Hannah could get some rest. The answer was no, it's too much of a risk of another infection.

We did find out that she tested positive for CDIF (sp). It's an infection produced from the gut and is usually caused from prolonged use of antibodies. This could explain the diarrhea but they don't think to the extent that Hannah has it. The doctor told me this morning that they were trying to get GU up to see her right away ... I told him good luck because they've been called every day since Monday and still haven't showed up. Dr. Chu mentioned that the radiation may have caused some internal damage which would be what's causing the urine frequency and diarrhea. She does not have a bladder or urinary tract infection though so I can't imagion what the problem could be.

Her appetite continues to be poor but what I've been able to do is to tell her she has to eat one thing on each tray and she got to decide what that was. It worked! This morning she had a banana, then an ice cream sandwich for lunch and for dinner mashed potatoes. At least it's a start.

It turns out that I was right about Hannah's burn treatment. When Dr. Bree from Dermatology came to see Hannah today she wanted to change her care and treatment completely. No, our skin care nurse did not appreciate it at all. She was snooty and acted like a child in my opinion. What the doctor said made since and I agreed to the plan. She had never seen this before either, however, she knew it existed and had done some research on it plus, her boss was going to be involved in the treatment plan and follow up himself. The medication and coverings for the burns is not something that can be found stocked in a hospital. It can only be ordered and the Dermatologist was able to have it flown here to be used first thing in the morning. I didn't have the opportunity to talk with her the way I wanted to because the skin care nurse was there and she was busy trying to convince the doctor was she was right which left very little time for us to talk about the why and how of it all. When we were finished I was so relieved and felt much better. I feel certain that she's in good hands and is receiving excellent care. What a weight that was lifted off my shoulders!

After her morphine wore off (from having the bandages changed on the burns) she felt better too. She sat up in bed and started working on a art project. She's much more talkative too. Her fever hasn't been over 101 today either. Believe it or not she is really looking forward to getting a citz bath tomorrow. In the beginning she said NO WAY, but now she realizes how extremely painful it is to have those burn bandages removed and cleaned. We've been talking about what she will do while sitting in the water for 20 minutes.

Their still drawing more blood cultures to see if anything else is growing. Today she was transfused with platelets again. I'm trying to get her up and out of bed ... but she doesn't want to. She's very stiff and complains of aching all over. Maybe by tomorrow the diarrhea will ease up enough that she would feel more confident about walking around.

Thank you all so much for your prayers. I know there are many e-mail messages that I need to return ... and I will hopefully this weekend when things quiet down up here on the cancer floor.

All our love ... Cindi and Hannah
01/31/2004
 Hannah has made progress today. Her burns are looking better. I'd go as far as to say 10% better. The new medication and adhesives were shipped last night and arrived and applied this morning. We tried using a different way to cover the medication and adhesive and we're having a hard time with that. Because she is on the potty constantly she undoes everything we've just done! It's so frustrating for me and Hannah and the nurses! Poor Hannah has tried to just sit on the potty chair and put her head down and sleep like that ... but I can't stand it.

Don't get me wrong ... I LOVE Cardinal Glennon but I am loosing my patience with the GU department. Dr. Kelly spoke with them Monday, they were supposed to see her Tuesday, they were paged and promised to see us Wednesday after surgery, the resident did popped his head in the door Wednesday night and promised to see Hannah Thursday, I complained to Dr. Kelly Friday about it and was assured they would see her that day. Today is Saturday night and they still haven't been in to see her!!

Today I got her to eat a little bit more than yesterday and Daddy and Aunt Rita got her to get out of bed and walk around the entire nurse's station two times. She went into another little girls room this afternoon "to make friends with her". Her nurse came and got her and told her she had to go back to her room then explained with the CDIF infection she couldn't be her usual normal social butterfly self. Hannah is really disappointed now. She LOVES people and making friends. She always ends up with either herself in their bed on them in her bed playing or making something. We have her princess canopy up here this trip because we're going to be here awhile so the little girls really want to come in her room!

Tonight she got to have her favorite nurse ... Krazy Katie! Because she switched to weekends and nights we haven't seen her in awhile. Hannah was so excited and to tell you the truth so was I ... we missed her!

This afternoon a nurse named Michel and Hannah, Terry, Aunt Rita and I got the "Hannah's Hunk of Wind" out and were making "farts" with it. That certainly cheered her up and everyone else too!

I laid down around six this evening and feel asleep immediately and slept like a rock with all the noise going on. When I finally woke up I had missed Amanda (Sasha's sister) and Shelley Friedman (who's in the middle of trying to make Princess arrangements for her room) and their daughter Faith! Yikes!! I must have been tired. Daddy offered to spend the night with Hannah tonight but he doesn't know how to do the dressing changes and squirt her off so she opted for Mommy again.

Thank you all for your many, many prayers and for placing her on all the new prayer chains. We both appreciate it very much. I'll keep you updated but please know she's doing much better than she was when she came in Monday.

All our love, Cindi and Hannah