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February 2004
02/01/2004
 Last night was a repeat of the past seven nights. She is such a little angel though, she never complains. Dr. O'Connor was making his rounds about 10:30 this morning when Hannah decided to throw him a curve ball. Yesterday towards evening her urine was beginning to look more like urine than blood. This morning she went right back to the pure blood and clots. He ran another CBC and her counts came back quite low but not as low as 2 days ago. He's going to wait until morning to decide whether to give her another transfusion or not.

She made alot of progress today ... she sat up in bed and done some homework then she walked another 3 laps around the nurse's station, and even drew some pictures. Her dad took her down to the gift shop and let her pick out some candy this afternoon and she really enjoyed that.

Her burns are looking better every day, and today she didn't require morphine to have the bandages changed ... the new dressings are that fantastic!

Hannah is absolutely amazing! I must have heard that a hundred times today. There are no words to describe how this child takes and takes and takes and just continues to smile and make the best of it. No wonder she is so loved by everyone who's ever met or known her and those who've never met her but heard about her. She is a shining star and we can all learn so much from this amazing little spirit.

Thank you for all the prayers you continue to send up ... it's no wonder she's so amazing, she has a prayer chain that stretches straight to God's ear.

Love, Cindi and Hannah

02/03/2004
 Hannah's back and bottom is making huge strides in healing. Everyone is very impressed with the products that we're using. She doesn't complain of any pain, only of itching!

We started developing new problems yesterday and the doctors are once again shaking their head at this battle. She started to swell just a little on Saturday and by Sunday she was quite swollen. Yesterday they decided to start looking into what it could be and by the end of the day just didn't have an answer. This morning though she was very swollen and by afternoon looked just like I did when I was in the last few days of pregnancy with her ... terribly swollen. It hurts her to walk and bend her legs. It's impossible for her to wear any kind of socks and her upper tummy looks like she's swallowed a small watermelon.

Because she has literally stayed on the potty since being admitted last Tuesday Dr. O'Connor didn't want to give her a water pill ... but decided we had no choice. After her platelet transfusion this evening (thank you Gene) she filled her "hat" up and went 1800 cc's and that translates to alot of urine! However, her feet, legs and tummy haven't changed at all.

When we weighed her this morning I was shocked ... she weighed 58 pounds last Monday and Today she weighed 68 pounds! Plus she has hardly ate all week. I know by morning there isn't going to be any change because it was only a water pill that worked for 2 hours.

Dr. O'Connor did say that he thought it was probably related to radiation. He said it would be something more "mechanical" like lymph's and/or veins. He went on to say that Thursday morning at Tumor Board when all the surgeons and radiation oncologists, specialists, etc. are having their meeting that Hannah would be the topic for sure.

I"ll let you know what's going on tomorrow evening.

Love, Cindi and Hannah
02/07/2004
 Hannah is doing much better. She was discharged yesterday evening and we are home with Mommy playing the burn nurse part.

I only have a few minutes to write on the computer right now ... but I promise I'll catch you up tomorrow.

Love, Cindi and Hannah
02/10/2004
 Trying to catch up with some of these e-mails ...

These pictures were taken a couple of weeks before Christmas. Denny is Kitty's half sister ... and Kitty is my first cousin. Denny took Hannah's illness very personally and went way out of her way to help make Hannah's Christmas (and the children on 4 North) very special this year. Denny belongs to "Gateway to the West" ... a Harley Davidson Motorcycle Club. When Denny told the story to her fellow members they all decided to pitch in and raise cash donations for our family for Christmas as well as the many, many, fantastic gifts!

These are the most kindest people you'll ever find anywhere. Thank you Gateway to the West ... we love and thank you for your generosity this holiday season!

If you go to their website at www.gatewayhog.com then scroll down to events.

Thank you Denny and Gateway to the West for bringing so many smiles of happiness and joy this holiday season! Love, Hannah
02/16/2004
 I'm still trying to find time to update you on everything that's been going on and what's happening now ... it's hard trying to find the time right now though ... I'm swamped!

Last Thursday Hannah was supposed to be admitted for Chemo ... we were ready to go upstairs when Dr. Kelly called me back in and told me that her white blood count was still quite low. He said it was because of the radiation burns. Burns take tremendous amounts of white blood cells to heal wounds. We had to reschedule for Tuesday (tomorrow) and hopefully her counts will be back where they're supposed to be. It should only be for 24 or 48 hours. He is still giving her a reduced dosage at this point.

Dr. Kelly also informed me that Hannah will be subjected to another major surgery, just like the first two. I was so shocked that I couldn't even speak. He said the recent CT scan showed that the portion of the tumor that wasn't able to be removed in November was still visible and would have to be removed. When I caught my breath I asked him why because we were told the radiation and further chemo would kill the remaining 5 - 10% that they couldn't get the first time. He would only tell me that if it's not removed then we will never know if it is dead or not on the inside. Even though the outside of the tumor appears dead, there could still be live tissue on the inside that we aren't able to see. I asked him what the odds would be of this tumor being completely dead and he told me he would have to get back with me .... but that they were in Hannah's favor.

Terry and I are bucking even the thought of putting Hannah through another major surgery, and they are going to have to convince us tremendously that it is absolutely necessary. After her second surgery we promised her she would never have to go through this again. I'm not sure that Hannah and I could do it all again ... honestly. Dr. Kelly told me this surgery would be within the next 2 months or so which leaves me very little time to do my research.

On a much lighter note ... last Friday she got to go to her Valentine's Day party at school. She was so excited! She must have asked me a million times if it was time to go yet. She really enjoyed writing all her little cards out too. When we got to school I thought the room smelled really, really clean ... come to find out her teachers had sanitized the whole room and all the kids' hands too! They are so wonderful and we are so lucky Hannah goes to Staunton Elementary!

Hannah is feeling good during the day but complains every night with pain. Not sure what's going on with that until I talk to Dr. Kelly tomorrow.

The best news is Hannah gets to return to school after coming home from the hospital either Wednesday or Thursday! It's going to be just like the first day of school for her again. She's already picked out her clothes for that day.

For Christmas my sister bought Terry and I a night at the Adams Mark with a Sunday Brunch. He made immediate reservations for Valentine's Day. When I told Hannah she would be staying with Sissy and/or Grandpa over night she lowered her head and puckered up and said, "Ok Mommy". Terry seen this and later called from work and said he just couldn't stand it and that we would take Hannah with us. I gave her the phone and she was so excited ... her eyes lit up and she had that magnificent smile across her face and asked if she could go swimming too. We got up late Saturday morning because Hannah was up much of Friday night so we were off to a bad start. I had this feeling that we should cancel it but couldn't convince Hannah of it. We stopped at my sisters house on the way to the Adams Mark and she was not very happy with Terry at all! As usual, he wormed his way out of that and as we get right on top of the Poplar Street Bridge this dummy decides to get out of his lane and into our lane without bothering to look to see is there was anyone in the lane he wanted to get into. Yup, he hit us broadsided and mashed my van into the guard rail that protects you from going into the Mississippi River! I just closed my eyes ... Hannah was sleeping and I didn't think to wake her up before he hit us ... but she woke up screaming when she heard the "boom". We're in 5:00 pm traffic and there's a million cars and trucks behind us and there's no where to pull over ... and the wind is whipping the van around a little and Hannah and I are looking over at the Mississippi River and asking one another if we should say a prayer! I called 911 and prayed that the traffic behind us would see the van with the flashers on in time not to cream us ... we couldn't get out of the car just in case either! Of course the dummy that hit us is parked 3 car lengths in front of us so if we get creamed he won't be hit! After 5 minutes I called 911 again and this time they transfered me to the Illinois State Police because the Missouri State police said it wasn't their jurisdiction ... but didn't have enough brains to make the call themselves! I was so mad! If I hadn't called back the second time who knows what would have happened. In the end though it all worked out. The state trooper told us to move our cars off the highway and he wrote the dummy a ticket for improper lane usage ... all the while he's screaming that it was our fault! It all the sudden became funny and we all started laughing.

There was a monster truck show at the Dome the same night and something going on downtown too ... plus it was Valentine's Day. The wait for dinner anywhere was 3 hours! We were all starving and decided to wait. We leave for the Adams Mark and found it was another 3 hour wait just to get to Valet Parking (and that's all they offer)! Yikes!! Because we weren't there by 6:00 pm they wouldn't hold our room reservation so we had to take what was left! It didn't matter that the reason we were late was because the Adams Mark was not prepared for the tremendous crowd that night, it caught them by surprise. Terry and Hannah did get to go swimming though. She had a ball! She got so much pleasure out of splashing her dad but when it came time to get splashed back she would remind him that she was sick and he had to be careful with her! She was so cute and had so much fun that she would have been allowed to do about anything she wanted to and we would have let her.

Thanks to those of you have offered to "be brave and shave" and to those of you who are finding people to sponsor you. Thanks to all who are willing to help with the auction items and donations too. I even got a e-mail today from this wonderful lady that I've never met offering to send out my thank you cards! That's something that I'm so upset about because there is so many that I could never find the time to send them all.

Remember no news is good news and I'll get back to you when I can.

Love, Cindi and Hannah
02/17/2004
 First thing this morning we drove to the Costas Center and Hannah got to see Tom the "toot tutor" for a little bit. She was so excited and begged her nurse Marsha to let Hannah be the last one seen by Dr. Kelly so she could stay out in the playroom with him as long as possible! Her blood and urine tests were taken and once again her white and red blood cells were low. She had blood in her urine too. Her ANC was up from what it was Thursday so Dr. Kelly made the decision to let her have chemo today.

It always seems to take hours to get us upstairs and orders to be written and Chemo actually started. By this evening when Cole, Paige and Shelley came up to visit us they got to see her in her beginning reaction stage. She starts sneezing immediately and it usually lasts for a couple of hours and by bedtime her face and eyes are swollen. She gets the usual red rash that appears then disappears all over her body. Tonight she done something a little different than in the past ... she started acting giddy and her eyes were real glassy. The only side affect from that was she laughed alot! Unfortunately around 10:00 pm she started the hysterical crying with migraine headache symptoms. The resident came up and sedated her ... which helps immediately. It took forever to get her methadone up from pharmacy and she was screaming and crying with pain. Eventually she fell into a deep sleep and with fluids being pushed at 125 a minute she had to pee! Because she can't get awake fully and make it to the bathroom in time she becomes angry and starts the screaming all over again! It's so unlike what her normal behavior is that it seems hard to recognize her sometimes.

We're supposed to be out of here in the morning (which means late afternoon or early evening around here). We'll be sent home with fluids and she's really hoping she can go to bible study with her friend Joshua tomorrow evening.

Tonight Hannah got another gift. This one was from Cole ... and he is one of the many that is helping to renovate her old bedroom into a new Princess Castle. He brought her this beautiful wooden plaque that says, "Hannah's Kingdom". Of course we both loved it and Hannah said she wants it to hang on the door so everyone can see it before entering her room.

Will keep you posted ... I plan to return some of your e-mails tomorrow.

Love, Cindi and Hannah
02/18/2004
 We are finally home! We were going to get out of the hospital by noon (and that's good for us) but after asking for one last time about giving Hannah red blood they decide that they better ask Dr. Kelly to make sure. Seems like there was a real mix up ... Dr. Kelly had left orders with the resident for red blood and for GU to see her before we left ... but the resident forgot to write the orders for it!

It takes 4 hours to transfuse Hannah and another one to two hours to take blood then seen it off to be typed and crossed then brought up from the bank blood etc. We finally left the hospital around 8:30 pm.

Hannah is tired and has dark red circles under her eyes. She's pale and unusually quiet but not complaining of any pain ... so all is well.

Apria came in and set up our fluids at the hospital before we left this evening so Hannah will be up alot tonight going to the bathroom. She can't go to school with the fluids so I think I will keep her home until Monday! Her birthday is the following day so she is going to have a fantastic week. Good for her!

Will keep you posted.

Love Cindi and Hannah
02/26/2004
 Just a quick hello to let everyone know Hannah is doing good. Took her to the Costas Center today and her counts were low but still good! Both Dr. Kelly and I are very pleased with how well she's doing. Her gums were starting to bleed and bruises were popping up everywhere ... but ... not to the point that her body couldn't rebound on it's on!

Took her this afternoon to get her birthday pictures taken. A sweet friend of mine and Hannah's lives in the country, surrounded by trees and evergreens, the perfect back drop for the photograper who volunteered her time and film to do these for us! Now, I just need to get them developed, copied and sent out to all of you who would like one.

Time seems to be a luxury that I just don't have right now. I'm trying though! Hang in there with me.

I have lot's of St. Baldrick's stuff I need to send out and am hoping to try and get that set up tomorrow. There is a computer glitch in the system and for some reason no one can find "Hannah Banana's Baldies". I think they were supposed to fix it today though. So keep trying ... and thank you very much to those of you who are going all out to help support this terrific cause and organization.

Love, Cindi and Hannah