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June 2003
06/12/2003 - Note from Grandpa Fred
 What a girl! Today she used a walker, operated it like a Pro. Thank God she is urinating on the potty. Still not sure when she will go home. Eating and drinking some better. Praise the Lord. God bless all. Keep up the Prayers, Love Grandpa Fred
06/13/2003 - Early morning update from Cindi
 Not much new to report today. We were hopeful that the kidney tubes might come out today, but we're still waiting on the radiologist who put the right one in to look at the catscan and x-ray results from yesterday. Hopefully we should know something for sure tomorrow. Dr. Gale did tell us that he was almost positive the right one would have to stay in and was very hopeful the left could come out. Dr. Gale also told us to be prepared to take Hannah to surgery tomorrow to replace the left one if the radiologist does not agree that it can come out.

I had asked for a walker for Hannah yesterday. She really didn't want to use it but bless her heart she did for mommy today. We took three little laps around this floor and she cried the whole time she was walking. I just wanted to pick her up and love her and make it all go away. I had some concern today while she walking, she turns her left foot out now and she has a slight limp. Her physical therapist didn't think much about it though. She also told Hannah and I that she could only have the walker for 2 days and would have to go it on her own after that. I don't think Hannah will be ready for that though. She still gets dizzy and is very weak. Guess we'll just have to see how she does.

Today she was so cute when her recreational therapist asked her to go down to the play room with him. When they got there he asked her if she wanted to play with the doll houses and furniture and Hannah told him "no" that she wanted to make her daddy something for father's day. He went downstairs and came back up with one of those cast molds and imprinted her hand in it. Almost made me cry.

They are weening her off her morphine trying to get her ready to go home, and she seems to be handling that real well so far. We are still concerned about her lack of eating. She is on a very watchful calorie count so we'll just have to wait and see about that too.

Please continue to keep Hannah in your prayers. She is making new strides each day and her progress is very hopeful but she has such a long road ahead of her. Her next big dose of chemo is this Monday and I'm sure we will still be here for that. If on the rare chance we would get to go home she will have to be readmitted Monday and I'm not sure if that will be for 2 or 3 days.

Have a great weekend.

Love Cindi

06/13/2003 - Late night update from Cindi
 Today we got some good news! Hannah was finally taken down this evening around 6:00 PM and got the malfunctioning left kidney drain removed!!

Yesterday the dialysis nurse came to flush Hannah's lines and found one of them to be totally clogged!! So while she was down having the tube removed surgery came over and removed that direct line too. The doctor's made the decision not to have it replaced at this time. Her next big round of chemo is this Monday and we are all going to hold our breath and hope the kidney's tolerate it this time.

The right kidney tube has to stay in still. I'll admit I was disappointed I was really hoping we could loose them both ... but I was allowed to stay in the room while the radiologist performed the procedure and I could see on the screen how blocked the right one still is. Maybe one or two more doses of chemo will shrink the tumor enough so that we can loose this one too.

I have to add this story too ... last night some very good friend's of ours came up to visit Hannah and before they left we all said a prayer with Hannah that God would heal her ... and as they were leaving I told them I would give anything for Hannah to just start eating good ... and Joan said that we should pray and ask for this specifically ... so last night when Hannah and I are saying our prayers together we asked God to bring back Hannah's appetite ... and guess what, she ate almost everything on her tray this morning! I was amazed. I didn't even have to beg or threaten to take away The Crocodile Hunter!! So I have learned from Joan that we need to be a little more specific when we pray!! Hannah is proof that it works.

Love, Cindi
06/14/2003
 Today it was decided that I would learn how to flush the remaining kidney drain and her broviac tubes. I also have to learn how to take her blood pressure. All this is in anticipation of her coming home!! The doctor agreed to let her leave the hospital tomorrow for 4 hours. The plan is to have our chemo treatment Monday morning and be discharged on Tuesday. That's just the plan though ... but I'm going to be adamant about sticking to it!

Today she was taken off her morphine drip and IV fluids, which means no more dumb polls to have to drag around with us! The goal is to have her taking all her required med's by mouth.

This afternoon both Grandpa's, sissy and myself WALKED Hannah down to the outside patio where she ate her lunch. Then she got to go to the gift shop and get a candy bar plus a soda in the cafeteria! Between the two grandpa's she could have had one of everything if she would have wanted it.

She is definitely getting better.

Love, Cindi

06/16/2003
 Hannah and I got to leave the hospital today from 1:00 pm to 8:00 pm. It was father's day and she had made her dad the most beautiful hand impression out of gel and plaster and was excited about giving it to him. She was a little more fragile than what she thought she was though. She was so cute in her little white skirt and favorite blue ice cream shirt with matching sandals and of course her hat to top it all off! She insisted on not letting anyone see her head and certainly didn't want anyone to see her urine bag ... which led her nurse and I to come up with some very creative ideas. Finally after 2 hours of preparation we were out of here and she was going first class in her little red wagon.

We went to my nieces house in Litchfield where there were lot's of people and relatives and ton's of wonderful food! Hannah didn't want to go outside so we hung out in the living room and painted a little heart for her dad and put tattoo's on Hannah and all the other little girls' hands.

Hannah was told repeatedly that she would have to eat and drink when she left for the day, but when it came right down to it she wouldn't. I was very disappointed in her. She managed to eat 3 deviled eggs and that was it. She only had 3 sips of water the entire time. Then she laid down on the couch and rested for awhile.

The nurse had given me her pain pill and told me she could have it after 1:00 pm and I kept begging her to take it throughout the entire day, but like everything else she refused.

When we left Litchfield we stopped at our house before going back to the hospital. Sissy and Papa had all her kittens out on the deck for her to see and play with. She loved that so much! It was the happiest I've seen her in a month. After that she went to Papa's while mommy checked some things out in the house and when I went to get her she was eating a Popsicle, had just finished 2 big pieces of watermelon plus a fudgesicle.

We decided to get a quick bath at home (instead of a sponge bath in bed at the hospital) and ... well ... that was just too much for her. She cried and cried and cried. Then after the nightmare of the bath and getting her into clean fresh jammies you would think she would be too worn out to cry anymore ... wrong! She threw an absoloute fit not to come back to the hospital! I was so upset with her. She was absolutely screaming and crying so hard and Papa was there only trying to help but making it ten times worse .. and Terry had to finally pick her up and put her in the van.

I was glad that just before her bath I made her take her pain pill. I knew she was exhausted and in pain and dehydrated on top of everything else.

The ride back to the hospital was in total silence though. Hannah knew Mommy was very upset with her. With Hannah, silence is the most effective way of getting your point across. We were about 10 minutes from home and she was out like a light. She slept all the way back to the hospital and woke up totally pain free and refreshed. I on the other hand was worn out, upset, and very worried about her lack of fluids. When we got to her room her nurse was all over her checking her out for everything under the sun! I'm not sure what they were looking for, but every bandage and dressing was checked and double checked and they were looking down her throat and then another nurse came in to take her vitals ... and then they asked the question! What did little Miss Hannah eat and drink today! I told them to ask Hannah that question. It was wonderful!! She shrunk down in her bed and pulled her sheet over her head and tried to get out of getting hooked up to her IV Pole again ... but of course it didn't work. Her nurse knew I was totally frazzled and took the upper hand with Hannah. She went and got this high protein orange shake that Hannah absolutely hates and stood over her and insisted Hannah drink the entire carton! I was trying not to laugh ... she deserved every last bit of what she was getting. Little stinker. Hannah also asked me if this was the last of it or if I would tell her doctor about it in the morning. I assured Hannah that WE were the adults and knew what was best and of course I would tell him, first thing when he walked in the door too! She's a little worried about it tonight I think.

Well that was our Father's Day and first day out! Hope your's was good and hope everyone enjoyed the beautiful day.

Love, Cindi
06/17/2003
 Hannah woke up and found herself in hot water ... from yesterday when she refused to eat or drink or take her medicine. She heard about it from her morning nurse (her favorite), the house doctor and of course Dr. Gale. Believe it or not Dr. Gale was mad at Hannah! Then I had to listen to it from Dr. Gale myself! I explained that I had tried and tried and tried to get her to eat and drink and take her medicine. He asked me if I needed to be reminded who the mother was and who the child was. Yikes! He's absolutely right though. Now I have to go from being the worried sick mommy to the mean mommy when it comes to eating, drinking, and taking her medicine.

After loading her up last night with tons of fluids she was able to have her big round of chemo late this morning. She's looked extremely pale all day (even before chemo). She's started having terrible headaches or maybe I should say migraines. She got the hives real bad after chemo this afternoon but it was so odd ... they would just pop up and within 5 seconds go away. Every time we brought Dr. Gale in to see them they were gone! He told us no way could they be hives because she wasn't itching. Her nurse and I believe other wise though. We actually got to see them. Then later tonight there were these red bumps all over her tummy and they don't look like hives ... more like pimples. So I don't know what she's got going on.

She has just fallen in love with the playroom here and every chance she gets she heads that way. Her silly-funny-crazy nurse Katie had a neat idea to have a Brittany Spears dance party tonight. We took the boom box up to the nurse's station and danced away to "Oops, I Did It Again". Hannah was so cute up there dancing away with all these silly nurse's and her mommy. We had a camera but it would have been nice to have had a camcorder.

So, Hannah supposedly gets to go home tomorrow. I've been in training for the past several days and finally think I can handle flushing her nafrastamy tubes, her broviac lines, and taking her blood pressure. They had a big surprise in store for us today too. Since Hannah didn't behave well on her day out she has to go home with an IV line, plus, I was told this morning that I have to train to give her a daily blood pressure shot! Yikes ... I HATE needles! Hannah HATES them even more than I do, so this should be fun!! Hannah is so smart though, she told me that it wouldn't be so bad having an IV after all because we can just push the blood pressure medicine through that line. She is too smart for her own good. Since I wasn't trained today on giving her these shots (because the order was left but not the dosage) I'm still hopeful that a few practice shots in a orange tomorrow and we will be on our way.

Tonight she started throwing up, alot. Her nurse thought it was a little too soon to blame the chemo ... but then reminded me that Hannah was their little mystery girl. I guess this welcomes us into the real world of chemotherapy treatment. Yulk.

I hope to be home tomorrow. There are lot's of new orders for home health though...I sure hope they can quickly accommodate us. I miss my bed.

Will keep you posted.

Love, Cindi
06/17/2003
 Well we didn't get to go home today. Dr. Gale said maybe tomorrow, just depends on what Hannah decides to do about drinking. I'm working really hard and I'll be lucky to get the 40 oz down her that is required everyday. Poor baby threw up her dinner last night and breakfast this morning which makes this even harder!! Dr. Gale said we just can't take the chance of damaging her kidney's any further.

Terry and I got to learn how to give shots to an orange today. I HATED it so much. I'm thinking her dad can do this one little thing everyday. He had no problem sticking the nurse today ... I, on the other hand, was so scared I was going to hurt her that when I stuck her with the needle and it wouldn't go in easily I started to pull it out and she said NO and I had to repush it back in and thought I was going to faint ... I'm not kidding! Oh, get this ... Hannah decides she wants to go down to the conference room with us for our orange training just so she can make sure we're learning how to do it to her the right way. She starts really getting into this ... and after the nurses allow us to torture them Hannah suggests mommy and daddy take their turn at getting a shot so we can see how it feels when she gets hers!! Oh my gosh!! She was absolutely right to ask us to do it, but it was the last thing I wanted to do!! I'm sitting there thinking about what a huge baby I would be if I didn't do it and then I thought well when it comes to needles I AM a big baby!! But I knew for Hannah I should be "a big girl" and "show how brave I am". So I agreed to do it and when she jabbed me it hurt so bad I wanted to cry! Of course I had to sit there and tell Hannah how easy that was and how it didn't hurt! My arm, shoulder, forearm, wrist and hand are still hurting!! Terry wouldn't even take his turn at all. Hannah had the added bonus of the numbing cream too. I'm thinking this is going to be one of those thing I pass on to Dad ... whether Hannah or Terry like it or not.

I had to remind the doctor's again about Hannah's nuclear test... they keep forgetting about it. We're going to see if SLU can work us in tomorrow before we go home. Praying for good results from that test.

So hopefully we'll try to go home tomorrow. Thanks again for all your prayers and support.

Love, Cindi
06/18/2003 - Note from Grandpa Fred
 Well this is the day we all prayed, and hoped for! Hannah went home this afternoon, Thank God! Now we need to Pray she will drink, and eat, as her doctor says she needs to do. Also Pray for Cindi, and Terry. They have to give shots, flush her tubes, change her dressings, check her tempurature, and most of all have a lot of patience. I have no doubt the love is there but we know a little Praying goes a long way, so please do not praying. God Bless All. Love, Grandpa

06/19/2003 - Hannah's home!!!
 Finally ... we are home. SLU was able to work us in today and that test took over 3 hours. Then we had to wait for home health, etc. Thank goodness we are here now.

I'm really tired so I am going to make this short. Tuesday we have to go back for a check up. They are expecting her counts to start dropping this weekend ... and since we have to settle in and set some ground rules we thought we might hold off on going anywhere or having visitors until next week sometime.

Thanks again for everything ... each and everyone of you played a big part in Hannah being able to come home.

Love, Cindi

P. S. Thought I'd send these 2 pictures, the graduation picture was taken the day she was admitted to the hospital. It's amazing how healthy she looked in this picture isn't it? If you look real close you can see how large and purple her right leg was turning. The other of course was taken when we got home today.

    
06/23/2003
 Just jumped on here a second ... will e-mail more tomorrow. Had a good weekend with Hannah. She is so fragile and weak. We laughed alot with her this weekend ... and I got to hold her finally ... felt so good to both of us. Going to Cardinal Glennon Tuesday for a booster of Chemo (hopefully). Will all depend on her blood work and blood counts. If she is able to get it we will only have to stay 24 hours and then we'll come back home. Just remember no news is good news maybe? What do you think of that idea?

Love, Cindi
06/24/2003
 Hannah has been spiking fevers off and on this evening. Her oncologist and I have been seriously considering taking her back tonight and admitting her. BUT because she is eating, drinking and playing hangman with Brian and Lisa we really are baffled. I'm going to take her temp again at 11:00 PM and if she is at 103 I will take her. If she is still in the 102 area I will just continue to monitor her closely. I do have to take her at 7:30 am for sure though. She will be admitted at that time too. Yes, the no news is good news e-mail is a good idea. Her pediatrician called me at home this afternoon and we talked for about 30 minutes! This woman is so concerned about Hannah and our entire family. What a wonderful doctor she is. Well I gotta go be nurse again ... so I'll talk to you soon!

Love, Cindi
06/25/2003
 After checking Hannah's temp. every hour on the hour I found she was able to stay home in her own bed last night. We were up and at Cardinal Glennon by 8:00 am this morning and she was still running that high temp. The doctor on call told me last night she would be admitted this morning and probably wouldn't be given her booster ... I was so disappointed. They even had a bed reserved for her and the doctor's assistant and I were making all the plans when Dr. Kelly came in and threw us all for a loop! Her blood count is extremely low BUT was hopeful because Hannah is just beginning to start making white blood cells on her own. He kept us there until 4:00 pm, loaded Hannah up on antibiotic's AND even gave her the booster of chemo!! He went on to tell Hannah that if her mommy wasn't such a good nurse that he would not have agreed to let her go home with the high fever she continues to run. He also told her not to tell anybody that he broke one of his rules for her either!! Hannah just grinned ear to ear.

We do have to go back Thursday morning first thing again, just to make sure she's doing ok.

THE BEST NEWS OF ALL ... THE BONE SCAN WAS NORMAL!!!!!!!!

The nurse and I both started crying when we got the fantastic news. Prayers are being answered, please keep sending them up!

Love, Cindi

06/25/2003
 Well I guess we can't win them all. Hannah continued to run high temps last night and even though I could bring them down with Tylenol they were still persisting. This morning when she cried that her back hurt (where the right kidney is) I knew we weren't going to be as lucky. Sure enough ... I was right. We came in this morning and found that yesterday when the cultures were sent down she started growing bacteria. The antibiotics that she was given yesterday isn't enough. She is back here on the 4th floor and is receiving more antibiotics. We had the kidney ultrasound first thing and it looks "unchanged" which means the infection is near the tube and/or line. I'm so happy it's not the kidney itself that is infected.

We will have to stay here a few days ... but on the bright side Hannah's body is starting to make it's own white blood cells ... so NO more shots for at least 2 weeks! She even got permission today from her doctor to start giving them to herself! Yikes! I asked him who would be conducting the training and he said the nurses could do that!! I was VERY grateful for that ... because THEY are the one's Hannah gets to practice on!! The doctor did say with mommy's assistance ... but that doesn't mean she can practice on me!! She was disappointed, said she wanted to poke me!!!

So we shall see what the next few days will bring us.

We are in room 421.

Love, Cindi

06/28/2003
 Hannah was filled up with antibiotic's and is now running a low grade fever. They gave her some platelet's and red blood while they were at, but just as a precaution. They said sometimes where your body runs a fever you can give off a false positive. Hannah's Aunt Rita had taken the afternoon off Tuesday and spent 2 hours at the Red Cross donating her platelets for Hannah to have Thursday. We were both just crushed when we found out Hannah couldn't have them because they were "damaged in processing". I'm not sure how many of you know what's involved in donating platelets ... but it is a very big deal and not many people will offer to donate theirs.

She has been in such a good mood these past few days. I have to tell you this quick story ... on the way to the hospital Wednesday we had to stop at a "gas station" to fill up and Hannah wanted to come in with me and pick out a drink. As we're passing this isle Hannah spots this little plastic container of "Poose". It had pictures of silly people all over it and I thought is was silly putty or something. Hannah opens it and starts playing with it in the van and is laughing so hard. This stuff is like silly putty but when you push it into the little plastic container it sounds exactly like someone who is "farting". I was amazed at this child ... she would have never been this silly six weeks ago! By the time we got to the hospital we were both laughing so hard that my side hurt! Dr. Gale is a real funny doctor that Hannah just adores and when he came into her room she had it hiding under a blanket and asked him to PULL HER FINGER!! He was laughing and surprised because he would never imagine little Miss Hannah doing something like this. Finally, he pulls her finger and she pushes the stuff in the jar and it's a really big loud fart sound and the 3 of us were just rolling with laughter!! From there it just escalated and the whole Costas Center and 4th Floor got involved and we had all the nurses and other doctor's involved too .... to make a long story short we had a farting contest up at the nurse's station last night. Hannah called Daddy and he stopped at the same gas station and picked up 6 more containers. Crazy Katie and Jason just KNEW they were going to win this contest for sure! They kept coming in Hannah's room and pushing their stuff in their containers and their's were PRETTY BIG!! Hannah was determined to win though.

Later in the afternoon the radiologist came in to change Hannah's tube bandage and it was rough on her. She was so scared and crying and in pain too. When he finished about an hour later her nurse was so proud of her for being such a big girl that she went and got the "prize box". Hannah could pick anything out of that box she wanted. Hannah was still crying and red in the face and asking for a pain pill at this time. Once she looked into the box though it was all over! She was SO excited!! She said she had just won the farting contest for sure .... I'm baffled not knowing what she's talking about ... till she pulls out a whoopee cushion!! Hannah and I were laughing so hard that Dr. Kelly came in to see what was so funny ... before he left Hannah's room we thought we were going to have to get him a stretcher ... his face was blood red from laughing so hard. He kept saying here's this sweet little fragile girl, wearing her dainty pretty little pink dress and pink shoes and pink hat to match just waiting to take her "new weapon" down to the nurse's station! She was sure she had the content wrapped up now!!

I had my camera and here come all the staff (Katie and Jason were looking real smug too). No one knew about the whoopee cushion except Hannah, Dr. Kelly and myself. She kept the cushion hidden under her dress. So the judge's are picked and the score keeper is ready and Hannah gets to go first. It was the best 3 out of 5 tries. The score's were 1 to 3 with 3 being the best. They were running head to head on the size of their fart noises until the last round ... when Hannah pulls out the whoopee cushion and plunks her butt down on it !!! She got a score of 3 from the first judge and a score of 6 from the other judge! So of course Hannah wins big time!!!! We were all laughing so hard ... there wasn't a dry eye to be found. We had such a huge crowd and some of the other kids wanted to get in on it too. Hannah earned the new nick name of "Stinker".

Her nurses and doctors can't wait to see what happens next Tuesday when she's admitted for the big dose of chemo ... the first time a Brittney Spears dance party, then a farting party .... what's next?? You can sure tell Hannah is feeling more settled. We both love so many of her nurses ... and of course she has such fantastic doctors too. The recreational therapist is her very good friend. I wouldn't say she trusts the staff completely yet, but I would say she does David ... she feels very secure with him.

So let's keep praying these antibiotic's continue to keep the infection under control and that we can come up with silly things for her to do while at the hospital.

Love, Cindi
06/30/2003
 Hannah has been in such a great mood, feeling wonderful, eating good, and seems more like her old self this past week. I was supposed to take her in for her booster of chemo tomorrow but had a prior appointment with Lisa that was scheduled months ago that could not be rescheduled without serious problems ... so I will take her on Wednesday instead. Depending on her counts, which should be good with her feeling so well, we are expecting her to be in and out of the Costas Center within a matter of hours. Next week she will be admitted for her big round of Chemo (VAC).

I think all the stress is starting to catch up with me finally. Last week Terry was really having a hard time and this week it seems to be my turn. There is so much "stuff" to process with being a "mommy nurse" plus trying to research everything I can find out about this cancer. Just trying to keep my house running (the way I like it to) seems like almost too much. My head pounds constantly and I can barely stand to even think of taking on anymore stress right now ... even the normal everyday things like paying bills, grocery shopping, laundry, etc.

On top of all this the contractor that was working for us in Litchfield on one of our rehab properties (that we were so happy with) just packed up his things one day and never even bothered to call and tell us. Terry went up there one day and all his tools and things were gone. When we called him he told us he got a better offer elsewhere.

This was the LAST thing we needed in our lives right now. Lot's of stress with what to do with the house now ... more so for Terry than me. He will just have to go up there and shut the house down until there is time to interview and start over with someone new.

Plus, I think my body is in need of estrogen pellets but trying to find the time to drive to the doctor is another ordeal (which is probably the real problem). I'll stop complaining now, I just wanted everyone to know if I haven't been answering your precious e-mails, or returning calls, or calling to tell each of you thank you for something very kind you've done for us this is why.

Just thought maybe when saying your prayers for Hannah tonight you could mention one for the rest of us too?

Thanks