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05/06/2004 |
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| Took Hannah to the Costas Center for a check up today and as expected her counts were low. Not low enough for a transfusion of red blood or platelets though! That's progress. Her little arms and legs are covered with black and blue bruises and she's pale, but she's smiling and enjoying life. We only have 3 more shots to take and she'll be finished with this 10 day round ... until the next Chemo trip.
Took her this afternoon to be fitted for the fashion show she's in this Saturday. It's at Old Warson Country Club. This is a huge fund raiser for Friends of Kids with Cancer (who do many fantastic things with our kids) and it is sponsored by St. Nicholas Philoptochos Society. The Fashion Show starts at 1:00 pm ... the tickets are very expensive and the only reason we're going is because they bought us two tickets.
Except for today, she's been able to go to school all week, and loving every minute of it too! She's really excited about tomorrow ... she gets to have a special pizza lunch in the Community Room for having reached over 50 points in Accelerated Reading. She is so excited about this ... takes so little to make her happy.
This evening before I put her to bed her temperature started bouncing around 100.2 and 101.0. I gave her some Tylenol and put her to bed, but it will be a long night because I'll be up there checking on her every hour.
I'm going to try and figure out how to send her birthday pictures over e-mail to you ... but I need to figure out how to resave them in a JPG program through Adobe Acrobat. It may take awhile though.
Take care ... all our love, Cindi and Hannah
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05/07/2004 - Birthday Pictures |
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| These are of Hannah's 7th Birthday. Isn't she a doll!
  
This one is my favorite! 
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05/10/2004 |
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| Hannah's still spiking fevers off and on ... easily controlled with Tylenol though. We're going to The Costas Center tomorrow morning and I'll have to get to the bottom of it. It's so odd how it just pops up every now and then and just goes away!
This evening before going to bed she started coughing and coughing and coughing. I put her back on her inhaler and Zrytek. She was up most of the night last night throwing up and complaining of tummy pain. I think it must be a virus of some kind.
We all had such a wonderful Mother's Day. I always request we spend the day at the Missouri Botanical Gardens, then a nice lunch out, then to the cemetery's to put flowers on the mother's, grandmother's and great grandmother's graves.
I wanted to share with you something Hannah and I did today. I'm sure you all remember me telling you the story about little Markie who passed away last December after his year long battle with Neuroblastoma. He was just two years old and the most precious little guy you'd ever meet. With Sunday being Mother's Day and today being Markie's birthday my heart was very heavy for Deb and David and their family. I have Markie's picture on the refrigerator and reminded Hannah that today was his 3rd birthday. At first she was sad and looked down, but just for a minute though, then she looked back up at me and said we should send Markie a homemade birthday card and tape it to a orange balloon and send it up to heaven (just as his family did at the grave side service).
After Sissy and Papa took her to get just the right orange balloon she came home and wrote on a piece of white paper, "Dear Jesus, please give this message and balloon to Markie for me. Love, Hannah Keeton". On the inside of her card she wrote, "Happy
Birthday Markie, we love and miss you"! I wrote a little note myself thanking God for keeping little Markie in his loving arms ... then Hannah taped it to the balloon (real good so it wouldn't come off) and together we went outside with Papa and said a little prayer ... then Hannah released the balloon.
I was surprised at how happy she was! She was even "excited" about. She must have said 20 times how nice it was that we did "a good deed today". When she asked me who I was calling tonight I told her Deb, Markie's mom, just to say hi and let her know we were thinking about her. Hannah insisted on talking to Deb too, she just had to tell her what we did today for Markie's birthday.
Before I put her to bed I asked her why she was so unusually "happy" about sending Markie the note and balloon and she told me, "because even when you die and go to heaven you still get to have birthday's"! She told me she had wondered what it was like once you were in heaven with Jesus. She said she knew it was really "cool" to get to go there, but didn't know what it would be like there once you arrived.
We talked a little bit about death and how it affected the loved ones on earth remaining here. It was one of those moments when you realize that your child has just comprehended the true meaning of something. I realized that she has no fear whatsoever of death ... that it's kind of "cool" and "exciting". Of course she has no desire to be with Jesus, she intends to stay right here with her mommy.
But should the day come when Hannah would loose her battle with cancer, I will never forget the happiness I seen with her today when she realized what it would be like for those of us down here.
Just to think this special little girl is only 7 years old. Thank you God for the most precious gift in the whole world!
Love, Cindi
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05/13/2004 |
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| Hannah has been very sick since Tuesday morning. Dr. Kelly almost kept her but because it was borderline he let her go with instructions for me. She has continuously ran a fever since last Saturday but it never got over the danger line. Tuesday after we came home from the Costas Center things changed. She was climbing up to 101 and 102 but with Tylenol it came down ... then after a hour or so it went back up! She was up all night Tuesday coughing and coughing until the point of throwing up. Then the drainage changed colors and I knew it was a Sinus Infection. I called and Dr. O'Connor called her in an antibiotic and told me to stay with all her meds and inhaler. Her fever continued off and on all day but her cough was getting better. She was so weak yesterday and hasn't ate hardly anything since Monday. She doesn't want to drink either but she knows she will have to go in the hospital if she doesn't.
I was up most of the night with her again last night and around 3:30 am she finally fell asleep. She slept good until 8:30 am and woke smiling and feeling better. She's still running a low grade fever and coughing a little bit ... but now she's blowing her nose constantly which is a good sign that it's breaking up and she's getting rid of it.
I'm in touch with Dr. Kelly several times a day. We're watching her very close, she's begging me not to take her to the hospital and we're both trying not to ... it'll just depend on how she does today though.
Will keep you posted.
Love, Cindi and Hannah
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05/16/2004 - To Doc Kelly |
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| Hannah is still coughing and blowing her nose constantly. She isn't coughing nearly as bad as she was last week when I brought her in. Her temperature is either in the 98 or 99 range. She is very pale though. She's tired and doesn't have alot of energy.
More importantly, Hannah continues to cry in pain that when she goes Pee it hurts her back (she thinks it's where the kidney is). I know I mentioned this to you last time we were in. However, Friday, Saturday and tonight she has been screaming with pain in the middle of the night, from the left side this time. She has been to bed twice tonight and has gotten up screaming that awful scream that only a child in severe pain can do. She was withering and screaming for me to make it better and I couldn't! I gave her a Methadone and it took an hour before it made any difference. She was uncontrollable until that started working. I almost paged the Oncologist on duty as I was getting very scared.
Her dad sat with her awhile and eventually she settled down. He just put her back to bed and now 10 minutes later she is screaming again! She points to her side and back area when I ask her to show me where the pain is.
This is exactly what she did before she was finally diagnosed last May. The severe and uncontrollable pain after she got into bed ... and more pain during the day. Unfortunately she learned how to live with it and suffered for months. I refuse to allow this to go on anymore. There is definitely something wrong with her. I know you took a urine sample last week but I haven't gotten the results back. What kind of tests are there that can help us figure out what is causing this severe pain?
Because she has congestion and some "wheezing" in her chest I'd like for you to listen to her tomorrow morning. I know Monday is not your clinic day but I'm sure one of the other doctors could check her out.
As I'm writing this Terry is trying to settle her back down. I may or may not be in the ER tonight.
Thanks!
Cindi Keeton
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05/17/2004 |
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| We arrived at the Costas Center by 8:30 am and Hannah was very sick. Her tummy and neck hurt so much that she was crying. She was taken straight to the "Mickey Mouse" bed where she curled up in a ball and demanded the lights be turned off and the room quiet. Bossy isn't she?
After paging Dr. Kelly and finding out he couldn't see Hannah it was decided that Dr. Chu would take a look at her. Dr. Chu was very concerned at the intensity of pain she had in both her kidney areas. He also noticed how distended her stomach was. We talked about how sick she has been with upper respiratory infections (twice in 4 weeks). We then talked about her last CT scan results.
He told me she would not be getting chemo until we found out what was causing the kidney and side pain. He said that he would talk to GU and see if they wanted to order tests and afterwords we could go home until all the results were in. I told him after last night there was no way I was taking her home. I knew that I could not control her pain at home on my own. He agreed and she was admitted.
It was decided that she would have an Ultrasound Scan and study done of both her kidneys. She only had to wait an hour to get in and get that done (now that's record time). Later in the day Dr. Kelly came to see Hannah and ordered a chest x-ray. His theory is she is having the back and side pain from all the coughing she has been doing. Because I've been sick both times she has I know exactly what he means.
As Hannah's mother I know this isn't what is going on. I explained that this was identical to how she acted prior to her diagnosis. It's not a coincidence that after going to bed at night she would wake within 2 hours with excruciating pain. He agreed that was odd. I also explained that every time Hannah urinates she literally has tears coming down her face. She also makes grunting sounds and I know this is not due to coughing. Again, Dr. Kelly agreed this was odd. He left (after checking her test results in x-ray) with the intentions of giving Hannah her chemo treatment in the morning. I am not agreeing with that decision and feel strongly that we need to find out exactly what is causing this pain so the kidney's are not damaged further with toxins.
She is snow white and it's because she needed a blood transfusion. As I write this update it is going in her. She was so cute this evening when she heard Dr. Kelly ask me if I wanted to give her morphine tonight so she could rest and sleep through the night. I thought the Methadone was a better choice ... Hannah was listening and turned around to tell us that, "Ewww I want the Morphine, it really works good"! It's so amazing to listen to her tell us the difference between the two drugs! Yikes!
She has not ate or drank once today ... she refuses. After getting the Morphine tonight she went right to sleep and has not woke up once. It's a restful sleep too ... she hasn't moaned once.
We found out the chest x-ray was clear. We weren't able to figure out the results of the ultrasound ... have to wait until the Radiologist reads it tomorrow. I will let you all know then.
Love, Cindi and Hannah
P. S. The update I sent last night (an e-mail I sent to Dr. Kelly) I just copied "Hannah's Update List" so I wouldn't have to write you guys another one.
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05/18/2004 |
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| What a day ... what a day ... what a day! Hannah was only getting morphine every 4 hours and when it wore off this whole hospital knew about it! This morning I asked if she could have the PC Pump or have morphine more often. Around 3:00 this afternoon we finally got an order. Instead of the pump Dr. O'Connor ordered her dose increased from 1 mg to 2.5 mgs. This has helped her pain alot.
Finally Dr. O'Connor was able to get some results from her ultrasound scan. Both kidneys are swollen, inflamed and not draining properly. The left ureter is tapering off at the bottom not allowing the kidney to completely empty. The right is doing the same just not as bad yet. It's amazing too because she's never had problems with the left kidney at all. The ultrasound also showed her belly was filling up with fluid. What he wasn't able to tell me was why and where we should go from here. He told me he would wait until Dr. Kelly came back at the end of the day and discuss things with him as he was more familiar with Hannah's case.
Dr. O'Connor thought surgery should come in and look at Hannah and have a consolation with oncology. The whole team was here today and looked at her body and of course they remembered the last two major surgeries well. They told me they would need to study the CT Scans from a month ago and would be ordering a new one to be done with contrast (probably tomorrow). The upsetting part was they could potentially explain the kidney issues but had no explanation for the severe tummy pain.
Finally GU came in to see her late this evening!! This resident had taken the time to thoroughly research her case and was well versed in what was going on. He was not part of the November surgeries and I was impressed he knew so much. His theory, and only a theory at this point is that for whatever reason (possibly radiation) the ureters became damaged and it's just taken this long for the end result to show up. He explained there would be a very good chance that she would have to have two stints replaced in her ureters. YULK! Hannah done so poorly while they were in for three months after surgery. She was always in pain and always getting infections. She lived on antibodies during those three months and that medicine made her sick to the stomach all the time. He didn't know if this would be temporary or permanent at this point. The worst part was he had no idea what was causing all the severe tummy pain either. He was going to suggest to Dr. Cummings that the IVP test that was just done after the last CT Scan showed she had fluid pockets be repeated. He agreed that she needed another CT Scan done with contrast too. They're pretty sure this will show something.
No one knew when this would take place though. Hopefully tomorrow GU, Surgery and Oncology can have a consult and figure out what to do.
This is the third day Hannah has not ate or drank anything. The morphine just knocks her out so she sleeps alot. When she isn't sleeping and wakes up for awhile she wants me with her. She'll tell me to "come and sit with me" or "lay down next to me" or "hold me" and it just rocks my world. She's so sick yet so loving and gentle all at the same time. She's just amazing.
I'll keep you posted.
Love, Cindi and Hannah
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05/19/2004 - Devastating News |
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| This is the hardest e-mail I have ever had to send.
This morning we took Hannah down for a CT Scan and pelvis x-ray. The last scan she had was April 20th. It took them awhile to compare the two.
I had a awful feeling in the pit of my stomach and asked Terry not to go to work. Around 1:30 Dr. Kelly came and asked us to go the conference room to go over the results. My shoes felt like they had concrete in them and my stomach hurt so bad I thought I was going to vomit.
He just came right out and gave us the worst news we would ever hear. The test results showed that Hannah's tumor had doubled in size and her whole abdomen is now full of many new tumors. It is in one lymph gland for sure that is right next to her left kidney. That left kidney is obstructed and not allowing the urine to empty - which is what is causing her severe back pain when she pees. The tumor has once again pushed everything out of proportion inside her little body. Her bladder is smashed up against her stomach which is what is causing her awful stomach pain.
Dr. Kelly told us this is fatal. I asked him how long and he told me a couple of months at best. He said he has never had a patient relapse during treatment. The many chemo drugs Hannah received were the "big guns" and they certainly didn't make any difference. This cancer is very aggressive.
He gave us a few options at this point. One was to do nothing and keep her comfortable. Another was to see if we could get her in a study at St. Judes's (and we also asked him to check into Sloan Kettler in New York). Dr. Kelly did check with New York and was told that in their Rhabdo relapsed patients they use two drugs which are Vinorelbine (a drug from the Vincristine family - which she has been receiving) and Irinitecan. These drugs are not given to kids unless they relapse. Unfortunately there was no clinical study going on at this hospital at this time.
He called St. Jude's next and left messages for the right people to return his call. On their website he was able to check and see what studies they have going on and he said there was one Phase One study. He made it very clear that these types of studies are to educate the physicians on what these experimental drugs do to tumors - not necessarily to cure Hannah.
If we decide to go further with these other drugs (and Terry has already made up his mind to) then this is the last thing they will do for her. There will not be any other drugs to try. She can't ever have anymore radiation either. He said, "we will have one shot at it" and that we would have to be extremely aggressive with it.
The medical text books tell us she had a 75 - 85 percent chance of beating this when we started this exactly a year ago. Now the text books tell us it's 10 - 20 percent with this aggressive relapse. However, Dr. Kelly would have never told us up front that it was fatal if he thought these other drugs might work.
The important thing is that the tumor is growing fast, even as I write this e-mail. Everyday I check and rub her body and haven't been able to feel anything. Tonight I did and it feels hard as a rock all along the bottom of her tummy. Dr. Kelly is not only giving her morphine but has now added Methadone.
Lisa came up as we were being told and now knows. She is absolutely devastated as Terry and I are. We are very worried about her. She canceled her summer school class so she can be with Hannah every minute. Terry just left the hospital and he was going to stop by and see if Brian was still up ...
The nursing director Peggy and a wonderful friend and nurse who has been with us very closely since day one (and rounds with the doctors daily) ... Pat Codden spent the day and evening with Terry and I trying to get us to have hope. They think we should take the position that we are starting all over again from square one with new drugs. I don't know if I have the strength for that. Dr. Kelly asked us to begin the footprints program (which is like hospice for adults). I don't have the energy to do that either.
All I know is I don't want my baby to suffer anymore ... yet I can't let her go either. I wonder if the rest of the world knows how incredibly unique and special this breathtaking little girl is. How does a family who loves this gift of life start to plan her funeral while she's still alive?
I have never lied or left out anything from Hannah ... ever. We've always been completely honest and open about everything. The nurses told me that I shouldn't do this with Hannah this time. They don't want me to tell her. I would never offer that information to her but if she were to ask me if she was "going to die" like she did the first time she was diagnosed I don't know if I could lie to her!
Tomorrow morning they want to put the neufrostamy tubes back into her left kidney. She had this done last time too. It's the only way to release the pressure from her kidney. We have agreed to do this and I suspect sometime in the afternoon they will take her down to surgery.
Work ... how could Terry possibly go to work and take one moment of time away with Hannah when the countdown is on. Our income has been cut tremendously when I had to quit my job, and by Terry taking off so much with Hannah already. There have been a couple of you that have mentioned benefits and fund raisers and if you're still planning on doing that this would be the time.
Yesterday there was a message left on our answering machine that the people who were supposed to start on Hannah's princess bedroom had decided they couldn't do it now!!!!!!!
All this time we have been waiting on them and then they back out! How unfair!! There must be a way to get this room done for Hannah ... for those of you who volunteered before I am asking that you let me know if your still interested.
To ask you to pray for Hannah seems kind of redundant at this point. Obviously our prayers are not going to be answered. Maybe instead of asking for her health to be restored you could ask that the pain be manageable and that my family will be able to see her through this.
To tell you we're beside ourselves is putting it mildly. As much as I hate to ask I feel I should. We're asking for a couple of days to ourselves with Hannah to try and come to terms with this ... somehow someway. We're not going to be able to talk on the phone in front of Hannah either ... not and be truthful with you. I guess we'll have to rely on e-mail. Peggy and Pat have offered to speak with anyone and make phone calls and do anything whatsoever that we would need them to do ... all I have to do is let them know. If there is anyone who would like their phone numbers please let me know.
I will keep you posted. I know how much love there is on this "Hannah" prayer list. We thank you and we know that your with us.
Love Cindi
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05/20/2004 |
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| This morning and afternoon Hannah's pain grew worse despite the Morphine being increased from two hours to one hour. Her tummy was so huge and swollen. She'd scream in unbearable pain one minute from her left kidney then the next her tummy. They changed her surgery time so many times ... she finally got in about 2:30. Once again I insisted that SLU do this procedure so the transport team and I took her over there and they done a excellent job.
The left kidney now has the neufrostamy tube in it and it is draining quite well. I am amazed at the amount of swelling that has gone down in her stomach ... must have been the huge amount of fluids. There is a urine bag that hangs down that collects her urine from that kidney ... and it's been bulging full three times already! No wonder she hurt so bad. That left kidney was more than double the size of the right one and larger yet than the CT scan from 2 days ago showed. The surgeon said everything went very well and she shouldn't have any problems with the kidney now. The good news is that she doesn't have any stomach pain anymore. The pain of putting the tube in and stitching it to her skin is causing her alot of pain. I'm hoping by tomorrow there will be a noticeable difference in that too.
Much to everyone's dismay we had to put her on the PCP morphine pump today. She now pushes it as she needs it and she doesn't have to wait.
Terry and I are still struggling with what the right decision is for Hannah. It's too hard. We don't know how to go about knowing what to do either. This is our decision to make but only because we have been forced to. The decision that is made has to be one that is best for Hannah.
While at SLU today they had her last CT Scans up on the board and they studying them before going into the surgery. Terry and I stepped over and looked at them and I was shocked at what I saw. Hannah's poor body is just a mess. The tumor is very large. It is more than doubled in size from what Dr. Kelly told us. It's pushing so hard on the bladder that instead of seeing a big round gray circle in the middle of the abdomen I could only see a tiny sliver of what was supposed to be her bladder smashed up against the inside lining of her stomach. Her liver is very large too. I was not made aware of that. It is enlarged but not diseased ... thank God. Her lungs were also cancer free. I could see a kidney stone too ... poor baby. I wanted to throw up when I seen all the new tumors. There are so many.
Surprisingly Terry and I are holding up well under the circumstances. Much better than last night. I'm so worried about Lisa and Grandpa - they are an absolute wreck.
We are thinking of driving to St. Jude's tomorrow and checking out their facilities and speaking with one of their relapse Rhabdo physicians. If they can't accommodate us then we are at least going to speak with them on the phone.
I'll keep you posted. Having this time with Hannah by ourselves has been so appreciated. My family is exhausted and not having to talk about it has been what we needed. I know we could use a few more days as well. We must make our decisions and accept them and it takes total and complete concentration on our part. I know you all will understand that.
I promise that I will get back with those of you who e-mailed about the princess bedroom. I am falling asleep as I write this. I also have an idea about a fund raiser for you that are looking for something with the gold ribbon pins. I'll get with you more tomorrow.
Thank you all very much.
Love, Cindi and Hannah
P. S. Hannah is laying here next to me and she is so cute ... she sucking and making the noise like she has a baby bottle in her mouth! I guess that's something she has carried over still from being a baby.
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05/21/2004 |
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| Hannah had a bad day today. She was in alot of pain from the tube in her kidney. Her back is really sore. She hadn't complained once about her tummy pain until around 1:00 am. She has been running very high fevers all day. The temp a dots they use here at Glennon only go up to 105. She was over 105 many times today. They've been doing blood cultures since Tuesday and they all come back negative! They are pretty sure that it's the tumors causing the fever. They can do that. Every time she would peak that high I would get cold wet wash cloths and start wetting her down. I asked the nurse if she could have a cooling blanket today and I'm not sure if that's helping or not. We started her on another new antibiotic today. It's only a one time dose because these drugs are hard on the kidneys. This is the sixth day that she's not eaten anything but she has begun to drink a little bit. She wants Root Beer of all things!
She's been so MEAN again today. We nicknamed her Megan when she was first diagnosed because she would scream at the very top of her lungs and her face would be blood red and the veins would pop out of her neck when someone would do something she didn't like ... which was everything. Then the next moment she would say something sweet. Megan is the girl who played the character in the Exorcist. We get a big laugh out of it. She showed NO ONE any mercy today!! Whew!!
I got her a walker today so when she gets out of bed she can walk by herself. She has had these before and they work miracles for her ... really gives her the security she needs.
She was only up twice today and she cried the whole time because she was in pain. I've been getting really worried about her as the night goes by because she's not waking fully and now her tummy is very distended. I couldn't believe it when I saw it. I told the nurse to call the staff doctor right away. She came up and agreed it looked bad. She called and woke Dr. Kelly up and he is aware of what's going on with her tummy. He's pretty sure it's the tumors collecting fluid in the abdomen. We will reassess in the morning he said. For the fevers we will just continue cooling her down with cold cloths and the cooling blankets. And pray.
She looks so bad tonight. Her face is so pale and she has those very dark circles under her eyes. She's so weak that it scares me. She seems to be getting worse very, very fast.
We are all doing the best we can. I've been trying to find information on where to send Hannah. We asked Dr. Kelly today to transfer her to St. Jude's but they wouldn't take her. I am very UPSET about it. The doctor at St. Jude's won't accept her because they don't have a study she's eligible to get into ... which I understand ... but I wanted her treated there by the team of Rhabdomyosarcoma oncologists who do nothing other than specialize in Rhabdomyosarcoma Stage 4 relapsed tumors. They said they would take her then said they wouldn't because they didn't have a bed! I am very upset. We have to find a way to make them change their mind! I've placed a call to them but they probably won't return it.
The worst part right now is not having the information we need to contact other cancer center treatments for pediatrics. I don't have a clue what's out there so I don't know who to call!! We just found out today around 4:00 pm that St. Jude's wouldn't take her and now it's the weekend and no one works on the weekends around there! Hannah needs treated with chemo NOW. But if we start her here we can't move her anywhere because they won't take her. But now I'm hearing they are full! Just great .. guess I'll have to find time to research the computer and try and find out on my own just what it is I need to do for her. I resent this and feel that there should be someone somewhere that takes care of this kind of thing. I hate this!
I promise to e-mail you the information on the fund raiser idea I have with the gold ribbon pins tomorrow and to let you know how many wonderful have volunteered to help with the princess room.
I'm exhausted.
I'll keep you posted.
Love, Cindi
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05/21/2004 |
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| Many of you have sent Hannah the most wonderful messages to her email address. It's great that you do this... but just remember that Hannah doesn't know her future outlook and we aren't going to tell her just yet. Some of you mentioned dying to her in your messages and I don't want you to do that yet.
Thank you.
Love, Cindi
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05/22/2004 |
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| Throughout Friday night into Saturday morning Hannah continued to run extremely high fevers. I stayed up with her most of the night and worked at cooling off her body temperature with cool wash cloths. It helped a little I think.
Her stomach was very distended and on top of that I couldn't get her to wake up. She was struggling to breath and you could hear every labored breath she took. I became very scared and asked the house doctor to turn her morphine down. It was up to 2.5 mg and she turned it down to 2 mg. She was so out of it that she wasn't able to push the morphine button herself. The house doctor told me her stats were good and that Hannah wasn't being aroused because of the 106.5 fever (caused from the tumor) and morphine combination and it was ok for me to go to sleep. Fat chance! I was laying with her and she was talking in her sleep saying things that were so random and not making any sense. I took this opportunity to talk right into her ear and tell her to please wake up, not to look at any bright lights, to look away, Mommy wasn't ready for her to leave yet, to please wake up, over and over again. I knew she was slipping away from me, just as I knew her tumor was back and how bad things were for her. Her little heart was beating so fast ... then her monitor started making these awful alarm noises when you know their oxygen level is dropping ... and I made another desperate attempt to wake her. Her little arms and body were limp and no matter what I did she wouldn't open her eyes! I lifted her up and sat her on my lap with a cold wash cloth on her face and just cried and cried. What seemed like an eternity was only about 10 more minutes and around 5:00 am she blinked her eyes and twitched her hands and arms. I was whispering in her ear how much I loved her and realized her forehead was not on fire anymore. The worst was over. When she did open her eyes she stared at me in silence as she always does when she's thinking, and we spoke no words. I smiled at her and she smiled at me. I knew we had her back and I could grab a couple of hours of sleep.
She slept until 8:30 this morning when I woke up. She had no memory of anything that happened during the night. I felt my heart in my throat when she told me she was hungry ... and that she loved me. I thanked God over and over for not taking her home and allowing me to keep her ... even if it's only for a short time. I wasn't ready to give her up last night and I'm praying for strength to be able to when it's time. God was kind to me last night. In my heart I know God's kindness is only temporary and that there will be a time when he will take her home. I don't think Hannah will leave this earth as long as I'm with her, she'll wait till I'm not in the room. I know she fought hard last night to stay here with me and I also know I have to take this time to learn how to love her enough to let her go when the angels come for her again. Could someone just tell me how to do that.
Hannah has had a much better day today. She is still Megan though! Mean and grouchy ... Wow. Since she had done so well with the morphine being turned down to 2 mgs I asked and it was turned down once again to 1.5 mgs. She's tolerated it quite well. Terry has gone and got her anything she thought she might want to eat ... and she wanted it until it got here. After a week without eating and drinking we had to put her on TPN today.
Terry and Lisa got her to walk with her walker over to SLU today! She likes their gift shop and their food is so much better that Glennon's. She walked ALL THE WAY by herself and the walker. I couldn't believe it .. that's a long walk. They brought the wheel chair just in case and I'm glad they did because she needed for the walk back. She was so cute when she came back ... imagine this ... this little girl in this big wheelchair with a snow white face, covered up in all white sheets, with these black and red diamond sun glasses on! Then I knew my Hannah was back. It was hysterical!!
Brian and Sheila (his new girlfriend) and Grandpa Fred and Ella (his girlfriend) came up to visit today and she held out pretty good. I was in her room trying to find information on the Internet about what to do and where to go from here. It's exhausting work ... and I still don't have a clue what to do.
I got so sick and tired of these little four walls and the computer that I decided Hannah was going to go outside on the patio with me, Terry and Lisa. She said no she didn't want to but I said too bad your going anyway. Believe it or not she just fused a little and went. It was such a beautiful evening. The breeze was perfect. She enjoyed it out there those 30 minutes but she wasn't about to admit it for one minute. When we got back up to her room Krazy Katie was here! Hannah hasn't seen her for months and months. Katie switched shifts and is only here on Friday and Saturday midnights. Being with Katie made a HUGE difference in her. I just couldn't believe it. I spent two hours with her drawing pictures and took a chewing from her the whole time. Katie walks in the room and she's as sweet as butter and had a blast playing hangman and some silly hand game with her. Katie's boyfriend Matt likes to bring Hannah Hardee's chicken and mashed potatoes and gravy. Tonight Katie told Hannah Matt would bring her some tomorrow and she was acting silly and smiling and being her ol' jolly self again. I heard her tummy growl and asked her if she would let me get her something to eat and she ate two bites of chicken from Arby's. Earlier today she would only eat watermelon for her dad. It' a start though.
Her left kidney tube was draining a beautiful clear yellow until this evening. Now we're switching back to blood. Dr. Kelly called in to check on her this evening and he wasn't surprised and ordered her fluids be cut back so her kidney's could "catch up" with the amount of fluids they're pumping in her. He also ordered for her to receive IV Ibuprofen for fever and that seems to be helping. She went to bed tonight without anyone helping her get in bed! She's been in so much pain from the tumor and surgery that we've had to help her do everything. She was so proud of herself and explained to Katie that she could even hold on to the handrail and lift herself out of bed by herself. That's progress!
I'm exhausted and going to bed. Will keep you all update.
Love, Cindi
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05/23/2004 |
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| Hannah has had a up and down day today. She was burning up with fever this morning when I woke her around 8:00 am. After making her hopping mad at me with the cold wash cloths and cold water to drink she got up and got motivated. She let me give her a sponge bath and lotion her down. She smelled so pretty and offered to brush her teeth instead of me making her. She got up and took a walk down the hallway and met a new friend Ella. She's six years old and just starting her treatment. She has a solid tumor on her kidney.
After Dr. Kelly checked her out she decided to stay outside her room at a little table and chairs and draw some pretty pictures. She had visitors from her hospital Grandparents Gene and Pat and her Grandpa Fred and Ella. Of course Sissy and Terry are permanent visitors. She really enjoyed her pediatrician Dr. Didriksen coming over to visit this afternoon too. She brought her little girl Molly with her. Molly is Hannah's age and they've been wanting to meet one another since last summer.
I got Hannah to eat a bit more than yesterday. Krazy Katie and Matt brought her KFC chicken and mashed potatoes and gravy. She drank alot more today too. She wouldn't voluntarily ask for anything but if you bring it to her and really push it she will. She's such a good girl.
We got a phone call reminding us that Monday was the last full day of school. Hannah dropped her little head and didn't say a word ... I knew she wanted to be there to tell Miss Burhmeister "Happy Retirement"! I asked Dr. Kelly if she could go for a couple of hours and he agreed and said we could hep lock her and send along Morphine pills that disintegrate in her mouth. Sissy is coming up to get her because Mommy and Daddy are going to be very busy trying to get Hannah transferred to another hospital.
She's so very, very swollen tonight. Despite the Lacix's she was given she looks bad. She looks like she's swallowed a watermelon and her back and buttocks are very swollen. Her right leg is becoming very swollen too. She complains of pain every now and then but just pushes her PCA button and she feels better pretty quick. Her fevers are still raging though. I'll never get used to it going above 105 ... it scares me to death.
I'll keep you all posted.
Love, Cindi and Hannah
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05/25/2004 |
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| I'm going to have to make this short ... I am exhausted tonight and can barely keep my eyes open. I know I have many emails to return and I promise I will soon.
Hannah continues to have "tumor fevers" off and on and as high as 105. We had to cut her IV ibuprofen back to twice a day because it's hard on her kidneys. She woke up this morning sick to the stomach. She ended up vomiting (which she never does) and I know this is one sign of a bowel obstruction.
She got up this morning after being sick but was still too weak to go to school. She was so disappointed. I told her if she was up to it tomorrow I would take her if only for an hour or so. She started getting visitors in the morning so that helped to motivate her to sit at the little table outside her room and draw pictures.
Dr. Kelly took her off her PCA morphine pump today ... and put her on Methadone. It became apparent this evening that this was not a good idea! He did write for her to have the Morphine drops on her tongue and that did help ... oh how she cried and screamed because she hated the taste though!
I spent the entire day and evening working on pediatric cancer research. It's massive and takes an incredible amount of time. Our friend Diana came up after she got off work and started helping me ... thank goodness for her! She's much faster and better at using the Internet than I am. A few of the doctors did return my call, but most of them haven't. Of all the searching I did I could only come up with three Rhabdomyosarcoma specialists that are experts in the field of this disease. At this time we have narrowed it down to 13 different choices!
These are our selections: National Cancer Institute in Maryland
Children's Hospital in Philadelphia
M.D. Anderson in Houston
Mayo Clinic
Children's in St. Louis
St. John's in St. Louis
Sloan Kettering in New York
Children's in Minnesota
Houston, TX
Children's in Kansas City
Riley in Indianapolis Indiana
Children's in Boston
John Hopkins
Children's in Boston, Children's in Philadelphia and Children's in Minnesota have a Rhabdomyosarcoma Specialist on board. In my opinion this is what Hannah needs. After talking with hundreds of other professionals they are not sure this is what she needs, some say yes, some say no, some say to get her in a Phase 1 Study, some tell us to get her in a hospital that uses research drugs ... I could go on and on.
Hannah needs treatment immediately though. Just when you think she can't get any larger all you have to do is look at her. I can't hardly take it anymore. We're on our own with this and not getting any help from anyone else here at Glennon.
We had a discussion today with Peggy and Dr. Kelly about some issues that have just come to light and Terry and I find ourselves slipping deeper and deeper into doubt and fear about this past year.
EVERYTHING takes so darn long to get done in the medical field that we may not have the time to get Hannah transferred where she needs to be! All I can do is hope and pray and ask the rest of you to join me in asking God for his guidance to do what little can do done to spare her life for just a little longer.
Love, Cindi and Hannah
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05/26/2004 |
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| Hannah was moved around noon time today from Glennon to St. Louis Children's Hospital on Kingshighway. Terry requested they move her by ambulance. She's up on the 9th floor on the West side. She's in alot of pain today and they are scrambling around trying to get her all set up so they can help her.
I will be in touch later with more of an update.
Love, Cindi
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05/26/2004 |
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| Hannah is about the same as yesterday. Her night was a repeat of the the past few nights too.
I don't have a computer here at Children's and for now will have to limit how often I will be able to email everyone.
Terry and Lisa met Dr. Laura Jones today and they really liked her.
For our 25th anniversary today Terry stayed the night with Hannah and I came home and got some sleep, change of clothes and done some "house stuff".
More tomorrow.
Feel free to call or visit if you'd like.
Love, Cindi
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05/28/2004 |
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| Hannah continued to be in tremendous pain Thursday and it only seemed to get worse today. She is now back on the PCA pump getting a continuous dose of 3 mg ... so far this has seemed to make a difference.
Because she continues to have a cough they decided to x-ray her chest today. It would have been much too painful for her to try and lie flat on the x-ray table downstairs so we requested they bring up a portable machine to her room. Because of the neuphrostamy tube coming out her back, even lying on the x-ray cartridge they put under her caused her to scream bloody murder! She has been on a antibiotic prescription that's used to treat pneumonia since arriving here at Children's.
Around midnight last night she was given a new drug called Irinitician (?). One of the side effects is diarrhea. She has had some but it hasn't been awful. They are giving her drugs to counter the diarrhea and it seems to be working.
I measured her stomach last night and it was 31.5 inches around her belly. She is so swollen that it breaks our heart just to look at her.
She's been able to force herself to get up and go to the playroom everyday, except for today. She continues to refuse to eat or drink anything.
She asked her daddy to bring up her pink and yellow "duckie blanket" that Pat from Cardinal Glennon got her when she was first diagnosed last year. I asked her why she wanted that blanket and she told me that it reminded her of "our first home".
She is so mean, mean, mean! She screams at the top of her lungs if you don't do want she wants you to do immediately, if you disturb her, if you touch her, and if you don't understand what she wants or is trying to say! Sometimes it gets really hard ... then when she sits up and asks me to hug her "for awhile" it all becomes easy again.
We're all hanging in there with out little angel. I'm getting tired and could use some sleep, but for now she either needs me or wants me through the night and I want to be there for her.
I will keep you all updated as things change.
Cindi and Hannah
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05/28/2004 |
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| Just wanted to let you all know that I am in the library of Children's right now. I do not have access to a computer like I did at Glennon. I hate that!
Please know you can always call me on my cell if you really need to get in touch with me. The number is XXX-XXX-XXXX and Terry's cell phone number is XXX-XXX-XXXX.
We are trying to make plans to have everyone interested in helping with the Princess Bedroom come to the house to meet this weekend. We are thinking of Sunday at 1:00 pm. I am hoping to check email tomorrow so we can get a heads up on everything.
Thanks again to each and everyone of you for offering!
Love, Cindi and Hannah
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05/29/2004 |
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| Hannah had a repeat night of the previous nights. She did get up one more time to go pee than she had been ... which I think is great. During the day she went pee two more times than she usually has also.
She has turned much meaner this morning though. She told me to get out of the bathroom and leave her alone! Until she called for me that is. No matter what I did it was wrong and she is one very angry child that I barely recognize. Hannah's "angel friend" came up to visit her yesterday and Hannah was the same way to her too. Today Grandpa Fred came up and she had nothing to say or do with him either. She spares her sissy no mercy either .... and refuses to talk to anyone on the phone either. It's strange though that she wants her dad now ... and wants me to go home and leave her alone!
We got bad news yesterday evening with the chest x-ray. Hannah does have pneumonia in her right lower lobe area. They changed her antibiotic's and we're hoping this works right away. This morning we asked for the barometer that you blow into ... they give it to you after surgery. She blew into it very strong and did it 10 times in a row with no problem. Nope, she can sure use those lungs of hers just fine.
They had to change her port needle today ... every seven days they tell us. Hannah absolutely freaked out. The nurse who went to put it in the first time didn't push it in hard enough and then tried to flush it. I thought Hannah was going to slug her. Then of course she had to take the needle out and start all over. Because Hannah was Megan by this time, her nurse decided to get her supervisor and Hannah spared her no mercy either. The whole time I was thinking of Marsha (her Costas Center) nurse. Marsha took the time and patients to get Hannah to sit still and allow Marsha to put the needle in with no adverse affects at all ... ever. Marsha put so much time and energy into easing Hannah's worries and allowing Hannah to think she was in total control. I wish you could have seen these nurses faces when Hannah screamed at the top of her lungs, "I'M GOING TO COUNT TO 10 FIRST! YOUR NOT GOING TO COUNT WITH ME EITHER. WHEN I'M DONE COUNTING TO TEN I WILL TELL YOU "GO" AND THEN YOU PUSH IT IN BUT NOT UNTIL THEN. AND NO ONE ELSE CAN COUNT WITH ME EITHER, I'LL DO IT ALL BY MYSELF"!! Then she had the audacity to ask them if they understood her! Oh my gosh! To tell you these nurses weren't impressed and certainly didn't appreciate my daughter's berating is putting it mildly. I think we need to start using Adavan more often or she's going to have a stroke on us ... I'm serious.
She has had diarrhea but all in all it's been mild. She still refuses to eat or drink anything. Terry and Lisa were able to get her out of bed today for about 30 minutes and they walked down to the gift shop to buy her a new book to read. After that she threw her royal fit and got some Adavan and went straight to sleep. She slept until Terry woke her up for her night medicine and to get her ready for bed. She's being nice to him so he is staying with her tonight and I am at home.
Will keep you posted.
Love, Cindi and Hannah
P.S. I received some tragic news this afternnon from a dear friend who's daughter has the same disease as Hannah ... her name is MacKenzie and she is only 4 years old. MacKenzie's dad (Pat) is also battling lung cancer at the same time with his daughter. A couple of days ago they received the same news we received about Hannah ... it's only a matter of time. He relapsed with massive progression also. This morning they went to the funeral home and made all the necessary arrangements. I just don't know how much God expects Shayna to endure. Please keep this family in your prayers. Thank You.
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05/31/2004 |
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| Dr. Laura came in today and said she'd like to send Hannah home tomorrow. I was shocked because Hannah is still on the Morphine drip with the PCA pump. I know Hannah does so much better at home with us and Papa ... but it makes me nervous with all the pain she continues to have. The swelling is still quite significant but she does seem to be going on the toilet more often ... excellent sign.
Tonight was her 5th night of Chemo. They will rest her now for 14 days ... then back on Chemo for another 5 days.
Dr. Laura told Hannah she must eat and drink ... if not, she goes home on TPN and fluids. Terry tried to get her to eat a little bit tonight but she just couldn't bring herself to do it. Bless her little heart, she really does try so hard to make everyone happy.
I asked her this morning if I could come up so Daddy could take a break and she told me once again "No". She said she missed me "lot's" but wanted to spend this time with Daddy. Once again I gave in and stayed home ... good thing too ... I've suffered with a migraine all day today.
Tonight she was watching one of her favorite shows, "Fear Factor" and the little bleep across the tv screen was warning about tornado storms in "Upper Northern Madison County". She looked over and asked her dad if this was where we lived! Terry told her it was and she told him she wanted him to go home right away and be with me. She told her Sissy that she could spend the night with her instead. What a doll! Had she or Terry called me and told me I would have insisted Terry stay or I would have come up there with them instead ...
Terry said she actually sat up and visited with Shelley, Paige and Erin tonight! I spent a big part of the day yesterday warning them how terribly mean she's been and leave it to Hannah to prove me wrong! That's ok though ... I'd rather she proved me wrong any day.
I will be going up there early in the morning just in case she does get to come home. It seems so odd though ... last year at this time with being this newly diagnosed she was in PICU ... now she's coming home ...
I know you'll all wish us the best and I also know all your love and prayers are with us.
I'll keep in touch.
All our love,
Cindi and Hannah
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