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10/01/2003 |
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| I'm sorry it's taken me so long to update you about Hannah. We've been extremely busy. Hannah did come home from the hospital last Friday without any IV fluids or IV antibiotics. Dr. Kelly really wanted Hannah to be able to ride in the bike a thon. She was pretty worn out Saturday but insisted on riding anyhow. It was so cold and it rained off and on but Hannah wouldn't give up. She fell a couple of times and her dad asked her if she was ready to quit and she told him, "no daddy I have to keep going for all the other kids". What a little doll she is. My oldest sister came to ride with her and between Dee and Terry they kept a real watchful eye on her.
I've had several people ask me for copies of newspaper articles and I've sent them but I don't know if your going to be able to view them very good.
Yesterday I had to take Hannah back to the Costas Center because Dr. Kelly wanted the broviac removed. He is convinced this is where the last two infections have come from. I was told that Dr. Gale (who is the greatest) would remove it as he does this for all the children in the Costas Center and/or surgery would. Dr. Gale was a little concerned before he even started working on her, he wasn't sure if he was feeling the cuff or not. The broviac's are supposed to pull out with a hard jerk. She was sedated but not completely under. She was feeling no pain though. Well naturally my Hannah had to be very complicated ... the broviac wasn't about to budge. He pulled and pulled and yanked and it wouldn't budge. After about 45 minutes of this he went in with scissors and started cutting away scar tissue where the line went into the chest. He kept cutting and cutting and cutting. Dr. Gale said he'd never had one so complicated as this, ever! He said the scar tissue from where it was inserted had become embedded around the plastic line!! He had no choice but to make an incision and used tweezers going in one hole and scissors going in the other ... another hour passed and I was about to faint (I think he was too) when I asked him to take her to surgery ... he said we couldn't as it was too late in the day! So he had to make a second incision and he was using two pairs of scissors and cutting away tissue and pulling and yanking ... finally he knew he wasn't going to get the cuff out of her chest and just cut the line in two. He pulled and got some from the top then from the bottom ... but ended up leaving the cuff. He said in the olden days they just left this cuff and the body just absorbed it. I was just so damn thankful it was finally over. She was so sore last night and I kept her home from school today too. Good thing I did because the Oxycodone wore off about 10:00 AM and she was crying out in pain. I gave her the last Oxycodone this morning and she has been fine since.
I have to take her back next Tuesday to be admitted for chemo but before that she will go to surgery where they will insert a new port on her left side. Remember the first one went bad? THAT was something they had never seen at Cardinal Glennon either. Leave it to my Hannah!
Dr. Kelly has always given me the preliminary CT Scan results in the past. He has even taken me down to look at the tumor on the test results for myself. However, yesterday he refused to even speak to me about the results ... even though I asked the nurse several times. He was in clinic too but wouldn't even see Hannah. He's never done that either! He told the nurse to tell me that the tumor board would be meeting Thursday morning about Hannah's case and they would review and decide what they wanted to do at that time. I am not sure what to make of it. It was almost like he was avoiding us or something. I called back this morning and begged Pat (his right hand) to read me the computer results and she asked Dr. Kelly and he said no that I had to wait until Thursday afternoon. Will let you know when we find out.
Our financial adviser from our bank sent us 5 tickets to the Circus tonight. We had a ball. It was me and Terry, Granda Keeton, Hannah and Jake. Jacob rode an elephant ... Hannah rode a pony and they ate and drank everything that the circus had to offer. Thank you Greg!
Take Care.
Love Cindi
  
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10/02/2003 - Bike A Thon Articles |
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| I think I screwed up and sent the wrong article with the wrong picture. No wonder your confused right?
 
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10/03/2003 - Not good news |
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| Dr. Kelly finally called this evening to discuss with us the findings of the CT Scan and to let us know what the tumor board has decided.
The tumor has grown since her last CT Scan. They had hoped it would be gone or at least shrunk enough to talk about doing surgery now. The last thing anyone expected was the tumor would start to grow again. The reason Dr. Kelly says is because she was off Cytoxan for 2 months and because her last round of chemo was given at a reduction of 75%. This obviously is not enough to kill the tumor and continue to shrink it.
We have to start facing some tough decisions in the next month or two. It was decided this morning by her team of doctors that we must get aggressive with this tumor again. Since her body can not tolerate the American chemo drugs they have to start her on the European chemo drugs. Dr. Kelly said it takes 5 days to give her these chemo drugs and she will be in the hospital an entire week every three weeks for treatment. They are going to do frequent CT Scans and watch the tumor more closely. There was some discussion about doing surgery now knowing the risks of the blood vessels ... but Dr. Kelly was adamant about not doing surgery yet ... he said it was imperative we find chemo drugs that will work first. Taking out the tumor does not cure Hannah of cancer. She must have a year of Chemo drugs after the removal of the tumor to assure it won't return. If the tumor would return her chances of survival would only be about 20% and we would have to move to Tennessee where St. Jude's hospital is.
She will be admitted Tuesday morning for surgery to insert her Chemo Port ... afterwords she will be transferred back to her favorite floor ... 4 North... where her favorite nurses are ... and will be started on the European chemo drugs.
We have a consultation with Dr. Kelly Monday to discuss what these drugs will do to her poor little body and to sign the consent forms giving them permission to do these terrible things to her.
 This news really hit Terry hard. He has been so positive all along. He was just devastated with the news today that he couldn't go to work. He said he needed to be with Hannah. He helped her with homework and they watched old videos of her when she was a baby. I on the other hand, knew this would happen once he took her off the Cytoxan. I knew it was growing when I bathed her a few weeks ago and seen how big her tummy was becoming again. When she gained 4 pounds I wasn't surprised a bit. Dr. Kelly didn't believe me at all when I tried to convince him this was happening either. But I did know ... I believe mothers know these things about our children ... it must be instinct or something similar.
I've sent along a picture of her taken just 2 days before she was diagnosed with cancer. She never got to play in a game but her coach gave her the uniform to keep and gave her her trophy at the bike a thon Saturday. Isn't that smile the most beautiful smile in the world.
I guess there's no need to remind you to please pray hard for Hannah to win this fight.
Love Cindi
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10/05/2003 - A note from Princess Hannah herself! |
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| Hello ... this is Hannah ... I wrote a letter and asked my mommy to e-mail it to you.
I am doing good. I like going to school very much. I really like spending time with mommy and Papa the best. Mommy bought us a new puppy for daddy's birthday. His name is Sumo Wrinkles. He got his name from me from when I was born. He is a Shar Pei puppy. When I was born I was a big girl already. I weighed almost 10 pounds and when the doctor seen me she said I looked like a Sumo Wrestler and daddy said I looked like a Shar Pei puppy. So that's how he got his name.
Cheryl is my friend from Make a Wish. She bought me this Princess costume. I really like it alot! Mommy let's me wear it to bed too. I feel like a princess when I wear it. It was nice of Cheryl to send it to me. Thank you Cheryl.
Thank you for helping me in my bike a thon for St. Jude's Hospital. It was lot's of fun. My daddy was fun to watch.
Thank you for praying for me all the time too.
Love Hannah
 
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10/07/2003 |
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| She was finally taken down today at 2:00. We got to meet Dr. Bower (the surgeon) and we both immediately felt confident that she would be in good hands. The insertion of the new Port went well ... while he was in there he searched for the "lost cuff" and couldn't find it either! He said it would be fine and would eventually "surface" one of these days. However, there is always that risk of getting an infection too ... Dr. Kelly smiled and said, "if anyone will get one you can be sure it will be Hannah too". Right now we aren't going to worry about it.
We went over the new European drug protocol this evening ... the risks are similar to what she was getting ... the only big difference is she is getting higher doses and it has to be administered over 5 days.
Because Hannah came out of anesthesia screaming and yelling bloody murder Dr. Kelly decided to wait until 9:00 AM to start her first dose. She was screaming and yelling because she wanted her mommy and because she didn't think she was going to wake up from the anesthesia ... poor baby ... she was really scared this time. She wouldn't let me move or get comfortable for the next hour either! She made me hold both of her hands and she cradled her head in the crook of my arm. She also wrapped one of her legs around mine so I "couldn't get away". Terry was so upset and hurt ... she screamed at him to "go away because she only wanted her mommy".
Besides being very sore tonight she is coming along great.
I'll update you again tomorrow.
Love Cindi
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10/11/2003 |
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| So far so good...Hannah seems to be tolerating these new Eurpopean drugs quite well. The doctors are giving her so many other drugs to stop her from getting sick ... and that seems to be doing the trick.
Last night around midnight Hannah had another one of her hysterical episodes. This was the worst one yet. Her nurse had to call the resident and she came up and couldn't believe what she was seeing. She had to call in another doctor and they wanted to strap her down so they could give her medication but Hannah wouldn't let them!! She was totally wild and violent and would have hurt anyone who came near her. After another 30 minutes or so she would let me talk to her, then eventually hold her, then allowed the doctors to sedate her.
I've spoken to Dr. Kelly three other times about this and he has dismissed it as being something very odd and "just Hannah being Hannah". I asked to see him one on one today and finally he got time and came to see me. I explained that this was very serious and that I wanted and Hannah needed answers. We talked about it for a long time and finally we think we figured it out. Hannah broke out in hives (she always does from Chemo) around 8:30 pm while I was bathing her. She was covered head to toe this time. Her nurse had to call the resident and have her come up ... naturally they were all gone by that time. She prescribed Benadryl and with that Hannah went to sleep. It was three hours later that she became hysterical. Dr. Kelly and I are convinced she's having severe reactions to the Benadryl. He has considered her to be allergic to it and won't allow her to have anything from the Benadryl family again.
Why she continues to have the hives in a mystery to Dr. Kelly. He says he has never seen this before and that if anyone would ever give him a run for his money that it would be Miss Hannah! He decided to prescribe Claritin for her twice a day in hopes that it would stop the hives completely. Tonight she did break out in them again, but certainly not what she had done the night before.
Hannah begged him to let her go to a Halloween Party in Chesterfield that Friends of Kids with Cancer is sponsoring and he agreed! He's letting her out on a pass for 3 hours tomorrow afternoon and she is so excited. She has to come back from the party early but decided not to rock the boat. Dr. Kelly goes out of his way to accommodate Hannah. They are buddies for sure. Hannah suggested her daddy take her to this party because "I never get to spend any time with him anymore" and those words just broke Terry's heart. He has tons to do tomorrow around the house because I'm not there to do it, but decided too bad and he's taking her. Boy am I glad ... I have tons to do myself.
Thank you to everyone who continues to pray for a miracle for our little Hannah.
Love, Cindi
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10/12/2003 |
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| Hannah is hanging in there like a little trooper. She never complains about anything (with the exception of anyone daring to touch her wounds). Today was the last day of chemo ... so after tomorrow at 2:00pm we can go home!
We have to come back Thursday for blood counts and if they are good we will go home until the following Tuesday. If the counts aren't good she will be admitted. Dr. Kelly said to expect Hannah to receive transfusions next week.
Thank you for your continued prayers for a miracle for Hannah.
Cindi
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10/16/2003 |
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| Hannah's appointment today went well. Her counts were still good ... Dr. Kelly was happy, Hannah was estatic and mommy was thrilled. Dr. Kelly did say he is on call this weekend and expects to hear from us though! On the way home Hannah and I decided that she was going to prove him wrong because she just felt too good. Wouldn't ya know that after putting her to bed at 8:30 tonight that she has been up three times crying and when I ask her why she tells me she just doesn't know. Great!
No fever though.
We're hanging in there.
Cindi
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10/24/2003 |
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| Tuesday Hannah's counts were great and today they remained great! We are really excited with her progress. Even though Dr. Kelly says it's only her first does we are gaining more hope everyday. Next Tuesday we go for another CT Scan and two days later the tumor board will meet and make the decision of whether Hannah will be admitted the following Monday for surgery or more Chemo.
Hannah has had this constant sinus drainage for the past few months. These last 2 weeks it has gotten much worse, she coughs so hard and has that barking noise in her chest. Dr. Kelly started her on an inhaler (she thinks that's just so cool) and it's seemed to really help. The bad news is that the cough may be permanent, a side effect of Chemo.
After a lengthy conversation today Dr. Kelly and I think we know more about what happens to Hannah at night. At the hospital and at home Hannah will wake up in the middle of the night just crying and screaming and when I run up to her she won't wake up and talk to me and tell me what's wrong. She just lays there with her eyes shut and cries. I have to bring her downstairs and give her some water and sit with her for about an hour and then she's just fine, like nothing ever happened. When I ask her what's wrong and why she does this she says she doesn't know why. She just can't wake up and doesn't "feel good anywhere". Dr. Kelly thinks she is having night terrors. This is a very real condition and for those of you that remember when Lisa was so ill Hannah had the night terrors at that time too. Dr. Kelly says that it's her way of dealing with all the stress. During the day she's so happy go lucky, her spirit just shines, and her attitude is amazing. At night is when the stress comes out which in turn causes the night terrors. Lisa and I came home from the hospital after 6 weeks and I could see the damage it done to Hannah. At the worst time in her little life (she was 4 years old) her mommy had abandoned her in her mind. I know I did what I had to for Lisa but I didn't realize the toll it had taken on Hannah. After a visit with her pediatrician she sent Hannah to a child psychologist and within 4 visits Hannah was better. The doctor said Hannah was on the road to recovery. What Hannah is doing now is "reliving or remembering" that abandonment and fear. We both decided it would be best for Hannah to see child psychologists from Cardinal Glennon as they specialize in chronic care. Since Lisa moved out a few months ago I know Hannah has missed her terribly ... which could be another part of the problem. Dr. Kelly said another reason she experiences the night terrors is because she's so darn smart. These very intelligent kids know so much more than you think they do about their condition ... Hannah is a prime example of being too smart for her own good.
It's been a great week for her overall ... and when Hannah has a great week Mommy does too! Thank you to everyone who continues to keep Hannah in your thoughts and prayers ... I know that miracle is just around the corner.
Love, Cindi
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10/28/2003 - Disappointing news |
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| This morning Hannah had her first CT Scan since her new European Chemotherapy treatment was started. We were all anticipating good news ... instead I was told the tumor had grown ... not a large amount but enough to tell us the new European drugs didn't work.
To make matters worse the CT and Ultrasound tests showed Hannah has a blood clot inside the tumor now. I asked about the danger of the blood clot and Dr. O'Connor told me there are different types of blood clots ... this one is not the kind that typically breaks off and spreads throughout the body. He said he was not going to promise that it wouldn't do this, just that it was unlikely.
Just to add to all this wonderful news today we found that the tumor is on top of and covering her right ureter. This is the "tube" that drains the urine from the kidneys into the bladder. She will have to have stints surgically inserted before the tumor can be removed now.
The final straw is that Dr. Kelly is on vacation this week. Couldn't have come at a worse time. By this evening all the surgeons had looked at the test results, the Radiologists and Dr. O'Connor who is covering for Dr. Kelly. There's alot they have to discuss and make decisions about with these new findings. Dr. Kelly of course has the final say ... but he's not here this week! He is still in town though and Dr. O'Connor said they would be contacting him but not until they had all the opinions from all the doctors on Hannah's team. The tumor board is scheduled to meet this Thursday about Hannah's case and Dr. Kelly was going to take the time to come in for that meeting (but didn't want anyone to know about it). Whether or not the other doctors will agree to let her go that long or not I don't know. Dr. O'Connor said to take Hannah home until we had more information from her team ... but to be prepared to bring her into the hospital at any given time.
I really don't think Dr. Kelly will agree to let Hannah undergo surgery. Last Thursday he told me that without knowing Hannah is getting the right chemo drugs that the surgery would be fruitless.
As usual Hannah is hanging in there like a little trooper. I asked her today what she thought about all this new stuff and she said she was a little worried. I asked her about what and she said "the risks associated with any surgery"! We were having lunch with Lisa and I thought I was going to fall off my chair! On the way home tonight I asked her if we were going to make a new deal like we did that first night in the ER when we received the devastating news, and she said, very matter of factly, "nope". I asked her why and she said, "cause we haven't broken the first one yet". She is one very amazing little girl.
Please say a few extra prayers tonight for Hannah.
Thanks
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10/29/2003 |
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| Finally talked with Dr. O'Connor late this afternoon and after consulting with surgery they have decided that they need to do the surgery next week. They said the risks of trying more chemotherapy were too great. They think there's a possibility they can get most if not all of it. The major risk is if they do get it all they will never know if the chemo she has to have the next year to kill the cancer cells in her tissue is working. The scary part is once the tumor is taken out, if the chemo drugs aren't working then the tumor will grow back and that will be considered a "relapse". At that point she would go to St. Jude's and only have a survival rate of 25%.
All this was decided by the doctor covering for Dr. Kelly. He is not aware of any of this. I begged Dr. O'Connor to please call him today but he wouldn't. He felt at this time that Dr. Kelly will agree with the surgeons. He is on vacation and won't return until Monday. The hospital has set up a conference with Terry and I and the surgery team and Dr. Kelly on Monday at 1:00 pm. They have scheduled her for surgery on Thursday if Terry and I and Dr. Kelly agrees to it.
I will keep you posted. I know you will all ask God to protect her during this difficult time. Yes, Terry and I are just devastated and could use prayers of our own too.
Love, Cindi
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