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08/05/2003 |
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| I'm sorry I haven't had the chance to update you before now. My computer went out and it just occured to me to pull out the laptop my niece let me borrow. Duh!
Hannah has been doing so good since receiving Chemo last Tuesday. She was eating and drinking and playing and it's the best I've seen her since before she got sick. I guess all good things must come to an end sometime though ... last night when Hannah went to the bathroom it was full of blood. Yes, low platelets again. When they took her blood counts I was just amazed. Sometimes it's hard to believe how strong kids are. They transfused her with platelets and red blood and gave her fluids. She started bleeding in her mouth and she had sores on the roof of her mouth too. This morning we just watched the bruises pop up all over her arms and legs. She looks just terrible. Getting her to eat and drink now is about a joke too. Dr. Kelly says that she can't continue reacting this way to "Cytoxen" and now has to cut her back to 75% of this drug. He hates to do this but has no choice.
Today we scheduled her for her CT Scan of the abdomen and pelvis for next Tuesday. Yes it is time to start talking about surgery. Her right leg is larger these past 3 days and the doctor figures it's the tumor bleeding due to low platelets.
Dr. Kelly agreed to let Hannah come home today even though the "older doctors" just about had a heart attack (each doctor has their own way) on one condition ... that she drink lot's of water! By the time we got home it was almost 7:00 pm and she was such a good girl and drank 8 oz for me before dragging herself up to bed. Dr. Kelly said he would see us Thursday (if not tomorrow) where he will repeat her blood work to make sure she's keeping those platelets she got today. He decided against giving her the single booster of Chemo today.
I could keep writing on and on but I'm so tired I'm going to grab a bath and hit the bed myself. We're hanging in there and Hannah's spirits are high and she's such a trooper. Please keep her in your prayers!
Love Cindi
P.S. The blood supply is so low right now that Dr. Kelly was really worried about getting platelets and blood for her today! I just can't believe that!! When I told him that people were donating for Hannah constantly he called the Red Cross and relayed that message and sure enough there was no problem with them sending the blood right over. Today the red blood she was given was from a blood relative who donated on 7/24/03. Thank you to whomever that was and just realize that the gift of life from you was given to Hannah today.
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08/08/2003 |
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| Today Hannah still has very bloody urine. Her platelets have jumped from 7 to 70 though! She has lot's of bruises and mouth sores, but her spirits are high. The game plan is to watch her as she peaked a fever of 101 again today. If her urine will clear up we can go home tomorrow ... if not I'm not sure what's going to happen.
Thanks for your prayers.
Love, Cindi
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08/08/2003 - Note from Kitty on Radiothon |
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| This was sent to Cindi by Hannah's nurse regarding their radio experience. Thank you to all of you who met my challenge to sign up for the 12x12 pack. Some of you may still have Hannah's picture I sent in May of Hannah with the sunflowers. You can see the toll it's taking on her little body - but she's a fighter and with all our prayers I just know she's gonna make it just fine. Let's just keep praying it's without too many setbacks along the way. It's also not too late to give blood, as you have read with previous emails - she needs it often.
Subject: Children's Miracle Network Radiothon
 Yesterday and today, the crew from 101 The River and Children's Miracle Network (CMN) broadcast live from the Atrium at Cardinal Glennon. Dozens of parents and children sat across the table from co-hosts Vic Porcelli and Trish Gazall to share their experiences with our tremendous staff. St. Louis listeners called in pledges to support CMN and their fine work in the community.
One of the many proud families served by our hospital. Families of current and past patients shared many heartfelt stories of courage and compassion.
Friends of the hospital -- all family members of Glennon employees and CMN volunteers.
CMN volunteers taking pledges from St. Louis listeners.
This little angel delighted The River staff, volunteers, and a large crowd with her charm and sweetness. She was wearing a cute fuzzy pink hat and a bathrobe with little white angel wings. (Hannah Keeton)
Kevin Body, the American Heart Association Child of the Year. He came today not to speak about his own case, but about Spencer, his best friend while he was in the hospital. Here he sits with Spencer's parents, who come to share their story.
Special thanks to CMN and 101 The River for bringing this superb event to Glennon; to the CMN volunteers who gave so freely of their time; the people of the St. Louis region for making those important calls; Child Life for working so closely with CMN; and all those fantastic employees who worked this event in addition to their usual tasks: Security, Environmental Services, Nutrition Services, Telecommunications, and Facilities.
Mark Zeman, Communications Specialist
Public Relations and Marketing
SSM Cardinal Glennon Children's Hospital
1465 South Grand Boulevard
St. Louis, Missouri 63104-1095
(314) 577-5693
www.cardinalglennon.com
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08/13/2003 |
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| This morning Hannah had a CT Scan and the news is wonderful! Comparing the scan from this morning to the scan from June shows the tumor has shrunk by approximately 75% ... or 1/5 the size!! Dr. Kelly said the tumor has shrunk dramatically and is approximately 3 cm by 2.5 cm. The closest I could come to that is about the size of a golf ball. What an incredible difference!
Dr. Kelly said the tumor is down deep inside the pelvis and there is still concern with the ureters, but Hannah would be put on the surgery consultation meeting which is held every Thursday morning. We are going ahead with scheduling her big dose of Chemo next Tuesday where she will be admitted. Dr. Kelly isn't sure if the surgeons will want to continue trying to shrink it more or if they will want to be aggressive and start the ball rolling.
Today was her first day of tutoring with Tom. Hannah just loves this man (she calls him Tom the "toot tooter"). Tom is almost as crazy about her too. He told me he can't tutor her with entry level first grade work, she's much too smart ... his game plan after today is to start her at second grade level. I'm going to brag here a minute and tell you that he told me today that he has been tutoring children for 23 years and Hannah is the smartest child he's ever had!
Hannah is to start school in Staunton next Tuesday. She won't be able to make it though because she will be at the hospital receiving her VAC of chemo. The following week her counts will begin to drop so probably the beginning of September will be her first days of school. She really, really wants to go ... it's mommy that is having a hard time sending her.
Since my computer is up and running now, and the virus' are gone I should be able to start answering some of your e-mails.
Thank you, thank you, thank you for all your prayers ... as we can see they are being answered.
Love, Cindi
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08/19/2003 |
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| Jackie is on vacation this week so you'll have to settle for me sending my own mail out. I hope I'm not missing anyone ... but if I do it wasn't intentional!
Hannah has been doing really good this last week and weekend. Sunday she spiked a fever and we were very close to the magic number of 101 ... but she stayed just under it so we were lucky.
She is SO excited about starting school that she is about to bust! I don't think she will be able to go this week though ... and next week her counts should be bottoming out so the following week she might be able to start.
We go in the morning to be admitted for her VAC of Chemo. Hopefully we will be home the next day.
Hope everyone is doing alright and thanks once again for all your prayers and kindness.
Love, Cindi
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08/19/2003 |
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| Took Hannah to the hospital today for her big round of Chemotherapy and Dr. Kelly informed us that he had bad news ... Hannah is still testing positive for blood in her urine. He told us it is one of two reasons ... because she has developed a viral or bacteria infection and/or that this was a side effect of Cytoxan (one of the Chemo drugs). Dr. Kelly tried to get us in to see the Renal doctors today but couldn't ... we will see them Friday morning. He also took a family history of kidney disease today. I'm hoping and praying that it's the viral or bacteria infection causing this problem ... if it's the Cytoxan we could be in big trouble. He also told me that he has seen this type of problem before from the Cytoxan but not this early. She hasn't even had radiation yet!
So I guess I will send Hannah to school tomorrow morning ... much to my dismay, but much to her delight.
Love, Cindi
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08/20/2003 - Hannah's First Day of First Grade! |
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| This morning we tearfully took Hannah to first grade ... and left her there. She was so excited and happy to be there. She didn't even look back and tell me by or to have a good day or anything!
 The school has really rolled out the red carpet for her ... we are SO lucky. I just know it's going to be an outstanding school year for Hannah because of this school's attitude. Tomorrow they plan to play the video, "Why Charlie Brown, Why". It's tells the story about a girl who has cancer and explains what childhood cancer is and why she is bald and why she will be missing so much school. They plan to have the student body watch the tape together. Her teacher told me that tomorrow is "Hat Day" and all the students get to wear a hat to class.
I have to confess that I couldn't stand it anymore and called the school nurse about 12:30 today and she told me she had seen Hannah at the library this morning about 9:30 and she was FINE! Then she told me she would go outside and check the playground and call me back. When she did she told me that Hannah wasn't outside but was in her classroom cooling off ... she got hot outside and had to come in and drink two glasses of water ... what a good girl! Because of the chemo drugs she can't handle any hot or cold temperatures. The nurse had brought Hannah down with her to talk to me for a minute and she sounded WONDERFUL!
Let's just hope and pray that the news on Friday from her renal doctors is good ... I'm really concerned.
Thanks again for all your prayers, love and support.
Love, Cindi
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08/26/2003 |
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| Hannah has been doing really good ... eating like a little pig and enjoying school and her spirits are high. I took her to the Costas Center today and Dr. Kelly said her urine from last Friday was "fine". What I forgot to ask was if that meant it was clear of blood or infection. He told me today that he had planned on giving her a low dose of the Cytoxan, but because she has plans to go to "Camp Sunrise" this weekend he wanted to hold it. She did receive the other two Chemo drugs ... and she has tolerated them just fine ... so far!
Before we left this afternoon I thought to ask the nurse how Hannah's urine from this morning was and she told me it did have blood in it ... said she would leave the results for Dr. Kelly to see as soon as he returned.
Hannah has been eating like a little piggy ... and I'm not kidding one bit .... yet she still managed to loose a pound ... so there is some concern about that too.
Cardinal Glennon gave her tickets to tomorrow nights Cardinal Baseball game ... just depends on the heat though if she will get to go or not. She is really excited about going and has invited both her grandpa's and mommy, sissy and brother.
Take Care and please keep Hannah in your prayers.
Love, Cindi
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08/29/2003 |
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| Hannah has been feeling surprisingly well since receiving the two chemo drugs Tuesday. I guess the Cytoxan really is the worst of the three.
She has been enjoying school so much. She'll have 4 days in this week! Her teacher pulled me aside when I picked her up today to tell me that they put Hannah in an Accelerated Reading program for first grade. After reading two books and doing so well on the tests they put her in the Accelerated Reading program for second grade ... and she did extremely well on that too. They informed me that's as high as they can go with her right now ... even though she's ready for more of a challenge. She has complained twice this week that first grade was "boring". Guess Tom the "toot tutor" and I will just have to find more for her to do at home.
This is the weekend that the American Cancer Society is sponsoring "Camp Sunrise". It's an entire weekend completely paid for and promises to be lot's of fun for Hannah. We will be leaving Saturday morning and won't return until late Monday.
If you don't hear from us you can be assured all is well.
Love, Cindi
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