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09/01/2003 |
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| Hannah had a great time in Potosi at Camp Sunrise this weekend. She stayed quite busy and held up real well. She was sad to see all the fun come to an end and said she couldn't wait to go back next year!
Hope all is well with everyone.
Love, Cindi
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09/05/2003 |
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| I brought Hannah to the Costas Center this morning for a CBC (blood workup) and to have her urine checked for blood. She has been doing so good since receiving only the two chemo drugs 9 days ago ... until last night. She began vomiting and running a temperature then shivering. When we arrived at the Costas Center she asked to go to "Mickey's Bed" (it's a room that has a bed in it that looks like Mickey Mouse's). All who know Hannah knows she never asks to go to bed! She fell asleep within minutes and was sleeping for about 2 hours when Dr. Kelly came in and woke her up. Just in that short time she was sleeping her temperature rose to 104.2!! She also woke up covered in bruises again! Dr. Kelly said she would be admitted and given antibiotics and fluids. She really looked bad! She still has blood in her urine too.
I was so surprised that we were back to this point (low platelets again) given that she has been taken off Cytoxan. Dr. Kelly said it must have been the other chemo drug Actinomyacin. This drug is now giving her the same problem as the Cytoxan and at this point we have to make some hard decisions. We only have 2 choices ... one is to cut her way back on her regimen and admit her with tons of fluids, or to give her the European drugs. I hate the thought of either one. Her "team" here at Glennon will be weighing all the options and arriving at a decision soon.
She has been enjoying school so much. She asked me if she could take a Ballet class and join Girl Scouts. She has such a zest for life and refuses to let this thing called cancer bring her down. Dr. Chu told me today that he is so proud of her and wished all his patients had this spectacular attitude. He tells her she is his favorite patient and Hannah is always quick to run up to him and hug him ... she adores his attitude as much as he does hers.
Please continue to keep Hannah in your prayers.
Love, Cindi
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09/05/2003 |
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| All we know for sure is that Hannah tested positive for bacteria in her blood. We are trying to find out what type of bacteria it is to insure that she receives the correct type of antibiotics.
As usual, Hannah's spirits remain high. Her fever has dropped down to the 100's and remains there as long as she takes tylenol.
David, from Child Life (also her dear friend) brought Jeff Wilkins up to see her today. Hannah had no idea that he was the lead kicker for the St. Louis Rams but her sister and Grandpa did. Of course he brought her cool gifts and Hannah introduced him to her Pooze ... he asked her if he could bring some home to his daughter Brittney ... needless to say we made another fan of Pooze today!
Yesterday a rep from Basket of Hope brought Andy Benos to see Hannah. She had no idea that he was the retired pitcher of the St. Louis Cardinals either ... but she loved the TWO baskets of gifts he brought her. He absolutely adored her too (that's why she got TWO baskets instead of one).
Thank you all for keeping her in your prayers ... and please continue to keep up the good work.
Love, Cindi
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09/10/2003 |
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| FINALLY we are home! This stay was the hardest one yet! We didn't get out of the hospital until after 6:30 this evening as it was.
The findings this evening were somewhat hard to understand ... but I will try to explain it the best I can. We know that Hannah definitely has a bacteria infection, we know it is in her central line, we found out today this it is a staph infection. It gets confusing because there are different types of staph infections. They were afraid that it was a staph infection in her blood ... however, Dr. O'Conner was very happy today when he told us that it is a contamination staph infection (in the line) and not in the blood. Does that make sense? He said a contamination staph infection could have been something extremely simple like touching a necklace ... he went on to say that more than 85% of immune suppressed kids will get these. Since she has been on antibodies all these past 6 days he took her off of them and sent us home without an IV pole of antibiotics. He said it's very important that immune suppressed children not build up a tolerance to these drugs ... because when they need them the most they want to make sure that they will work.
He said she could go to school tomorrow as long as the school will watch her very closely. Any symptoms of fever or being tired or not eating we will need to return to the hospital. I personally think it's too much to ask the school to do so I intend to keep her home with me tomorrow and Wednesday. We have to go back for another blood culture Thursday to make sure she's not growing something else!
I'm exhausted and ready to relax ... talk to you all soon.
Thanks so much for all your prayers ...
Cindi
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09/17/2003 |
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| From now on I think I will be sending out the updates on Hannah Grace myself. Thank you Jackie for all you've done managing this massive list for the past 4 months.
I took Hannah in yesterday and she received her chemo. She immediately started sneezing and breaking out in red blotches ... we gave her benadryl and that seemed to help. She did wake up crying in the middle of the night but it was nothing like the hysterics that she has had in the past. She was sick at the stomach this morning and wouldn't eat anything ... but surprised me by drinking a whole carton of milk. After zofran she felt much better and has ate really good today. She had to come home on IV fluids today ... what an ORDEAL this has been! She has this 2 gallon IV bag stuffed into a backpack which is so heavy that she can't even wear it!!! The good news is by morning that it will be half empty! I still think it will be too heavy for her to be able to lift and take to school ... but she is adamant and wants to go. I'm thinking after being up all night last night that tonight is going to be a repeat ... only worse because she is going to have to remember that she's got this heavy thing she has to carry to the bathroom every time she goes! She went last night at least 10 times.
This coming week will be a very important week. We will find out if Hannah can tolerate the new dose of chemotherapy drugs...we have to pray that she can.
Take Care.
Love, Cindi
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09/20/2003 - A favor to ask |
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| If you get time this week I was wondering if you would all take a moment to look at this website http://www.kidscancerstamp.org/sampleletter.htm . You will find directions on how to copy and paste your own personal letter asking the U. S. Postal Service to issue a commemorative stamp for Childhood Cancer Awareness. Perhaps if enough letters are sent then maybe they will reconsider their decision.
Raising awareness is a goal Hannah and I have set for ourselves. Please take a moment to help us achieve this goal.
Thank you very much.
Love,
Cindi and Hannah
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09/22/2003 |
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| Hannah will be riding in the Wheels for Life Bike A Thon this Saturday. It starts at her school in Staunton and is from 2:00 to 4:00. As most of you already know this is Childhood Cancer Awareness month and Hannah and I are trying to do our best to raise awareness to this tragic and devastating disease. If you are interested in sponsoring Hannah in this Bike A Thon please e-mail me and let me know and I will sign you up on her list.
This should be really cute ... Hannah is very uncoordinated and has a hard time on her bicycle ... and this has nothing to do with Chemotherapy and/or Cancer either!
If you want to make a tax deductible donation with a check, please make it payable to St. Jude's Children's Research Hospital. If you don't mind mailing them to my house I would appreciate it ... the address is 8094 E. Frontage Road, New Douglas, IL 62074.
Because Hannah is due to "bottom out" by the weekend I would suggest doing what everyone else already has done ... that is to just make a flat donation.
I know I mentioned that Hannah and I have decided to do everything within our power to help bring childhood cancer awareness to the forefront. It's the only way to help find more cures and fund more research to end this devastating and tragic disease. We appreciate your help in any way you can.
My daughter Lisa and I will be setting up a table at this Bike A Thon and will be selling the Gold Ribbon Pins that is a symbol of Childhood Cancer Awareness. The cost of these pins will be $5.00 each. I will be sending out another e-mail addressing a fund raiser for this though.
Thank you all so much for everything.
All our love,
Cindi and Hannah
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09/23/2003 |
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| Took Hannah to the Costas Center today for a checkup. Her counts were low but not surprisingly so. However, as we were sitting with Dr. Kelly she started popping out bruises everywhere. This is a sign of low platelets and it's ok that she has low platelets, it's to be expected ... but not to the extent that she has been dropping to. Dr. Kelly was somewhat disappointed with all the bruising but overall she has done very well (so far) this treatment. He wants to see her back Friday for another blood count just to make sure.
She was so cute today with her Wheels for Life Bike A Thon forms. She hit up everyone of her nurses and doctors in the Costas Center then went upstairs to her favorite 4th floor and got all of them to sign up too! She is so loved and adored by Cardinal Glennon that I think they would sign up for just about anything as long as it made Hannah happy. When we pull in the parking lot Hannah always says to me, "Mommy, I just love this hospital". How very, very lucky we are. As much as they love her she too loves them.
Her next CT Scan is scheduled for next Tuesday ... can't wait for those results.
Thanks you all your love, support and prayers.
Cindi
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09/24/2003 |
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| Last night just after midnight Hannah woke up from a sound sleep screaming in pain that her tummy hurt. She was also running a fever of 102.4. I called and woke up Dr. O'Conner and because we had just been in the Costas Center and checked her counts earlier in the day he said to give her Tylenol and bring her in the hospital in the morning. Even though her counts were low earlier in the day ... they weren't that low!.
After an hour or so we finally got her to settle down and I put her back to bed. By 2:30 this morning she was up screaming with side pain and a fever of 104.8 (that's as high as my thermometer goes). I knew that we would be going straight to the hospital and I called poor Dr. O'Conner once again so he could make the arrangements.
She continues to run high fevers, cold chills and uncontrolable shaking off and on all day today. She has not been out of bed and and won't eat and drink without mommy begging her to. Thank goodness she has slept most of the day away.
By the time the doctors rounded this evening they found the blood cultures had tested positive and she is growing all kinds of bacteria again. They suspect her central line but won't know until the test results come back. This is the same thing that happened two weeks ago when we were here for 6 days. Dr. Kelly said we are going to have a talk about replacing the broviac line and putting in another port (which she had in the beginning and it went bad too).
Who knows how long we will be here this time. Dr. Kelly did say since she has all these wonderful people pulling for her to be in the Bike A Thon Saturday that he would do his best to have her home by then. That made Hannah smile.
Keep her in your prayers.
Love, Cindi
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09/25/2003 |
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| Hannah is much better today. Her fever has broke and she is right where she has been the past few months at 99.8. She's been up and out of bed and playing all day. The doctors didn't tell me what the growth showed in the culture today ... they were too busy, this hospital is full to capacity. Dr. Kelly did say early this morning it is for sure the central line and that it should be replaced ... down the road though.
Her next CT Scan is this Tuesday.
Dr. Kelly said she will hopefully be able to go home tomorrow with IV antibiotics. Which means it would be very difficult for her to ride a bike ... so her daddy went home today and dug out of the barn an old cart that hooks to the back of his bicycle. He used to ride her around in it when she was little. It's real cute with the big back wheels and it has a cover on it so she can't get wet should it rain. I told her it's covered in bird crap and very dirty, but by the time we were down with it that it would look like a princess carriage. Let's hope I'm right. It's green and yellow and I told Terry if I was home I would have taken the time to have painted it pink and white! I know I'm crazy but anything to bring a smile to her face. She's been a little upset today that she has to be rode instead of riding herself, she says that it's not really fair to her "fans". I told her that she would be riding because she has her own wheels too!! The Staunton Star Times featured three big articles on her this week and it sounds like she will have a great turn out.
Our future "cancer scientist" who has a goal of growing up to find a cure for childhood cancer asked me today what would happen if the money people were sponsoring her with helped St. Jude's Research Hospital beat her to her goal. I was so glad the phone rang and I didn't have to answer that question ... I'm looking for an answer to give her ... anyone got any bright ideas to pass along to me?
Thanks to everyone for your prayers ... they are obviously working.
Love, Cindi
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