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Old 03-12-2009, 11:31 AM   #201
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SECOND POST FOR TODAY

THURSDAY, MARCH 12, 2009 12:53 PM, CDT

Hello again,

Sicily is now getting her pint of O positive blood. When the nurse brought in the bag of dark red life sustaining liquid, Sicily exclaimed, "There's my blood!" Like they just brought her a milkshake. I will enjoy watching her lips resume their natural color.

We will be going downstairs here soon for a "photo shoot"...the hospital marketing director met with Sicily and I this morning and asked if they could take pictures of Sicily to use for a publication. I think it's for a Welfare League that donates supplies to the hospital library, or something to that matter. I will find out more when we go downstairs. They said they wanted some pictures of me holding her as I read a book to her...love that! So, I'll report later how it goes. Good thing I curled my hair and put on make-up this morning! Tomorrow would've been a different story! ; )

Sicily's transfusion should take around three hours then we can start her first chemo. I think the snow has let up, but it looks awfully cold outside, still! Thanks for all the prayers! I feel calm and relaxed right now!

Kerry
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Old 03-12-2009, 12:25 PM   #202
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Just amazing when I read these posts. God bless this family!
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Old 03-13-2009, 08:13 AM   #203
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FRIDAY, MARCH 13, 2009 10:43 AM, CDT

Hello again,

Second posting for the day...current update on previous journal. A nursing student is taking Sicily for a walk...she has shown a special interest in her. I walked part way down the hall with them and turned around to come back to the room.

In a corner room across the hall from us is a precious little girl who's mother I met not long ago in the oncology clinic downstairs. I could here her crying in pain. She is a beautiful little lady named Esther and she is really battling right now. I want to storm the Heaven's with prayers for her and her beautiful family. I believe Esther is fighting neuroblastoma. I can't even tell you how hard it is to hear her cries...I wish there was something I could do. There is...asking each and every one of you to pray, pray, pray!

Her site is www.caringbridge.org/visit/estherjoy Please leave them a message if you could, as well. I don't know if her mom will even remember me and it looks like her site isn't updated or checked very often, but I want them to know that there are people everywhere who care. Thank you all! We know the power of prayer!

Kerry
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Old 03-13-2009, 08:17 AM   #204
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FRIDAY, MARCH 13, 2009 09:57 AM, CDT

Morning,

Sicily is doing pretty good. She woke up twice in the night to use the bathroom and a little after 7:00 she threw up, really just bile. She did that about three times, but said her tummy didn't hurt and she's not running a fever, so it's just a late side affect of her treatment, most likely. The chemo has cumulative effects so the longer she is on these drugs, the more likely she will start to have and experience affects.

She received some Zofran and is now eating fruity Cheerios. I think we finally found something she may like and actually eat for breakfast here in the hospital. We've tried about everything on the menu. Yeah Cherrios!

Yesterday afternoon was fun when Sicily got to ride in a red wagon downstairs to the hospital library/media center for her fifteen minutes of fame. I worried that she may not do very good as she was looking extremely tired and she was in the middle of her blood transfusion. These pictures will be for the Junior League of Tulsa's monthly publication. The first pictures taken were with one of the leagues volunteers and is supposed to be on the cover. Once the photographer raised his camera into position, Sicily's smile appeared bright and cheerful. Every time he stopped to check the picture or adjust his camera, stoic Sicily would re-appear, smile completely gone. Camera up, smile on. The other ladies in the room, along with Sicily's nurse who had to accompany us, laughed. It was like she had an on/off switch. I was very proud of her for handling it even though I know she was tired and a bit weary. The photographer took some pictures of her an I in the hospital lobby, as well. The issue is supposed to be out in April or May and they promised to send me some copies. It was a sweet experience.

We came back up to her room and she crawled in bed and fell asleep. She received her first chemo around 4:00, I think...time is starting to be hard for me to keep track of. If that is correct, she should be able to start today around 2:00. We had hopes that she would be able to go home on Saturday, but with the transfusion, we most likely will be here until sometime on Sunday. But that's okay...whatever it takes for her.

I just know she prefers to be home, as we all do. She keeps repeating this time how she won't be here too long. Not that she has any concept of time. So trying to explain that we'll be here until Sunday, really doesn't mean much to her. The best words for her ears to hear are, "We're going home today!" Soon, princess, soon!

She is begging to go for a walk so I'd better go. On last thing, and I hate to even vent about it, but last night there was a new patient admitted and I think the entire family was on the floor with him...at least twenty people. This is supposed to be a "sterile" floor and environment. Sicily and I went for a walk and when we passed by this group appearing to have what seemed like a party, I told Sicily we had to go back to her room. We might as well have been in the middle of Wal-Mart...people everywhere, some coughing. Didn't quite get it. I didn't complain as our room is far enough away, but I wasn't very happy about it. There are other places in the hospital to congregate...this is were our children are supposed to be able to rest and not be over-exposed to germs. If it continues to happen, I will speak up. I will do whatever I need to do to protect Sicily and her compromised immune system! Sorry...just needed to get that off my chest! Sicily is patiently waiting for our morning walk, so I'd better go. More later! Love to you all!

Kerry
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Old 03-14-2009, 04:43 PM   #205
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SATURDAY, MARCH 14, 2009 01:44 PM, CDT

Good Saturday afternoon,

Not a lot to report. Patrick is on daddy duty at the hospital with Sicily and they just called to say they are getting ready to take a little nap. They were given the option of getting to come home today...at midnight. I told Patrick I'd take that and at least get to spend half the night in your own bed. They'll just wait and see how it goes.

He reports that she is doing pretty good, although is cranky. She still wants to walk the halls non-stop, and when Patrick does get her to go back to the room for a bit (so he can at least take a quick shower) she'll stand at the door and just look out into the hallway.

Yesterday was nice to have some nursing students around to observe. They are a lot of help as the nurses and techs assigned are usually very busy and running from patient to patient and don't have a lot of extra time to do much else. The nurses director, with whom I spoke to for awhile yesterday, asked if she could assign another student to be with us when we return in a few weeks. I said, "Are you kidding?" She can assign us a whole class! That way they can all take turns wearing paths down the hallways! Even though Sicily may not say much to them, I know that she enjoys the attention and the break from mommy!

The hospital has a great group of people working with us. When you are there so often, you really become fond of some of the nurses and techs and it makes it easier for me each time as I feel like they know us. And I've also come to the realization that I should actually look forward to Sicily's hospital stays...I get to be around other adults who I can at least smile at or make eye contact with (totally lacking during the day at home!). I don't worry about laundry or cooking while there, and I get to brush up on my word find skills!

We really like the team of doctors as well. They are never in a rush and tend to listen to any concerns or questions we might have. All in all, I think our decision to stay local for treatment was a really good one. We are still under the care of Dr. Meyer in OKC, as well. So we have a lot of watchful eyes monitoring Sicily and her progress.

The other three kiddos are doing well and have actually ventured outside to play for awhile. I'm trying to figure out what room in the house to tackle first...since that is such a tough decision, I ended up in the office on the computer instead. Oh well, better at least pretend to be productive! ; )

Sicily's Make-A-Wish is being finalized...she should have playground equipment in the backyard in time for her fourth birthday. Elias is as about as excited as anyone. He keeps saying, "I can't wait for Sicily to get her wish!" Mommy can't wait either. She will be able to play for hours and hours and just enjoy being a kid!

Thank you all for answering the call for prayers for our little friend Esther. If you could see her in person, your heart would just melt. She is so precious! I'm praying she gets kicked out of this hospital in time for Tuesday so she can be "Leaving On A Jet Plane" for Pennsylvania. Keep those prayers rolling for Esther, Hollyn and all the children and their families battling right now. Love to you all!

Kerry
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Old 03-15-2009, 12:43 PM   #206
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SUNDAY, MARCH 15, 2009 02:02 PM, CDT

Good Sunday afternoon,

Just a quick little update. Sicily and Patrick made it home last night, or rather early this morning about 12:30 am. She was so happy to be home. We had her lay in a little cot in our bedroom as she still needed to be under a watchful eye. We needed to get her up to use the bathroom and drink some water sometime during the night. My maternal alarm clock went off at exactly 4:00am and I woke Sicily up and she complied completely. When I tucked her back in, she said, "Love you mommy, love you daddy!" Even though we didn't sleep great, it was still so good to have her home again.

We are officially at the half way point. We can see the light at the end of this treatment tunnel. It feels good to have half of this under our belt and to have Sicily doing so well.

It's 55 degrees outside and a bit on the cloudy side, but she is outside playing like a little girl should. And she's very happy! She can't wait for family to come visit us tomorrow! I was talking to my sister-in-law, Valerie, last night on the phone and told her I'm going to try harder to not look at the hospital stays as a negative thing. Besides, like I've said before, there are many positives to it (no cooking, no laundry and such) and I must focus on those things and enjoy it for what it is...precious time spent with Sicily!

Speaking of which, better go see what she and the others are up to! I put up a Christmas tree in the upstairs family room yesterday and we are going to decorate it as an "Easter tree!" The kids are excited and I've come to the conclusion that life is too short to worry about what other people think in instances like these...and yes, Patrick just nods and goes with the flow! ; )

Everyone have a blessed Sunday...we sure will! Thanks be to God!

Kerry
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Old 03-18-2009, 02:03 AM   #207
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TUESDAY, MARCH 17, 2009 10:17 PM, CDT

Happy St. Patrick's Day, all!

We're doing good. Sicily is on cloud nine as she has a house full of cousins, aunts and grandparents to have fun with.

Her cousin, Jordan, who is in second grade, chose Sicily to send her "Flat Stanley" project to. For those of you who aren't familiar with Flat Stanley, it's a book about a little boy who becomes flat and is able to mail himself places. Jordan made a Flat Stanley of herself, and her "Flat Jordan" will go places with Sicily and pictures will be taken and a story written. Unfortunately, Sicily doesn't get to go many places, but she held Flat Jordan as she received her Neupogen shot, and she will accompany us, along with "real Jordan," to her oncology clinic appointment on Thursday. We'll take pictures there as well. Sicily can hold Flat Jordan as she gets her port accessed and while getting her Vincristine. I thought it was so sweet that Jordan chose her. They are really close.

Anyway, if you don't hear from me until after Thursday, when I will report Sicily's numbers, just picture her running around playing with siblings and cousins and having a grand old time...because that is exactly what she'll be doing.

Please continue to play for Hollyn and all the precious children entrenched in this battle. Haven't heard if Esther made to Pennsylvania...I so pray that she did! Love to you all!

Kerry
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Old 03-19-2009, 11:46 AM   #208
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A sweet bump for sweet Sicily.
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Old 03-20-2009, 07:16 AM   #209
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FRIDAY, MARCH 20, 2009 09:16 AM, CDT

Hello all,

Sorry for not sending an update yesterday. We were busy and it was a good busy. Sicily loved having family here and the time just went too fast!

Sicily's appointment went very well and her numbers are around 1000. Not sure if they are on the way back up or on the way down...no way to really tell. We will need to continue her shots over the weekend and we have another appointment on Monday to check her counts again.

Yesterday was her last dose of Vincristine so now we will just have the inpatient stays every three weeks for chemo. We'll still go in to the clinic at least once a week for a CBC, but the thought that the chemo is starting to dwindle is good, most of the time. The thought of chemo being done still scares me. At least while she's on chemo, there is a sense of security...like we have a safety net. When the chemo stops, I think a lot of my worries will come to a head. I will look at Sicily and wonder, could something still be there? Is something abnormal growing again. I will not let it consume me, but I know it won't ever be far from my mind.

I slept horrible last night. For those of you who have been following our little friend Esther, you know that they received devastating news. Once in Pennsylvania, it was determined that Esther was full of tumor and they decided to send her home to be with family as there is nothing left to do. Patrick and I are both hurting right now. We were only around her for a brief time, but she is something really special.

When Patrick was staying with Sicily last Saturday, Esther and her mom came into Sicily's room and Esther gave Sicily a cute little pink stuffed monkey. I put that little monkey on a shelf in the living room last night as Patrick and I sat and talked about Esther before bed. This really hit close to home for us. It's one thing to be sad about a child I follow on the internet via their carepage, but to have actually met and cared about one in person...it's hard.

I HATE cancer...I can't say that enough! By the way, our little monkey friend has been named Esther and she will forever have a place in our home as Esther will forever have a place in our hearts. I'm praying right now that Esther not be in unbearable pain, and that she can be surrounded by all the people she loves and who love her dearly! Thank you all who joined in on the prayer requests! I know God heard us, but He just wants her to come home to Him! Her work on earth is almost done. Love you all and thanks, again, for all you do for us!

Kerry

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Old 03-20-2009, 10:40 PM   #210
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I hate cancer, too! It takes the lives of too many people, and takes away the childhoods of too many children. I pray that cancer research is successful in finding cures for the many types of cancer that ail all children and adults in our world!

God bless little Sicily and her precious friend Ester!

Hugs and Blessings,
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Old 03-21-2009, 07:35 AM   #211
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Thank you so much Jane for your thoughts and prayers.
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Old 03-22-2009, 12:19 PM   #212
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SUNDAY, MARCH 22, 2009 12:41 PM, CDT

Good Sunday afternoon,

And what a beautiful spring afternoon it is. It's a comfortable seventy degrees and Patrick and the kids have been able to do a few little projects outside. I think they are planning on planting some strawberry plants as that is one of our favorite fresh fruits in the summertime. We've had a strawberry garden in about every house we've ever lived in (about four)...kind of a tradition with us. Everyone enjoys looking after it and picking those beautiful red heart shaped pieces of fruit!

I'm trying to stay inside even though I'd love to be outdoors. My good luck ran out as I am now battling some respiratory ailments. Nothing too bad, thankfully. More of just a nuisance and inconvenience!

Sicily is doing good...loving the weather and the ability to be outside...her very favorite place to be! She has a bit of a purple upper lip as a result of a sports injury last night at the hands of Elias. Patrick, Elias and Sicily were playing a little ball in the front yard when Elias tried to throw the hollow plastic ball back to dad and instead it ended up kissing Sicily smack dab in the mouth. It swelled a little but looks okay today. Elias felt really bad, but we just reminded him that we need to be a little more cautious in those circumstances when Sicily is involved. He usually wears his heart on his sleeve and feels bad when people are hurting.

On Friday, he leaned over my shoulder when I was reading Esther's CB site and he asked me some questions about her. When I explained her situation, he turned around and left the room. About ten minutes later, he came down the stairs with a red face and sad eyes. I asked him if he was sad because of Esther, and he said yes, and began to cry. I sat him down and told him that we were all sad and wished there was something we could do. But I also explained how mature and strong Esther is and that she knows she may be leaving soon and going to heaven to be with Jesus. Elias perked up a bit and asked, "and Grandpa, too?" Caught by surprise, I responded, "Yes, I bet she may get to meet your grandpa Zeka, as well, and together they can watch out for all the people they care for!"

Elias' Grandpa Zeka passed away right before he turned four years old and he took it very hard. I think telling him that Esther will be in heaven with Grandpa made him feel a little bit better. But through out the day on Friday, I would catch him deep in thought and he would make comments like, "I sure wish that little girl didn't have to die!" I said, "Me too, but I know that she is happy that she will be with Jesus soon!" He laid down on the couch for awhile and I gave him the little pink "Esther" monkey to hold and told him about how Esther gave that little monkey to Sicily and it will help us to always remember her and how special she was...and still is. His ability to grasp such a mature matter as this really tugs at my heart strings and I wish I could help him not to "feel" so much, but that is just who that little guy is! What a little sweetheart!

Spring break is coming to a close for us, but it was a very good and much needed break and we enjoyed every bit of it. I think the kids are ready for summer to get here with all the freedom that was felt this past week! It will be here before we know it!

Sicily has an appointment at the clinic tomorrow morning around 10:45 to check her counts. I'd be surprised if her numbers are low as she sure has a lot of energy and spunk...but when does this girl not have energy and spunk? ; ) A true gift from God!

Everyone enjoy your Sunday and please keep praying for our friends, Esther and Hollyn, as well as all the children and their families that are on this cancer journey!

Kerry

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Old 03-23-2009, 12:28 PM   #213
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MONDAY, MARCH 23, 2009 12:46 PM, CDT

Hello,

We just returned from the oncology clinic. Sicily's counts are around 1500. They still want us to continue her last two Neupogen shots because they'd like her to be a little higher. Her hemoglobin was marginal, so there might be a chance on Thursday when we go back in for another count check that Sicily may need a transfusion. We'll just wait and see.

Sicily was sleeping in this morning and I was overjoyed at the idea of her doing so. I made the mistake of forgetting to get Elias a pair of socks, so he went back into his room, where Sicily was asleep in Corinthian's bed, to get himself a pair. I wasn't aware he had done that until I heard some yelling from Sicily and Elias came down the stairs a little upset saying, "All I did was kiss her on the forehead."

My first reaction was to get a little upset with him, but I immediately stopped myself and thought...he just kissed his sleeping little sister on her bald little forehead...how many times have I passed by her when she's been asleep and wanted to do that myself? How sweet was that of him? I told him that he is a very caring big brother, but next time maybe he could blow her a kiss instead. He agreed. He's not aware that it's better to sometimes "let sleeping dogs lie," when it comes to Sicily and sleep! In other words, she is not the most cheerful morning person! Waking her up, by accident or not, can stir up a little drama! That's why mommy gets excited when she actually sleeps in on those rare occasions!

I think she's tired as she is laying on the couch right now with her eyes closed. I'm going to attempt to tip-toe by her to work on laundry in the other room. And I promise not to kiss her on the forehead...as tempting as it may be! I'll practice what I preach and blow a kiss! ; )

Everyone have a good Monday!

Kerry
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Old 03-24-2009, 08:19 AM   #214
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Wow, praying for Sicily and praying that she has a good day today and that no one wakes her up even with a kiss. How sweet of big brother and mom handled that perfectly. So hard but so loving!

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Old 03-24-2009, 04:54 PM   #215
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TUESDAY, MARCH 24, 2009 06:32 PM, CDT

Good evening,

Nothing major to report. Sicily woke up this morning saying her head hurt, but that went away shortly after she ate her chocolate chip waffle breakfast. I worry that maybe her shots kicked in and her numbers might be too high, but she has done super the rest of the day. More energy than I know how to harness! We've all been battling the allergies a little, so it could be a symptom of that, as well.

We're getting ready to give her the last shot in this round here in the next fifteen minutes. She loves to celebrate the end...as short lived as it may be! More to come after the next hospital stay. We'll check her counts again on Thursday. Then we'll be inpatient a week from Thursday...and I'm not dreading it! Aren't you proud of me? It's still far enough away, but I'm working hard on the attitude change!

I have to share a quick little story about Corinthian. I love it when God throws instances like this in my life...so I can honestly laugh myself to tears, instead of always shedding tears of sorrow. Yesterday, in one of Corinthian's 7th grade classes (which will remain a secret), he sits in front of a girl who he "kindly" refers to as an "airhead." Apparently, everything she does makes him laugh.

Yesterday, she must have been on a roll as it was suggested by someone that she needed to write Corinthian's parents an apology letter for him losing so many brain cells on her account. Guess what? Corinthian hand delivered such a letter. I don't remember the last time I laughed that hard. Here is the letter, in it's exact form:

"Chrolins parents, I am very sorry that your child is losing Brain cells because of me. He sits in front of me in ? hour. and loses brain cells and go weak. I hope that he will succeed in life. Truly sorry..." I told Corinthian if he doesn't get a scholarship in five years, I'm going to call this young lady and ask her where her share of the tuition is. Corinthian wanted me to write that in a letter, but I thought better of it...how would I explain that to a teacher or parent? It was all in the name of fun.

Patrick and I tease Corinthian that this girl must have a crush on him for all the things she does. He denies it and remarks that she "truly is an airhead!" Out of the mouths of babes! Or at least thirteen year old boys! He said they just have a lot of fun joking back and forth. It's times like these that I am so thankful for...Sicily's life circumstances aren't affecting our other kids too much on a daily basis. They are able to be kids and laugh and have fun. That is such a blessing and I am very aware of that!

Well, the timer is going off...GCSF shot time! "Sicily..."

Kerry
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Old 03-25-2009, 10:54 AM   #216
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WEDNESDAY, MARCH 25, 2009 01:32 PM, CDT

Good afternoon,

Sicily is doing well. She seems to be feeling good. When she's happy, I'm happy!

She was playing with my hair this morning and posed a perplexing question that I really didn't have an answer that I could come up with to give her. She asked, "Why do we have hair?" Personally speaking, I could have honestly answered, "To drive mommy nuts every morning!" But that wouldn't be sufficient to a child who is lacking in hair to complain about.

So, why do we have hair? Sicily has come to the conclusion through her own experience that she can live just fine with out it! Good for her! Although on occasion she has said she wants her hair to grow back. I don't think we'd all look as cute as she does (and all the other children in her shoes) sans the frizzy, flat, curly, straight, poofy, brown, black, blonde, dishwater, auburn, red, gray, white, or salt and pepper dos! Does anyone have a reasonable answer I can give her? Just trying to appease a curious mind!

Kerry
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Old 03-25-2009, 11:32 AM   #217
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Talking why we have hair!

I found this article from Science World. Dr. Perry describes his thoughts or findings about why we have hair!

Personally, I think all mammals have hair for protection. From bugs, the elements, ect.

Anyhow, here's the article!

Why do we have body hair?

Science World , Sept 18, 2000 by Bruce Perry

WE ANSWERED! EXPERT DR. BRUCE PERRY REVEALS THE SHOCKING TRUTH BEHIND THE MYSTERIES OF SCIENCE.


The hair on our bodies is a characteristic of mammals (animals that nurse their young with milk). Hair plays many important roles--warmth and protection from germs for example. Hair also helps reduce friction--and thereby irritation--in skin-to-skin contact, like under your arms.


The most fascinating role of body hair, however, is to assist olfactory (relating to smell) communication. One of the most important forms of human-to-human communication is through scent. Your body releases chemicals called pheromones that create a unique scent to you. Newborn babies can pick out their mother's blouse from a group of blouses based on scent alone. A mother's pheromones can calm a baby even when mom is absent.


Body hair retains your unique chemical signature, allowing others to sense and respond to you. When afraid or aroused, your pheromones change. Most of us know that dogs can "smell" fear--and it's likely that humans can too.


Manufacturers spend billions of dollars a year to influence the ways we "smell" through perfumes, soaps, and deodorants--trying to make people more attractive to each other. Could you be drowning out some of your most powerful yet natural chemical "attractants"? The clean, natural scent bristling on your body hair is likely to contain the attractants people seek in perfumed potions.


DR. BRUCE PERRY is the Thomas Trammell Research Professor of child psychiatry at Baylor College of Medicine, and chief of psychiatry at Texas Children's Hospital in Houston. He has been consulted on many high-profile incidents involving traumatized children, including the Oklahoma City bombing and the Columbine, Colorado, school shootings.
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Old 03-26-2009, 06:55 PM   #218
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A sweet bump for a sweet little angel face
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Old 03-27-2009, 08:14 PM   #219
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FRIDAY, MARCH 27, 2009 12:22 PM, CDT

Hello all,

I don't have a lot to report today. Yesterday I took Sicily to the clinic for a CBC but don't have any idea what her numbers are as we had a "substitute" nurse who I don't think knew how to calculate them. Sicily's hemoglobin was at 8.2, so she did not need a transfusion, luckily. Who knows when next Thursday rolls around if she will or not.

Patrick wanted me to look into seeing if he could be her blood donor if and when she needs it, but it doesn't sound like they make it very easy for him to do, so I guess we'll let go of the idea. He has been a loyal blood donor for years and years, and will continue to do so. His blood will help others and other's blood will help his daughter.

Sicily is feeling good today. She's very excited that today is Friday, not that she can keep track of the days of the week, but she does know that it means her daddy and sister and brothers will be home to play with her for a couple of days!

Corinthian will be playing in a piano competition tomorrow that could qualify him for state. I'm so proud of him for continuing his playing. This has been the only thing he's been able to do this year. He's excited about eighth grade next year and has big plans. We just received a letter from the school saying he was chosen for National Junior Honor Society. He wants to work on the yearbook staff and run track, along with maybe be active in drama. He's pretty well rounded and I pray he is able to do all that he wants to do. I think this year did take it's toll on him as we weren't able to take on too many extra things. Whatever our circumstances next year, we will just try harder for him and the other kids! We are so proud of them for everything.

Well, it's just started to storm a little here so I'd better hurry up before the electricity blinks off! Thank you all for continuing to be there for us. We still need you!

By the way, I'm very excited that CaringBridge will be making some big changes tomorrow! You'll hear from me and maybe "see" more of us when the enhancements are complete! ; )

Love,
Kerry
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Old 03-30-2009, 08:59 AM   #220
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Latest update from Sicily's mom --

Monday, March 30, 2009 10:32 AM, CDT

Good Monday morning all,

We had a great weekend! But before I go into that, those who have been following Esther's site already know that she is truly a miracle. Her kidneys began to function again, and there is still hope she may be able to go through with the trial they flew all the way to Philadelphia to seek. All I can say is thank you all for adding her and her family to your prayers. Her battle in not over and she is definitely not out of the woods by any means, but still, "WOW!" Her missionary work on earth is not done yet!

I'm hoping Sicily and I will get to see her this Thursday when we are inpatient for chemo. I don't know if my emotions will hold up, but who cares! I've already cried a lot over Esther...I can cry some more. But this time, I think my tears will be tears of joy as I didn't think we'd ever get to see her beautiful little face again!

As for our family update, we are all doing really good. I mean, we really are. That is nothing short of a blessing as well! We had a snow storm on Saturday and all Sicily could say was, "I'm so excited...I'm so excited!" It was a very pretty sight to watch the huge white flakes cover our green trees, freshly planted strawberry plants and rose bushes! Oh well, if they are as resilient as our daughter, they will perk back up at first sunlight.

The kids, including the biggest kid in the family, Daddy, had fun playing outside. We are about the only ones left in the neighborhood with snow only because Patrick and Elias rolled the snow up like carpet into huge "snow bales" and made forts out of them. Other yards around look clean and pristine with their white covered yards...where's the fun in that? But not us...our yard looks like a tractor pull rally...total disaster. And I have pictures to prove the happiness and fun it provided!

Corinthian's only worry was that school might get canceled. There was no threat of that as the snow was very wet and mostly absorbed into the thirsty soil by last night. On Saturday afternoon, Corinthian and I had to get out and drive in the white mess to the Oklahoma Music Teachers Association audition. He was playing a piano solo to qualify him for State. He did outstanding and received a 1+, which not only allows him to go to the State competition, but he will play in a concert of other student who also received a 1+. He was very excited and proud of himself, as he should be. We even tried to call his former piano teacher in Wellington on our way home to share the news, but couldn't reach her. We will go to Oklahoma City in mid-May for the State competition.

Everyone else is doing good. Isabella is gearing up for all her "end of elementary" activities as she will be graduating from 5th grade. It's very sweet to see how excited she is about things! Elias still has all of his bones intact...for the time being. After watching him climb on top of the snow piles the past two days, I had my doubts. I just bit my lip,said a little prayer, and let him be the boy that he is.

Sicily is counting down the days now until her birthday party scheduled for April 11th when the Make A Wish Foundation grants her wish of playground equipment. She will be in heaven when it is built. I may never get her to come inside. I may be delivering her meals outside and taking her a pillow and blanket for naps. I can't wait to see the continual smile on her sweet face. She will be so happy.

Well, speaking of little miss princess, she fell asleep on the couch so I need to run around the house like a maniac and try to get something accomplished. Please continue to pray for Hollyn and Esther and all of our dear little people battling the cancer beast. Please pray that a cure will be found soon so your child, grandchild, niece, nephew, cousin, or friend doesn't have to live their childhood trying to save their childhood!

Love to you all and thanks for everything! God Bless!

Almost forgot...I love what CaringBridge has done with their recent update! I finally can add more photos, and for those who know me, know that I LOVE photos! So check out the new ones I recently added.

Kerry
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Old 03-31-2009, 07:35 PM   #221
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A sweet bump for sweet Sicily.
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Old 04-01-2009, 12:03 PM   #222
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Sicily and her mom are packing once again for another hospital stay to get her next round of chemo -- thanks for prayers.
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Old 04-01-2009, 12:10 PM   #223
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I will pray for Sicily and the doctors. So things go well.
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Old 04-01-2009, 04:02 PM   #224
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Wednesday, April 1, 2009 6:27 PM, CDT

Hello all,

Sorry for not posting much lately...it's been a pretty busy household around here. Sicily and I will be off to the hospital tomorrow morning around 8:30 for a five day chemo treatment. I've been trying to pack and get organized around the house, but I seem to be waiting until the last minute and procrastinating a bit too much. Just a lot of other things going on.

I took the older three kids to a new pediatrician yesterday morning...can I just say, "Loved her!!!" I'm so glad to have found her. She came highly recommended by others in the medical field. Corinthian was very pleased with her and we all liked her "bedside manner!" The kids all needed an immunization booster shot, and Corinthian and Isabella were due a tetanus, as well...OUCH! And they are still complaining about that one. Arms are sore and we've been on a routine of Motrin. I even had to assist Isabella with her pj's as her arm hurt to raise too high. I remember how much those particular shots hurt. I'm probably past due myself for one. Yikes!

Patrick stayed home with Sicily as there was no need to expose her to the public with a treatment coming up. She will get to meet our new doc later in April when I take her in for her four-year-old check-up. Speaking of her birthday, it will be here before we know it and the Make A Wish Foundation called today and scheduled her play equipment for installation next Tuesday. She is already soooo excited, as mommy is, too. We will hopefully get to come home Monday evening if all goes well in the hospital, and she will get to watch her wish come true on Tuesday. I will be sure to video tape it and take lots of pictures. She will be one very happy little person!

I'd better get back to pack'in before I get too tired. One last thing, I accompanied Corinthian last night to his candle light induction ceremony for the National Junior Honor Society. We're so proud of him. I sat there almost in disbelief as I realized that our son is really growing up fast. Last night he's a 7th grade Jr. Honor Society member, I'm afraid I'll blink and he'll be graduating from high school. I don't want life to fly by...I want to enjoy each and every detail and experience I can. I may look back someday and actually miss Sicily and my trips to the hospital and being around some of the familiar faces we've come accustom to while there. This is a chapter of our lives...it may not be the easiest chapter to live or one in which we would want to repeat, but it is still our lives and the only one we all six will ever have.

I don't want our kids to be "scarred" by this whole experience. I have hopes they, too, as others have, will come away from this with a new appreciation of how precious life really is and that even under dire circumstances, it's up to us to make the most of it! We are responsible for our own happiness. Even cancer has no right to take it away from us!

Sicily is still a bubbly, happy, goofy little girl that I thank God everyday that He chose me to be her mom! I wish I was better at knowing or understanding what He wants me to do with all that I am learning and experiencing, but in time I'm sure I'll figure it out! Or He may have to hit me over the head with it! I hope not...I hope I'm not that ignorant! ; )

I'll report more tomorrow once we get to the hospital and get settled in. I can never say or express enough how much it means to have so many wonderful caring people walk with us, talk with us, and sometimes carry us on this journey! We can't voice enough gratitude! Everyone have a great evening!

Kerry
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Old 04-02-2009, 06:41 AM   #225
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Default Praying for Sicily!

Sicily and Kerry continue to be in my thoughts and prayers!
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Old 04-02-2009, 06:52 AM   #226
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Quote:
Originally Posted by janiekay View Post
Sicily and Kerry continue to be in my thoughts and prayers!
Thank you so much!!
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Old 04-03-2009, 07:59 PM   #227
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An evening bump for sweet Sicily
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Old 04-05-2009, 01:55 AM   #228
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Thursday, April 2, 2009 9:58 PM, CDT

Hello,

It's been a good day for us. Sicily didn't get her chemo started until around 6:00 just because we had to wait for her urine to become concentrated enough. When we first got to our room, we went to check to see if Esther was in her room, but she wasn't. Her hospital room was adorned with pictures, stuffed ponies and butterflies made of coffee filters dyed with markers and water hung by paper clips and strings from the ceiling. We stood and looked at it in awe for awhile. I could feel the knot in my chest tighten as I did not think we would get to see this precious little Christian soldier again!

Sicily and I continued on our walk and returned to our room. Not too long later, we saw Esther get wheeled towards her room, and her mom stopped in to chat with us for a bit. Sicily and I were finishing up our lunch and then decided that Esther's room was missing something. So she and I went downstairs to the gift shop and bought a huge butterfly balloon. It was a sweet sight to see Sicily with her mouth and nose covered in a protective little surgical mask carrying this gigantic balloon back through the lobby of the hospital to the elevator and onto its final destination...her friend, Esther. We went to her room and she handed it to Esther without saying a single word, but Esther politely and sweetly thanked her. Three of Esther's four younger siblings were there in the room with her (they have five beautiful children under the age of six) and one of her younger brothers decided that the big butterfly balloon could be the mommy to all the other little butterflies flying around the room! I agreed with him that that was a good idea!

Esther's mom gave Sicily and I some extra coffee filters and explained how they had made them, so once we returned to our room, we made some butterflies of our own, as well. I was too chicken to stand on the bed or chair in an attempt to hang them from the ceiling, so we just taped them on the walls and door.

Esther is still in a lot of pain, and it's still a very agonizing waiting game to see if they will be able to get her into the trial that is just about their last hope. But "Hope" is one thing this family exemplifies more than any other person or being I have ever been around with in my life. I want to be near them as it's a contagious feeling. They won't give up, and neither will little Esther. Before we settled in for the night, we got to take a walk once around the third floor together with Esther and her mom. I feel like I can honestly say I walked with an Angel of God this evening. I have tears rolling down my cheeks as I type this as I'm feeling very emotional and overwhelmed with just the experience of being around her again, even for just a short while. I have never been around a child with such strong faith and acceptance for her life's circumstances. She is beyond words that can explain...for once I'm almost speechless! I was able to snap a quick photo of these two beautiful brave little souls. And I also told Esther's mom that if she was feeling okay Friday evening, that I would like to bring Elias down to meet her when Patrick comes. I explained how emotional he became over learning about her and that it would mean a great deal for him to meet her in person. So I pray she will be up for that!

Sicily took a marathon nap today of over three hours. Our priest, Father Joe, came and visited with us for awhile (as she snoozed) and I really enjoyed his company! Again, I'm really feeling full of emotion and should probably get some sleep as I will need to be up a few times with Sicily during the night. But I just needed to jump on here while the thoughts were freely flowing or I would never be able to get to sleep. I'll update more tomorrow. Sicily is asleep now so I'd better join her. The power of prayer is an amazing thing...I know because I walked with a living answer around a Children's Hospital this evening! God Bless you all!

Kerry
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Old 04-05-2009, 02:00 AM   #229
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Friday, April 3, 2009 1:56 PM, CDT

TGIF!

Things are going well for Sicily, even though we don't kid ourselves that complications could arise at any time, we are blessed that they haven't so far on this leg of the journey. There are so many reminders, some subtle, others point blank about the type of situation we are in. Just the fact that we are spending every third week in the hospital is reminder enough. Again, we are one of the lucky ones with how things have been going for us.

Just as I am typing this I can hear out in the hallway the hospital emergency call for a code blue in PICU. A chill runs up my spine and goosebumps pop up on my forearms with the thought of what could be happening there, and about the families dealing with this emergency. It is a hard reality and I am always in full scale admiration for the men and women who work in the medical field. Just imagine how much I am affected by someone like Esther...I always wonder how they deal with this. It can't all be in a days work!

Sicily and I passed by Esther's room earlier while we were on a walk but didn't stop in. There is a helpless feeling, even for us who are just doors down a hallway. But again, I watch and I observe and I marvel at what is around us. It's amazing how much some people can endure. I don't think I could hold it all together as well as they do. But there must be some reason God is allowing me to be a witness to this. I am one of those people who easily carries and gets emotional about others experiences.

Right now, along with Esther and Hollyn, I am thinking about and praying for another brave little soul in California, a five year old boy named Pablo. This very brave little dude is a fellow Wilm's warrior who is battling the same unlucky bi-lateral with unfavorable histology diagnosis as Sicily. He just recently finished his last chemo treatment, but is currently in the PICU at the Children's Hospital in LA fighting for his life due to an infection. It's just so heartbreaking what these kids have to go through. I know I ask it a lot, but please add Pablo to our ever growing list of kiddos who need our prayers.

It's times like this that I wish we lived in a smaller world, at least geographically. I want to meet these other kids and and their families. I want to share our stories and our desires to figure out ways to end this tragedy! There are a lot of folks in the support group I'm involved with online who are traveling to Washington DC in June for an event called "Reach the Day" sponsored by Curesearch. Patrick and I can't go this year, but have hopes of being able to attend in 2010. I don't know a whole lot about it, but it could be a starting point for our involvement in the political arena concerning childhood cancer.

I'm sorry I'm rambling so much today. Can you tell Sicily is napping and I am tired of sitting and thinking these thoughts to myself? ; ) I truly am doing good and have a lot of stuff going on.

I will be taking part in a radio broadcast (pre-taped, thankfully) that will be affiliated with the Children's Miracle Network. This hospital is the recipient to all donations and funds raised through the network in our area and they will host a radio-thon in late June. I will be one of the parents interviewed about our experiences here and our life situation. Again, I'm excited to be a part of anything that can bring awareness to our cause. I'm not comfortable in the spot light, but all I have to do is look into by daughter's big brown eyes and I will do whatever it takes! Plus, I truly love this hospital and can go on the record honestly and say it has been a very comforting place for us to be!

Okay, I've rambled enough for today. Enjoy the weekend and enjoy the little things of life around you! I will close with one of my new favorite quotes, "Whether we win or lose, give God the glory!" Esther Joy Travis

Kerry
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Old 04-05-2009, 02:06 AM   #230
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Saturday, April 4, 2009 4:34 PM, CDT

Hello,

I don't usually update too much on the weekends, but I just wanted to jump on here as I'm still full of emotion for a number of reasons. Sicily is doing well, handling her treatments as good as we could hope for. Daddy is on hospital duty for the weekend, but the kids and I ran up to visit them anyway.

I had a special delivery to make that I knew she would want to have. It was an early birthday gift from our special pal, Phyllis the dog. And boy, is it something. It's a HUGE, precious, look alike stuffed lab that could easily be mistaken for Phyllis' twin. Sicily was so excited! Just as she finished opening her gift, I was going to take Elias down the hall to meet Esther as they are going home today. I opened the door and to my surprise, there was Esther and her mom. She was being wheeled around in a wheel chair handing out Easter eggs to other patients. That's Esther for ya! Please continue the prayers for her...the latest news isn't good. I just love her and her family. Amazing people! We've invited them to Sicily's birthday party next Saturday and they may try to come if Esther feels good enough.

I go back to what I've said before...God puts people in our paths for reasons! Like our relationship with Glenda Jackson and her dog, Phyllis. Glenda feels helpless, as I know many do, in the realm of childhood cancer. So she knits, and as she knits she prays with Phyllis by her side. We received a box of beautiful, colorful knitted berets (thirteen total) from Glenda that she made for Sicily to share with others. We gave one to Esther this morning, the same color green as one that Sicily decided to keep, as well. We are the grateful benefactors to the thoughtful generosity of such people. It is an amazing thing and we will never be able to thank everyone enough!

There is always something that can be done for others going through what we are going through, in big ways and in small. Sometimes it's the smallest gestures that mean the most! A lady made and brought a bunch of soft little fleece pillows to the hospital to give to these special little patients. Sicily has been sleeping with hers since receiving it Thursday morning. We were visited yesterday by a troop of little Girl Scout Brownies that had made colorful flowers out of tissue paper and handmade Easter cards. Sicily carried hers around on a walk after she received them. I offered to carry them for her, but she insisted...they were special to her.

On one of our walks yesterday afternoon, we passed by a room with the door wide open. A teenage boy was casually propped up on the couch with his ipod plugged in as he was reading a book. He wasn't a patient...he appeared to be a visitor though the room was absent of any other people at the time. I could tell each time Sicily and I passed the room, he would look up at us. By about the third or forth passing, I heard him ask, "How old is she?" We stopped and turned around and I answered, "she will be four in a couple of weeks." Without saying another word, he shook his head as if to say, "What a shame" and turned back to his book. It was one of those surreal moments. A teenage boy, probably fifteen or sixteen years old, pondering what was before him. He didn't have to say anything to understand the magnitude of the sight. It still made me smile as we continued down the hall. That kid could have easily ignored us and not shown any amount of concern, but I can still visualize his shaking head, and I respond internally to myself with, "Ya, I know!" Maybe the sight of Sicily will stay with him, and maybe it will inspire him in some way or another someday. All the biggest trees in the world started out as little seeds themselves at one time. I'm hoping to plant seeds all over the place so I can grow a forest of awareness for pediatric cancer. I know that may sound corny, but if you were walking in my shoes and seeing and feeling what I am seeing and feeling... you'd become an advocate, too! Love to you all and thank you for continuing all the support and prayers!

Kerry
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Old 04-05-2009, 06:39 PM   #231
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Sunday, April 5, 2009 7:19 PM, CDT

Good Sunday evening,

Some days my thinking cap doesn't work..I can't come up with anything meaningful or creative in my mind to help me through a situation or circumstance. Other days, my mind won't quit and I can't stop it from producing constant thoughts...thoughts that flow faster than the waterfalls at Niagara that cascade over the edge. It's days like that (today, for instance) when I don't seem to get much done, physically productively speaking, as I my mind is so active. I have yet to find an on/off switch for it...someone forgot to wire it with a control panel. So that is why some journal entries are strong in meaning and others are just informational. I try to write both when I can.

I use this CaringBridge site for more than just a venue to keep everyone up to date on Sicily's journey, it's my megaphone, soap box, therapy session, and record keeping book all rolled up in one. Some day, when Sicily is older, she will be able to read every word that is written and know how she was cared for by many, many people. I also hope she can see how this was a journey of faith for all involved. I've come to the realization that having faith takes work and effort. To some lucky few it comes easily and naturally...they were born with the ability to have it, share it, spread it, keep it and live each and every day by it. They truthfully "walk by faith and not by sight!"

Others, faith is a day to day work in progress. Some days it can be strong and conquering, and on other days it's meek and wavering. To be completely honest, I fit into the latter category. I wish I was the former, but faith is something I have to work at. But I do work at it! I also believe that having faith is a decision that has to be made...I choose to have faith. Some people walk around expecting that an apple will fall from a tree, hit them on the head, and "whola"...they now have faith. That may happen to some, as well, but for many of us, faith is work to have and to keep. And knowing that I have to work at it day by day keeps me aware of my personal fluctuations. Those days when my faith is higher than a mountain top is when I need to share it more, and on those days when I feel lower than the ground the ants walk on is when I need to ask others to share theirs with me. Isn't that how life is in general? Those who have, should give, and those who need, should ask. And we can't be so narrow minded to only surround ourselves with those whose faith is unabiding. We need to be around others whose faith is non-existent so that they, too, may learn about faith and what it can do for them by how it has helped and sustained us.

Case in point, spending what little time I did around the Travis family has been humbling to me. This is a family that serves as missionaries to God. They've traveled to India and plan to return soon, hopefully with Esther. They will return, non-the-less, however Esther's story plays out. Being around them has made my faith barometer rise...like I said before, it's contagious. But I also recently watched, from the outside and at a distance, as one mother's faith dwindled at the loss of her precious daughter. It hurt to see and feel her pain and frustration...but also made me pose the same baffling questions to God as she did..."WHY? HOW COULD HE?" But that is when I've learned that by surrounding myself with others whose faith is intact, they will carry me through the times when the questions arise.

Just like the "Footprints in the sand" poem. When there was only one set of prints was when we were being carried. And that's okay to need to be carried from time to time, as long as we sometimes are the ones who are the carriers, as well! I truly think that God doesn't expect us to be straight arrows when it comes to our faith relationships. He gives us perilous situations that are meant to test our faith, and by being tested, we learn and grow in our faith relationship with Him. Some tests are harder than others...some are down right unbearable. But like little Esther says, "Win or lose, give God the glory!" This out of the mouth of a six year old girl battling a very painful and draining war with cancer. Amazing. I truly see the face of Jesus in this little girl. I believe she was sent to earth as one of God's angels to teach each and every one of us a lesson in faith. She is teaching...we are learning. Even those who have never met her and never will, are learning incredible lessons from her. Again, amazing...that's about the only word I can come up with each time I think of her.

Webster's definition of the word amaze - to fill with wonder or surprise; to astonish. Enough said! So, if you're sitting on a mountain top of faith right now, go "amaze" someone...if you are crouched down in the soil sinking with each burden that is about to bury you... "ask, and it shall be given to you; seek, and you shall find; knock, and it shall be opened to you. For everyone who asks, receives; and he who seeks, finds; and to him who knocks, it shall be opened." Luke 11:9-10

With ALL that being said, (sorry for the rambling) Sicily is doing great. We have so many people ask us how we get through all of this, and that's why I sat down to explain how, personally, I can do this. Sicily still manages to make all of us around her who are watching her and caring for her smile with pride and satisfaction at how well she handles her situation! As so many kiddos do. I will sign off for now. My mind is actually worn out, surprising, huh? Goodnight and God bless!

Kerry
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Old 04-06-2009, 03:03 PM   #232
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Monday, April 6, 2009 4:38 PM, CDT

Afternoon all,

We're wrapping things up on this visit. Sicily and I are just waiting for her last dose of Mesna...the medicine that helps protect the lining of her bladder from the chemo drugs. We should hopefully be home in time for a late dinner. Her hemoglobin is dropping so she may need a transfusion this Thursday when we are in the clinic for a CBC. We had the choice of getting one today, but she's still hovering above an 8, so we'll wait and hope it goes back up.

Sicily fell asleep in the reclining chair and woke up a little on the grumpy side. She has no concept of time, so telling her we may get to leave in an hour, means very little to her.

I spent some of the time she was napping stringing beads. We just started doing the "Beads of Courage" program. I had heard about it not that long ago. Our child life specialist brought us the information on it and I sat down last night and began figuring out what and how many Sicily needed to get caught up. Thanks to all my detailed (and windy) journal entries on CaringBridge, I think I came pretty close to being accurate!

The way the program works is Sicily gets a bead for every event or occurrence she goes through on her cancer journey. White beads are for chemo, black beads are for "pokes," yellow for inpatient admissions, blue for clinic visits, and so on. Some beads are bigger and more symbolic, like the square heart which is for transfer to PICU...Sicily has two. The beads are then strung together. They symbolize courage and they honor the milestones these kids achieve on their journeys. I filled three strings full with over two hundred and eighty beads, thus far. It's such a neat thing and I am so glad Sicily is able to take part in it!

Well I'd better go. She's begging for a walk and I have all our luggage packed and ready to hit the road! Please continue to prayer for all the precious kiddos...please never stop!!!

Kerry
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Old 04-07-2009, 09:48 AM   #233
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A sweet bump for Sicily
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Old 04-07-2009, 10:01 AM   #234
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Tuesday, April 7, 2009 9:10 AM, CDT

Good morning,

Sicily just let out a big SQUEAL...Make-A-Wish just called and they are one their way to our house as we speak to build her play ground equipment. She is beside herself. I'll update more later.

Oh, Happy Day!

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Old 04-07-2009, 05:40 PM   #235
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Make A Wish is building a playground for Sicily in her backyard.

Tuesday, April 7, 2009 8:09 PM, CDT

Evening all,

I was only able to add a few of the dozens of photos I took today to this site. Most of my pictures still have too much MB for CaringBridge, so the rest I'll just have to put on facebook. Sicily had an absolutely wonderful day! She is one happy little girl, to say the least.

Out of curiosity, I asked our Make-A-Wish representative, Tracey, a little bit of background about Sicily's grant being wished. She said that a church in Supulpa, OK decided to have a spaghetti dinner to raise money for the Foundation. It's something she said they've decided to do every few months. Sicily's playground equipment was purchased with the funds raised through that church. It is a neat feeling knowing that there is a somewhat local connection. I was really happy to hear that and plan on sending the church some pictures so they can see what their generosity has spawned!

Well, it's been a busy day, so I'm going to turn in early tonight...maybe...I always find something to do or some good show to watch that will keep me awake later than I want! ; )

Kerry
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Old 04-07-2009, 08:20 PM   #236
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prayers for health and a beautiful playground for Sicily!!!!
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Old 04-08-2009, 06:56 PM   #237
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Wednesday, April 8, 2009 9:31 PM, CDT

Evening...and almost "goodnight,"

Just a quick note...Sicily has a clinic visit in the morning (Thursday) for a CBC. I imagine if her hemoglobin hasn't made an attempt to rise since Monday, she'll be getting a transfusion. But that's okay...whatever she needs!

It was beautiful outside today. The kids spent as much of the evening out on the play equipment as they could. It has turned into a magnet for wasps, so we'll need to figure out a solution for that pesky problem! I think we have a chance of rain tomorrow and on Friday. Saturday is forecast to be bright, sunny and beautiful...the perfect day to celebrate an awesome little gal. Easter Sunday brings another chance of rain. That's springtime weather for ya!

Everyone have a good day tomorrow and I'll journal our happenings if they amount to anything. God Bless!

Kerry
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Old 04-09-2009, 02:56 AM   #238
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Uplifting Sicily this morning and I was so happy to read about the new playground set for her may she thoroughly enjoy it!

Hugs,
Michele
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Old 04-09-2009, 10:58 AM   #239
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Thursday, April 9, 2009 12:36 PM, CDT

Hello all,

Sicily is doing good...no transfusion needed today. Her hemoglobin is the same level today as it was last Monday. Her ANC counts were around 12,000...yes, way too high. That is just showing that the bottom is about ready to drop out. Her counts will nose dive here shortly and her Neupogen shots (which if I haven't explained before are called GCSF - granulocyte colony stimulating factor) will hopefully start their job and bring her white counts up. When her body starts to focus it's energy on raising the white counts, sometimes other things suffer...like her hemoglobin. So, come next Tuesday when we go to the clinic for a CBC, she may need a transfusion then.

I'm past the thought of that being a "negative" thing. I recently came in contact via email a very sweet woman who has been a loyal blood donor for many years, basically since she was old enough to start donating. She said she has donated over thirteen gallons of blood in her lifetime, as it has always been "the right thing to do." Now that she has seen Sicily and knows this little gal is in need of blood from time to time, she can put a face and a name with the reason of why she is doing it. I've come to the realization that in there lies some sense of comfort for me...a strangers blood running through my daughters veins, helping to sustain her life! Someone, somewhere shared something of themselves to help someone they will most likely never meet! I get emotional just thinking of how so many people in so many different ways have helped us along on this journey.

Stories like the one I just shared are truly moving to me. I have others to share, as well, but I will spread them out a little. I have emailed back and forth to several people lately that I have recently realized and come to a sort of an understanding about Sicily's cancer...it is a "blessing in disguise!" The disease of cancer, itself, is not the blessing. It's the acts of kindness and outpouring of compassion that are the blessings. God doesn't "do this" or "give that" to us for any specific reasons. These types of life circumstances are not meant to be punishments or penalties for anything! They are what they are...circumstances. The key to surviving them is to look deep into what can come from them. I am amazed each and every day by the number of people, young and old, local and geographically distant who are feeling the shock waves from Sicily's illness and are moved to act in some way! If that is not a blessing, hidden behind the word "cancer"...I don't know what is! Everyone have a good day.

Kerry
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Old 04-13-2009, 07:29 AM   #240
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Monday, April 13, 2009 8:51 AM, CDT

Good Monday morning,

Please forgive me for not writing in three days. We have had three days of busy, fun, normal as can be expected living!

I want to share an experience from last Thursday. When Sicily was inpatient last weekend, our priest, Father Joe, came to visit and while there he asked if Sicily would be able to assist in carrying the Oil of the Sick for presentation at Holy Thursday mass. I thought it would be an honor and told him as long as Sicily was feeling okay, we'd be there. He said she would be escorting another parishioner who is currently battling breast cancer.

I need to explain a little more background before continuing on with this story so you can understand the true impact. We had just moved to Broken Arrow in June and began attending St. Benedict's church the second weekend we were here. I'll never forget trying to dig out church clothes and shoes amongst the many yet to be unpacked boxes. But it was very important to me for us to find a church home as soon as possible. The church is were I hope to meet new friends and find a family away from our own. This church is a large church, in terms of members, and I knew it might take me awhile to meet and get involved, but that was a goal.

Currently, due to our circumstance, I still don't know very many people and I haven't had a chance to get involved, but hope to soon! After several Sundays, Patrick and I decided to check out the nursery for Sicily, as she has always been quite a handful during mass. Most services usually ended with Patrick and Sicily waiting for the rest of us outside or already buckled up in the mini van. Frustrations usually ran high! So despite experiencing my maternal feelings of abandonment, we began to leave Sicily in the care of some very nice women. She had only been in the nursery for a little over a month when our lives turned up side down on that late August weekend.

After Sicily was diagnosed on Friday, August 22nd, my sister came from Oklahoma City to take our older three kids home with her for the weekend so Patrick and I could process what was going on and have some special bonding time with Sicily. Father Joe anointed Sicily with the Oil of the Sick in our home Saturday evening, and on Sunday morning, Patrick and I took our little pocketful of sunshine to church. We decided to have her stay with us during mass instead of taking her to the nursery, but she wanted to go say hi to her friends...the women who worked the nursery. We never learned names but faces were becoming familiar, especially the one of the woman who always greeted us at the nursery door. She once again was there as I held Sicily in my arms and explained through tears that she wouldn't be visiting the nursery for awhile as she was just diagnosed with cancer. This sweet lady shed tears right along with me. I will never forget the look in her face!

Fast forward to Thursday evening. Sicily and I arrived at church early so I could meet the lady she would be escorting. We no sooner walked in the door, when my eyes met the gentle eyes of a familiar face and an excited wave. There, with her bald head wrapped in a scarf, was our nursery friend...who by the way does actually have a name...Miss Kayla - the St. Benedict's nursery director. My heart was overwhelmed. Of all people...I couldn't believe she was the one. We stood and talked about her cancer for a short spell, and she told me she was diagnosed in September, shortly after Sicily. I confidently left Sicily in her care as they prepared for their walk. I sat in the last pew on the very end so Miss Kayla could easily return Sicily to me when they were done. The minute I knelt down the tears began to flow.

When the service began, I turned to see Miss Kayla, with the Oil of the Sick held in her left hand, and the hand of my daughter cradled in her right. And to my surprise, she had removed the scarf she was wearing that had concealed her hairless head. They were the first to walk down the isle in front of the whole congregation, and stood proudly for all to see for about ten minutes. When Miss Kayla brought Sicily back to me, she leaned over to hug me and whispered in my ear, "Sicily wanted to know why I was wearing that on my head." My tears continued. Even though I have only been around this special woman for a brief time in my life , I feel a very strong bond with her.

I held Sicily through the service as she rested her tired head on my shoulder for only about half an hour. She was tired so we left early, though I felt I could have spent the whole night there. The feelings of peace, comfort, acceptance, love and compassion were surrounding me as all eyes in the church had focused on those two beautiful, brave beings. I know where we belong!

So, I could have journaled about this on Thursday, but I didn't think I could see good enough through me tear swollen eyes and I decided I needed a little time to relish the moment! I also found out that this was the first time the oils had been carried down on Holy Thursday this way at this church for very long time. Again, it was such an honor. Sicily may not understand the impact, but mommy sure does!

Good Friday was spent getting the house ready for Sicily's birthday celebration on Saturday and baking one hundred and twenty-two cupcakes. I like to make a special cake for my kiddos for their birthdays and it usually takes me a whole day to do it. I asked Sicily (in a very excited voice) if she would like mommy to make a whole bunch of beautiful, bright and colorful cupcakes that we could put on a cascading stand...or (in a low, dull voice) did she just want an old cake? ; ) Guess what she chose? Cupcakes are still time consuming but very low stress. I'm all about minimizing stress these days!

Her party on Saturday was a huge and wonderful success thanks to family, many who traveled long distances from Kansas, Texas and other parts of Oklahoma, and some special young friends. She had a blast, and we can't thank enough all involved for making her feel so special! What a wonderful memory. We spent a rainy Easter Sunday at home after attending church at noon. But it was nice. We had time to wind down a bit from all the previous days excitement.

Sicily has an appointment tomorrow morning for a CBC. I'll journal how she's doing. Her birthday "week" will continue as her actual birthday is on Wednesday. We have a special surprise saved for her then. Everyone have a good "beginning of the week" Monday! Thank you for continuing the support. We wouldn't be where we are without all of you helping us along! God Bless!
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