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Old 10-02-2009, 06:29 PM   #361
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Friday, October 2, 2009 2:43 PM, CDT

Good Friday afternoon,

Sicily is great. She is happy and full of energy and life. I've decided for the next week I will wear my "rose colored glasses" and only see the good and beautiful things in our daily lives. Whatever the news we receive next Friday, we can handle it. We are blessed in sooooo many ways and I never want to take any of that for granted.

I sat in a meeting yesterday morning with the Assistant Preschool Director and several other preschool mom's from Sicily's school to plan a Fall Festival. I committed myself to the decorating committee (big surprise there, I know) and whatever else may come up. All the while I am doing this, in the back of my mind the thought, "Will Sicily be able to continue going to school if a recurrence is discovered next week?" I hate when my mind travels in that direction, but I still try to do my best to forge ahead with life. I refuse to live my life on the back burner.

I've said it once and I'll say it again and again...no one is guaranteed a tomorrow. No one! Only God knows who is living on borrowed time! We can't live our lives in fear always worrying about the unknown. That would be a safe way to live, but where is the quality of life...where is the enjoyment? I waiver sometimes between wanting to wrap ourselves in bubble wrap and wanting to grab the bull by the horns. I'm shooting for somewhere in the middle.

This past year has changed the way we think and the way we act. All of which, I think, have been extremely positive changes. Do I still wish this never happened to us? Of course, but it is being chalked up to something we had and still have no control over. And, by George, we've come through it and are stronger, better human beings because of it! I say that directly from my heart. My daughter's cancer brought out the best in me. And it brought out the best in so many other people around us!

I'm still scared to death about next Friday and her scans. But we, Sicily really, beat the beast once...she could beat it again if she had to. I still couldn't fathom the thought of cancer wanting to re-enter her ornery little body! ; ) She has more fight and gusto in her little forty-two pound frame than any professional wrestler. She's still my hero!

This morning, Sicily and I went to cash in a Build-A-Bear gift certificate that was given to her. The Build-A-Bear toys she has have meant a great deal to her. The first one was made the weekend after her diagnosis by her siblings and cousins in OKC and was appropriately named, "Hope." Hope sat on a gurney outside the operating room while Sicily had her first little surgery to have her port placement. Then, Patrick's co-workers gave her "Faith" bear and she was personally delivered to the hospital in Oklahoma City by Patrick's boss and a co-worker(from Broken Arrow) right after her BIG surgery. Sicily received "Love" from a stranger while receiving chemo inpatient at the Children's Hospital here in Tulsa.

Today, she got to go to Build-A-Bear for the first time to pick out and stuff the next member of her entourage, aptly named, "Bravery!" Her new friend has not left her side all afternoon. The brown leopard print kitty cat even sat buckled into the shopping cart Sicily insisted on pushing around Hobby Lobby.

The looks she receives now are for a different reason than the ones she used to receive. Not to mention she looks so darn cute wearing her favorite pink knitted hat with brown yarn pony tails. Now that her hair is growing in, she wears her hats more for a fashion statement. And, believe me...statements are made. She still shies from the attention she receives when people comment on how cute she looks. She gives me "that look" and I'm supposed to answer any and all questions and comments for her. I gladly oblige!

The older kids should be home from school soon and Corinthian and Isabella have a dance tonight...first middle school dance for Isabella. Then the family will be heading to Norman, OK for a family reunion on my dad's side of the family tomorrow. I'm really excited about it and can't wait to see and hug familiar faces!

Everyone have a wonderful weekend. Let by-gones be by-gones and let your heart be moved by someone or something! Love to you all!

Kerry
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Old 10-04-2009, 04:26 PM   #362
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Please keep sweet Sicily and her family in your thoughts and prayers as her scans approach.
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Old 10-05-2009, 12:39 PM   #363
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Latest update from sweet Sicily's site.

Monday, October 5, 2009 2:35 PM, CDT

Good Afternoon,

Sicily slept in until after 9:30 this morning...an occurrence that almost NEVER happens. I guess all the running around she did this past weekend at a family reunion had her needing to do a little catching up. More importantly, she slept the entire night in her own bed in her pink and yellow bedroom. She has spent the better part of the last year playing bedroom hop-scotch between her sister and brother's rooms. I'm glad she is starting to feel comfortable in her own quarters! She has been happy all day and hasn't gotten upset with me for anything, big or small...amazing what a good night sleep can do for the soul! ; )

As we were driving to the reunion Saturday morning, I could tell Patrick was deep in thought. As the four kids were busy drawing or writing in notebooks, I asked if there was something wrong. He said he was thinking about what we were doing a year ago this weekend. I remember well.

We drove up to Wellington for several reasons. One was to celebrate Elias' birthday with his old friends, another was to attend the Knights of Columbus breakfast that was in Sicily's honor, and the last reason was to be around family as we shaved the last bit of wispy hair off of Sicily's increasingly bald head. That turned out to be not as traumatic as what I had expected it to be. What ended up hitting us in the gut the most was that Sicily's legs began to hurt her so much that she couldn't walk. She crawled around on the floor...a subsequent side affect of the chemo drug Vincristine.

She also had developed a cough that eventually robbed her voice box of much strength, so she was hard to hear. We were scared. We wondered if this was a sign of things to come for her and us down the road. But, thankfully, as quickly as these things came about, they disappeared and Sicily was back to having more energy than we knew what to do with.

We were told and had prepared ourselves for all the potential affects and experiences that might show up at anytime during treatment. After that weekend, we expected more, but were so blessed that nothing serious every reared it's ugly head. It was such a joy this past weekend to see her running around with her siblings and cousins outside in the wide open air. Some days her battle seems like it was so long ago, when other days it feels like it was just yesterday we were still worrying about every little thing!

More memories just came flooding back when Sicily brought down a movie to watch this afternoon. It's the movie that I could recite in my sleep. The movie that played over and over and over while spending twenty-two days in the hospital..."A Christmas Story!" And as she brought it down from upstairs, she was laughing and giggling with her hand over her mouth. As if she thought for a minute I might not let her watch it? I smiled and proceeded to play it for her.

Corinthian and Isabella had a blast at their middle school dance last Friday night. I worried about Isabella as she has turned into somewhat of a loner at school, but she was giddy and excited when I picked them up afterwards. We don't just worry about Isabella academically, she is struggling socially. I've offered to let her invite a friend or two over sometime to spend the night, but she is not interested. Thankfully, she will open up to me and talk about things that bother her, but as a mom, it only makes me feel more helpless and I don't know what to do for her.

She doesn't like what she hears kids say or talk about at school. It bothers her when she overhears kids make fun of others. What is a parent to do when their child is so sensitive. On one hand, I'm so proud of her for being true to herself, but I worry about her alienating herself from other girls her age. She has so many fears of saying the wrong thing or doing something wrong that she would just rather be by herself. It's killing me!!! Anyone who knows her or has a chance to get to know her can attest to what a fun loving sweet girl she is. I think it might have helped a bit when some of the girls she says are her friends saw her having fun at the dance Friday night.

Isabella is the type of person that when she is at school, she is pretty much just about school. It takes everything she has to understand and comprehend what is being taught. She complained this weekend that she brought home science homework ( a class we were told would never have homework and she brings it home every night) because they had a substitute teacher in class on Friday, and because several other kids were talking, she could not stay focused on her work. She is like her mom...we are both easily distracted and have a hard time focusing if there are too many other distractions. I can manage, but how do I help her?

I'm starting to feel overwhelmed at times with Isabella's situation. I'm scared for her and just want her to be happy. Isn't that what parents want most for their children...for them to be happy? Healthy and happy...that's all I want for all of them!

Sorry for rambling so...I've said it before, even though this site has Sicily's name at the top, we are a family and each and every thing that one or more of us goes through, affects the rest! I just ask for prayers for Isabella's contentment! And get the gum ready for Friday. It will be here before we know it. I'm still doing good. Whatever the news...we will be fine!!! Love to you all!

Kerry
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Old 10-08-2009, 06:17 AM   #364
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Please pray for sweet Sicily's scans tomorrow to be CLEAR!!
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Old 10-08-2009, 06:34 AM   #365
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Will gladly add my prayers to the many others being said for this preciuos child and her family.
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Old 10-08-2009, 06:36 AM   #366
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Thanks so much Betty.
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Old 10-08-2009, 10:28 AM   #367
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She is also in my prayers! Along with Kerry and the rest of the family! I know this is one of the most stressful times after treatment ends!

Hugs and Blessings,

Jane
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Old 10-08-2009, 01:40 PM   #368
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Thanks so very much Jane, you are so sweet!

As Sicily's 'adopted' Sicilian grandmother, must say it will nice to hear good news after her scans as soon as we possibly can.
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Old 10-09-2009, 06:50 AM   #369
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Sweet Sicily is having her scans today - please pray for her and her family!
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Old 10-10-2009, 09:19 AM   #370
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LATEST UPDATE

Friday, October 9, 2009 12:44 PM, CDT

Afternoon all,

No news and may not hear anything about the scan results until Monday. Note to self...avoid if at all possible scheduling CT scans on a Friday.

I'm actually doing fine. I feel a little anxious on the inside. Sicily is happy and energetic and spunky...she is living and loving life to the fullest...as we all should be. Patrick drove Sicily to the hospital this morning as I waited around the extra fifteen minutes to get Elias off on the bus, then I met them there.

As I was driving down the Creek Turnpike, I was listening to the radio. Most days I have a favorite CD playing, but today I was just in the mood for the radio. A song by the rock group Nickelback came on titled, "If Today Was Your Last Day." I listened intently to the lyrics. Needless to say, they moved me. I can't explain what it feels like to be in the shoes we have to wear from here on out. But I am still filled with innocent and naive hope about Sicily's future, even though the mere thought of her having to keep her port in place for the next year says to me that I'm not the only one anticipating her cancer to return. I've told Patrick on many occasions that I'm almost resolved to the fact that she will relapse, it's just not knowing when it might happen that can leave me on pins and needles. I pray right now for just another three month gift until the next scans in January. If it is meant to be, it will be!

This morning as I drove to my destination to be by my daughters side, I felt a certain elevation of emotion as I turned onto the street leading up to the hospital. I looked up at the seven story building with it's big glass windows knowing there might be families in some of those rooms we once occupied... families still trying to navigate their way around the world of pediatric cancer. Even from the road I could see which rooms may have patients in them due to items sitting on the windowsills. It makes my heart ache, but the ache I feel is not for our own situation. It's for the families just finding out their child is sick.

I've journaled about this before, but I am giving huge credit for my mind being preoccupied in such a positive way on a very difficult day to Jeff Castelaz...Pablo's dad. Tomorrow kicks off "Palove Across America" and I can't explain the excitement I feel with this happening. When you have battled and endured what parents of children with cancer have had to do, you want to shout from the highest mountain at the top of you lungs that you want this to end.

You want a cure.

You want no child or family to go through what you've just been through. Jeff is doing what so many of us want to do...bring pediatric cancer into the forefront...into the mainstream of everyday life and conversation. He is getting people to want to take action. And he is doing his part by cycling over three thousand miles in thirty days. Please, please, please check out www.pablove.org and follow this incredible journey and support him in anyway you can. Jeff may even talk about Sicily on one of his rides. We feel an extra special connection to this amazing family, even though we have never physically met, our lives have intertwined because of anaplastic Wilm's.

It is cold and cloudy here, very reminiscent of the days we trekked back and forth to the hospital for treatments. On the drive back home with Sicily buckled in safely behind me, the Nickelback song came on again. I have to say I smiled because it truly felt like a message to me. So I will not waste our precious weekend with needless worrying.

We will eventually find out what our next three months will entail...living somewhat of a normal life, or delving back into the world of pediatric cancer. God has prepared me either way. My house is not prepared, but my heart and soul are! We have plans in the morning to visit a pumpkin patch and petting zoo. Last year, Sicily and Elias even rode a camel. I have yet to cross that off my bucket list, but don't count on it happening tomorrow! Believe me if it did, you would see a picture of it! ; )

We will spend the weekend having some fun, and hopefully keeping our minds off the impending news! I will post as soon as I hear anything...good, bad or down right ugly! Just knowing how many people are still with us and are continuing to lift Sicily up in prayer, gives such comfort!

God Bless You All! Sicily wants to watch a movie...A Christmas Story...is she her mother's daughter or what? Loves anything to do with Christmas! Have a great weekend!

Kerry
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Old 10-12-2009, 10:32 AM   #371
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My heart hurts so much to read this today. Please, please, please pray.

Monday, October 12, 2009 1:05 PM, CDT

I'm dizzy and I feel like I'm going to pass out. Just talked to Dr. Hum...they are concerned because they think there is something going on where Sicily's right kidney used to be, the kidney bed. She has calls into other doctors and promised to get back with me later. Sicily is asleep on the couch and is excited to go to dance at 4:30. Please, please, please start the prayer chains going for our precious little girl. My heart is breaking and I'm hypervenilating!

Kerry
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Old 10-12-2009, 10:53 AM   #372
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Caterina, I feel the same, I have tears running down my face as I read this and and trying to type. I am praying, I have been ever since I read the first post about this precious child and the entire family, I feel like I know them, from reading Kerry's journal, will continue to pray everyday!
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Old 10-12-2009, 11:05 AM   #373
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Originally Posted by shelsmom View Post
Caterina, I feel the same, I have tears running down my face as I read this and and trying to type. I am praying, I have been ever since I read the first post about this precious child and the entire family, I feel like I know them, from reading Kerry's journal, will continue to pray everyday!


Thanks so much Betty, pray that I will be able to minister to the family and encourage them. Would love to call but think it is best to wait a bit - it would be terrible for me to get too emotional. Must say, was not expecting this.
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Old 10-12-2009, 11:55 AM   #374
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No I wasn't either, she is doing so well and jsut living a normal life of a little girl. I'm planning on sending a card but will wait a few days and see what more the drs tell them. Praying and hoping with all my heart it isn't anything, and I will also be praying for you, but I'm sure when the time is right you will know just what to say to help them cope. God will give you the words.
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Old 10-12-2009, 01:22 PM   #375
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Second post from Kerry... please pray...

Monday, October 12, 2009 3:44 PM, CDT

Second posting for today.

Dr. Hum called back and reported that the newly discovered mass measures 3 x 4 cm. She is sending Sicily's latest scans to OKC for our surgeon to review and decided the next step. Most likely it will involve a biopsy. We did not do a biopsy the first go around as it was explained to us that it may not produce accurate results. In other words, the wedge taken could come back with a favorable histology while the back side of the tumor could be unfavorable. We just jumped into chemo to see what would happen and for us it worked. We shrunk the tumors enough to proceed with surgery.

This time, we could just go directly into surgery as we don't need to spare kidney tissue, but we won't be able to see if the chemo is productive. The best thing we think at this time is to biopsy and hopefully get a decent feeling as to what we are dealing with. Then hopefully surgery would follow at a later date.

I doubt I am making any sense...I'm still in shock and trying to absorb some of the options that are available. I do know that we will be going back to OKC for any surgeries. We will be working with the same surgeon who performed Sicily's other surgeries. As Patrick put it..."you shouldn't change horses in the middle of a race!"

The reality hits harder this time around just knowing how difficult it is to be away from home and the lives of our other three children. I pray Isabella and Elias won't slip through the cracks. Luckily, we have a parent teacher meeting with Elias' teacher tomorrow and I have plans to talk to the middle school counselor tomorrow, as well.

We should hopefully hear something back from the surgeon by Wednesday afternoon. We would still love to take our little trip to Branson as we had planned for fall break. If it is decided to move briskly with the next step, we will forgo it and proceed with what needs to be done.

I better run. I need to get little princess dressed for dance class. May be the last one she will get to take for awhile.

Patrick and I did explain briefly to Sicily that something was going on inside her tummy again. All she did was ask, "Why?" And wanted to know if she was going to have to go back to the hospital. We told her, "Yes." She sort of just shrugged her shoulders and skipped out of the room.

I will also take her to school tomorrow. Not sure what will happen after tomorrow, so I don't even want to tell her she may not get to return! Thank you all for the continued and "beefed up" prayers. They got us through once and they will get us through again!

God Bless!
Kerry
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Old 10-12-2009, 01:22 PM   #376
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No I wasn't either, she is doing so well and jsut living a normal life of a little girl. I'm planning on sending a card but will wait a few days and see what more the drs tell them. Praying and hoping with all my heart it isn't anything, and I will also be praying for you, but I'm sure when the time is right you will know just what to say to help them cope. God will give you the words.


You are an awesome friend, thanks so much.
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Old 10-12-2009, 06:37 PM   #377
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Sicily's mom, Kerry, just sent this...


http://www.youtube.com/watch?v=ndeCo...oshare_twitter

Please feel free to distribute to others.
Kerry
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Old 10-13-2009, 06:26 AM   #378
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Another awesome update from sweet spitfire Sicily's mom, Kerry. Thanks so much for following their journey and praying!

The video Kerry speaks about is posted separately above this post. Please take a moment to see this lovely open letter from a dad who lost his little boy to Wilms.


Hello dear family and friends,

Insomnia kicked in about an hour ago and my mind was not going to let me sleep anymore. This occurrence feels very dejavou (sp?)...I've been here before. That's how yesterday felt having to call Patrick once again and tell him the news. This time he was an hour and a half away in another city and the wait for him to get home seemed eternal. But he did make it home safely. Sicily was so excited to see her daddy. We pondered the right words to explain to her that our lives were going back into the blender...at least that's what it feels like.

I had great advice from experienced veterans in the field and applied it. We just explained that the doctors think something may be growing in her tummy again. Being of the inquisitive age that she is, "Why" was the only question. If we could answer that question, we wouldn't have to be here in the first place. "Why" may never be answered in my lifetime. "Why" is something we have to force ourselves to get passed. We are not going to give "Why" another thought, because it would be a waste of our precious energy! So our new hand has been dealt and I'm ready to put on my poker face and not let our opponent see my fear. It's there...it's still raw and on the surface. But if Sicily is going to be fearless, then so will I!!!

I know there will be a lot of new people following our journey, and for that..."God bless you and welcome aboard!" All thoughts, prayers, meditations, screams and chants are welcome and very appreciated! Believe me, we will be heard!

I have to first extend a heartfelt thank you to Jeff and Jo Ann for kicking off this chain of events that will help us get through the tunnel we are about to enter. They are our flashlights, if you will, and our helping to shine light on our path. Patrick and I have never had the pleasure of meeting this amazing couple, yet, and have hopes to some day...and we never had the absolute pleasure of getting to meet their spark plug, Pablo, before he passed away in June. But because of Jeff's blog, I felt I knew Pablo, and loved him like so many around the world did, as well. I have felt his presence in my heart, and in my surroundings thanks to things Jeff has shared.

One example...after Pablo's passing, butterflies became very significant and sort of representational of Pablo. They were seen fluttering around his burial site. They escorted Jeff on a bike ride one day. Butterflies, I later learned, are symbolic of resurrection. In August, Sicily and I walked through the doors of the pediatric oncology clinic in Tulsa to find ourselves surrounded by butterflies. Not the real winged creatures, but pictures and murals hanging on the walls. I've walked through those doors dozens of times and never gave the butterflies much thought, until that day. I had a warm feeling inside when the first thing I thought of was Pablo.

This fun loving, full of life little boy would have been so much fun to be around. Sicily would have liked playing with him. She loves playing Hot Wheels and Legos with her brothers. I've often times imagined what it would have been like to meet Pablo. Knowing of his spunk and zest, I would have done something to him that Sicily loves...I would have asked him for a high five.."then on the side, then way down low, then..." as I pull my hand back fast..."too slow!" That always solicits a smile! Especially from the person who just made you slap your own leg as you missed the hand! ; ) I can be ornery, too.

The reason I talk so much about Jeff and Jo Ann is because I believe they were put into our lives for a reason. They are, in a sense, our pediatric cancer mentors. They have traveled this weary rode, and very recently, at that. I'm scared that the wounds are still very raw and I won't ask of them for much! They have already gone above and beyond for us and for so many! I have been inspired by Jeff's blog for some time. I followed it like an addiction to a soap opera...only this was real life and the tears that flowed were about a real little boy! I added a link under Resources up at the top for a video blog that Jeff and Jo Ann set up on youtube last night. Patrick and I sat with tears chasing tears from our eyes yesterday evening as we watched it together for the first time. It speaks for itself!

As the seconds and minutes continued to tick by on our clocks yesterday, Sicily was still her usual happy, energetic, spirited self. I sat with cameras in my lap as I watched her dance class late in the afternoon. On the way home, she asked if I was sad. I said, "Yes, I am a little"...not being completely honest with her. I said, "How are you doing?" With a chipper voice she replied, "Good!" I said, "Are you ready to beat this thing again?" In the same exuberant little voice, I heard, "Yep!" I said, "Me, too!!!"

At home, she surprised us when she started to talk about Esther, her precious little six year old hospital companion who passed away in May. She started to verbally compare herself to Esther and remarked that her cancer came back like Esther's did. But then she continued and stopped my heart beating by saying, "Esther's in heaven, but I'm not going to heaven." I honestly think the clocks in the house froze for a few minutes and I couldn't even open my mouth to speak. Sometimes the words just come to me...other times, there are no words!

So, with that, I may try to go back to sleep for awhile. Doubt it will happen...my mind already woke up my stomach but I'm going to try and ignore it's request. This site will be my therapy, again, and I want to thank each and every one of you for your listening ears (or reading eyes) and your hearts full of love and compassion. We feel wrapped in a world of arms right now.

God Bless and have a wonderful day. You can rest assured I will journal if and when we receive anymore news or directions!

Kerry
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Old 10-14-2009, 05:44 AM   #379
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I am putting a card in the mail today, just saying they are all in my thoughts and prayers. I know they know they have thousands of people praying for them, but its what I do, I send cards....and hugs and prayers.
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Old 10-14-2009, 07:38 AM   #380
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Wednesday, October 14, 2009 8:19 AM, CDT

Good Morning all,

Another day under the umbrella. It is cold, cloudy and a little rainy outside (it's "spit'in" as Sicily would say) but our umbrella is up inside trying to protect us from the storm that is brewing. I am able to sleep a little at night, but my mind is racing when my head hits the pillow and I wake up several times with ideas and thoughts running amuck.

When my eyes open for good in the morning, again my mind is still working over time. It's a good thing, though. I'm building my information arsenal so I can be on the same page or even one step ahead of all the decision makers. This time around, I'm planning on holding onto the ball more than our first game with cancer. I'm gonna wrap my arms around it, hold it tight to my body and only shoot for the basket when we are ready to score a goal.

After Sicily's first cancer diagnosis, Patrick and I, as all parents really are, were greener than a freshly planted apple tree! We looked blindly and trustingly into our oncologist and surgeons eyes through our own swollen eyes and tear stained faces and said, "What do you recommend we should do?" We knew the decisions were still ultimately ours to make, but we had zero knowledge and zero experience in what we were making our decisions on, so we forged ahead under their wings.

We still have complete trust and faith in these great doctors, but this time we are seasoned, somewhat chopped up pieces of aged firewood ready to be thrown into the fire. The fire is burning inside my belly and I am so anxious to get it to inferno stage! We are so much more equipped with what we have learned ourselves and what other parents have learned, experienced and shared with us that I feel empowered. That being said, emotionally I'm still a complete yo-yo!

Patrick and I took Sicily to preschool yesterday morning, maybe for the last time for awhile...maybe for the last time, period, as she may not be able to be around other children for a very long time...depending on her treatment plan.

Our hearts continued to chip away with things Sicily says and does. First thing she said to daddy yesterday morning when she woke up was, "Do I have cancer?" I could tell her little mind grasped at the thought that maybe it was just a bad dream. Maybe she had dreamed we had to tell her the cancer came back. It is a hard thing to do to tell her all over again, that yes, the cancer is back. This morning, she asked, "Do I have to go to the hospital today?"

At preschool yesterday, her beloved teacher told me that Sicily was just not herself. She had said her cancer came back and she wanted to go home. Miss Sylvia was going to have none of that...it became "Sicily Zeka Day" and they had a party. Someone brought in cupcakes and the teachers pulled together some funds and someone went out and bought her a goodie bag. I went for the last hour of preschool and photographed and video taped the festivities. I was especially touched when one little boy wanted to give her a hug before she left.

Last night, I completely lost it as I unpacked her backpack and lunch bag and set them aside, so sad that Sicily's childhood is going to be robbed once again. She loved going to school more than anything. And I cried for her teachers and the school staff who will suffer, as well, having to look at that empty little desk and empty little chair where a vibrant little four-year-old used to sit. CANCER SUCKS!!!

While Sicily was in her classroom, I stayed at church to attend the funeral of the daddy of one of Sicily's school mates. I was well equipped with the water works and church was just where I wanted to be. I couldn't go home alone! The funeral was for a handsome, life loving, doting father and husband who entered heaven last Thursday at the age of forty-six. I don't know the family very well at all, but I was fortunate to get to spend time with the precious little girl over the summer when I helped with vacation bible school. I was there to pay my respects to her daddy on behalf of her, and to pray for her and her mommy. As I signed the guest book along with a couple of other preschool moms, I picked up a little prayer card neatly stacked beside. It was the Prayer of St. Francis of Assisi...one I've always loved reading:

Lord make me an instrument of Thy peace.
Where there is hatred, let me sow love.
Where there is injury, pardon.
Where there is doubt, faith.
Where there is despair, hope.
Where there is darkness, light.
Where there is sadness, Joy.

O Divine Master; grant that I may not so much seek to be consoled as to console; to be understood as to understand; to be loved as to love; for it is in giving that we receive, it is in pardoning that we are pardoned, and it is in dying that we are born to eternal life.

I will be carrying this little prayer card with me on this next chapter of our lives. Silly as it may sound, I think I was supposed to attend that funeral so that I may receive this message. The card has the name, in loving memory, of the little girl's daddy. Every time I pray this prayer, I can think of her and her mommy.

I could stay on here all day and type any and every thing that comes to my mind, but that would be selfish of me since the kids are on fall break and we need to pack as we are hopefully going forth with our little mini-vacation.

I haven't heard a word from anyone what our next step is. Hoping for some sort of meeting or consultation by early next week. I'm a planner and I need to plan! I'm not very organized...I've always wanted to be but somehow never manage to get there. My overpowering, very strong right brain won't let me do it! ; ) Pray we hear soon what we will do next!

Kerry
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Old 10-14-2009, 07:40 AM   #381
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Wednesday, October 14, 2009 9:49 AM, CDT

Second journal entry already for today.

First one is quite a bit longer...so grab a cub of coffee or tea before you sit down and read it, if you haven't already. I no sooner hit the save button on my first posting when the phone rang and it was one of the oncology nurses from OKC. Not to get too detailed, but we tentatively have a biopsy scheduled for Tuesday, October 20th. We will hopefully get to talk to Dr. Meyer soon. At least I have a date to circle on the calendar and I can focus on life at hand which will include our little trip to Branson, Missouri. We will start trying to get things in order and covering all the possible bases.

The roller coaster is filling up fast, so grab a seat and get ready for a long, up and down, twisting, turning, loopy ride!!! I'm gripping the safety bar tight right now, but once I get acclimated to the ride, I will throw my arms up over my head and enjoy the ride...THIS IS STILL OUR LIFE!!!

Kerry

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Old 10-14-2009, 04:38 PM   #382
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Wednesday, October 14, 2009 4:50 PM, CDT

Journal update #3...

I was able to speak to our pediatric oncologist in Oklahoma City on the phone. We meet with him Monday afternoon to discuss our ideas. We have a game plan and want to try something not common in the pediatric cancer treatment world. Pray we can make this happen.

We don't want to do the biopsy on Tuesday. Not worth the risk! I'll explain more of the interesting details at a later date, but I am excited about the possibilities.

Thank you again, Jeff and Jo Ann...I am pumped!!!

I'm skipping off to pack for a couple days of fun filled family frolics!

Love to you all! ; )

Kerry
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Old 10-14-2009, 06:57 PM   #383
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Not the message I wanted to hear!!!!

So, I'm one of those screamers... in my head, at least! It's picked up Kerry's earlier entry and won't let it go..........

CANCER SUCKS!!!!!!!!!!!!!!!!!!!

I hate it!!!! It is an ugly, nasty beast that won't just go away. My head aches and tears keep flowing.....

But, Kerry is such a warrior, such a great fighter. Don't even pay it any attention, she says!!!

...it is more like a temper tantrum, you just have to ignore the thoughts it puts in your head. But unfortunately, unlike a temper tantrum, it doesn't just go away when you ignore it. AND you can't let it rob you of your life either. The Dugan's taught me that! LIVE EACH DAY!!!!! Don't let it take any more days than it has to. You need to live, and have fun, and just do as much as you can.

It also makes me want to fight! To help families suffering from this awful disease. I just can't seem to get enough done. I don't have enough hours in the day. I keep wracking my brain, trying to think of ways to get more people involved in the fight. I'm reading, I'm forwarding, I'm praying, I'm organizing, I'm talking, I'm making, I'm donating... and then I do some more. It is a non-stop battle that doesn't take STOP for an answer. It will easily accept "I give up" if you let it, I've seen it happen... someone who can't fight anymore, for what ever reason... too weary from the battle... but sometimes it will even take you when you're kicking and screaming!

OK, enough ranting. That must be why I haven't logged on to my e-mail in a few days. I didn't want to hear/read the news. I have 3 friends who are currently battling cancer as well.

Please keep Shelly in your thoughts and prayers. She has her own caring bridge site: //http://www.caringbridge.org/visit/shellyoleary
She fought this battle as a teen, and now, 18 years later, is faced with it again. She fought a good fight and WON!!!! Please pray she can keep up her strength for the battle again!

My other friend, Jan, is still in the diagnosis phase of her battle. They are trying to decide what type of cancer she has. She needs many prayers that her cancer is not widespread.

My other friend, Cheryl, is a young(40) mother of 2 fighting breast cancer. She found it early, thank goodness, while doing a breast self exam.

Thanks for all the updates, Kerry. You truly have a wonderful way with words, and I laugh and cry with you through your updates!!!

Positive thoughts and prayers are continuing to come your way!!!

Caterina, thanks for continuing to update us on little Sicily's battle. She is a fighter and a champion, and so is her mom!!!

Hugs and Blessings,

Jane
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Old 10-14-2009, 06:59 PM   #384
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Red face note to everyone...

I'm so happy that Sicily and her family are still planning on having a wonderful vacation. It took me all day to compose the previous post, and didn't see Kerry's 3rd update!!!!

LIVE each day!!!!!
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Old 10-17-2009, 06:20 AM   #385
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A Saturday morning bump for precious sweet Sicily!
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Old 10-19-2009, 07:31 AM   #386
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Today's Update

Monday, October 19, 2009 9:16 AM, CDT

Good Morning all,

We had a very nice time on our little family get-a-way. It was nice to not think about the journey ahead for a couple of days. The thoughts were still there, but we were busy enough that I didn't focus on them too long. It was a little hard coming home and facing reality, but I feel extremely strong right now, both mentally and emotionally, and I am so ready to sit down and talk to Dr. Meyer this afternoon in Oklahoma City!

I will try to briefly explain what we are hoping to do in regards to Sicily's treatment. It's called macro-array technology. It is basically a series of tests that would be performed on a sample of the tissue from the tumor after it has been removed. A facility in Arizona called CARIS Molecular Profiling Institute would perform the tests which would hopefully show what kinds of chemo might work best on Sicily's exact tumor. It might also show which agents the tumor could be resistant to. This is cutting edge technology and not something in standard practice with pediatric cancer patients. There is also a chance nothing will be found to work, but we feel we have nothing to lose in at least trying this.

Remarkably, it is covered by a lot of insurance plans, and my best guess is because if it can be determined that certain drugs might successfully kill all remaining cancer cells and another relapse treatment can be avoided, it would save money in the long run. That is just my uneducated guess, but it makes sense to me!

So, the catch is that it takes some time for the institute to coordinate with the pathology department at the hospital where the surgery will be performed, in our case it will be OU Children's Hospital. I was told by a representative on the phone that they require one to two weeks. I don't know if I can patiently wait that long for this mean cancerous tumor to be removed! But, some of these decisions are not in my hands so I will pray to God for the patience...He's pretty used to me making that request of Him!

Today I ask for prayers that we can get all those involved with Sicily's treatment on board with this idea and that things go smoothly and action is swift. I was ready for surgery a week ago, but God has other plans, I'm sure, so I will continue my vigilance and wait!

I will update as soon as I am able, but it most likely won't be until late this evening.

Love to you all!
Kerry
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Old 10-19-2009, 06:41 PM   #387
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Monday, October 19, 2009 6:48 PM, CDT

Good Evening,

We are home and Patrick and I are full of hope, satisfaction and relief.

Our meeting with Dr. Meyer was perfect. We are all on the same page and he has agreed to go forth with our desires. There are still some "t's" to cross and some "i's" to dot before we can proceed, but the journey has begun and we will hopefully be skipping down the yellow brick road very soon.

I can't explain how good it feels to have this afternoon behind us and our relationship with Sicily's oncologist in OKC starting off with a firm handshake. After spewing out all the information I'd gathered over the past week and illustrating all my thoughts to flow out of my mouth in some sort of sensible fashion, Dr. Meyer chuckled and laughed saying I was making his job easier! I told him I was not trying to do his job for him...I was just doing my job...I'm just a mommy trying to do whatever is possible to save her little girl's life! I believe there is mutual respect amongst all involved in Sicily's care.

It's hard to describe the feelings and emotions that came into play as we drove the almost two hour drive to Oklahoma City...a drive that is now as familiar to us as the lay out of our house. As we passed the same colorful foliage we passed a year ago, I found myself reminiscing to the different drives we made back and forth on that stretch of turnpike. Many were filled with anxious, frightened feelings, while others were filled with dread and despair.

This afternoon, I was filled with what could only be described as excitement. Who would or could ever imagine experiencing this type of emotion driving to meet with their four-year-old daughter's oncologist? Strange as it sounds, I was busting at the seams. I could not wait to sit in that little examine room. I could not wait to use my sales pitch on Dr. Meyer and I was ready with every little possible scenario that I could come up with to make him understand how strongly we want to try this. And guess what? It worked.

In Dr. Meyer's defense, he was not a hard sell! He listened to my simple minded analogies and agreed we really have nothing to lose in trying this out. "This" being the macro-array technology that "might" help us determine what chemo drugs may or may not work on Sicily's exact tumor. This is not fool proof, but the worst off we could be after doing this is still not knowing exactly what drugs will work. If after she completes this treatment and the cancer returns a third time, then we kick in plan B, which would most likely include a stem cell transplant.

We have so much hope because we still have options. I am in a good place right now just knowing that. I continue to wake up every morning and tell God that I am placing this in His hands. That can only explain my calm, relaxed demeanor and how I'm thinking and seeing so clearly these days.

The next step is not marked on our road map yet, but it is merely around the corner. Dr. Meyer will confer with our surgeon, Dr. Puffinbarger, and surgery will soon follow. As far as we know it could be scheduled for the end of this week or sometime early next week...at least that is what we are hoping for. None-the-less, it will be soon. The pathology department will need to be in possession of the specific kit from CARIAS Molecular Profiling Institute before we can proceed, as well. It will all come together.

For now, we continue to enjoy our family life and be thankful for all our many blessings. One blessing which may seem small and insignificant to some, but is so incredibly huge for me is the simple fact that Sicily will get to go to school tomorrow, and potentially the rest of the week. As we wait for word, we will continue to give her the quality of life she has grown accustom to these past six weeks.

Tomorrow is picture day at her preschool and there is just something emotionally healing for me to have her preschool picture taken. I can't explain why, but it means the world to me. And it will to Sicily, too. There is some risk involved sending her out while the flu season rages all around us, but she could just as easily contract something from her siblings coming home from school.

I believe the speed at which she may heal and recover from her impending surgery could be the result of her level of happiness going in. If I can keep her preoccupied and focused on her own little world that currently surrounds her right up until surgery time, she will be more than just physically strong, she will be mentally and emotionally strong! At least that is how Patrick and I see it. She is still such a happy little girl...so full of life and energy. I receive all my strength from her. She is an amazing little human being!

I will post when more news is available. And I may post just to ramble my inner thoughts, as I've done on many occasions. Where would I be without my 24 hour on-line therapy sessions? I'd be lost, that's where I'd be!
God bless you all!

Kerry
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Old 10-20-2009, 08:01 PM   #388
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A prayerful bump for sweet Sicily.
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Old 10-20-2009, 08:17 PM   #389
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Tuesday, October 20, 2009 1:00 PM, CDT

Hello,

Sicily is at school right now and I am coping with empty house syndrome. I am actually doing very well...a testimony to answered prayers.

For one to look at her, they would certainly scratch their head and question, "She really has cancer?" Many types of cancer have no symptoms or pain to accompany the malicious growth taking place inside the body. In Sicily's case, the tumor in not encroaching on any organs that we know of so it is merely existing and using her blood supply to feed it's growth. It is scary to think of that "thing" growing inside her abdomen, and if I let myself venture down that path too long, my psyche starts to wain...so I don't go there.

Right now, Sicily is the same happy, energetic, rambunctious little girl she was a little over a week ago before we found out the cancer had returned. So I will continue to skip through the day and follow her lead the best I can. My mind still wants to layer her in bubble wrap and set her on the shelf to protect her from any harm, but any one who knows this bundle of unbridled energy knows that would and could never work. She would fight her way out of it like Houdini and scamper down the shelf like a mouse. She has too much living to do to sit still.

Thoughts of her can only make me smile! I know that her teachers and classmates are enjoying her today, and that in itself is such a gift. God continues to teach me ways of being unselfish...sharing time with Sicily is one of them!

Yesterday morning, Sicily and I accompanied Elias to the ENT doctor's office for his weekly allergy shot. As we drove through the winding parking lot of this particular medical facility, we witnessed a crew of paramedics wheeling a patient from a medical helicopter. Sicily and Elias started to conceptualize ideas as to what might be wrong with the elderly lady. Sicily guessed that maybe she had been in an accident. I piped in that maybe she was just really sick and needed extra medical attention. I didn't say anymore about it, but could see the wheels turning in Elias' head as he sat quietly buckled in his seat.

After we were done at the doctor's office and were pulling out of the parking lot, Elias asked me a question. He said, "Is cancer the worst kind of sickness there is?" I have no medical background so I could not come up with something worse than cancer, but managed to explain that cancer is a bad disease, but there are other things not as bad that people can die of, as well. I brought up the flu, and explained that it can make people really sick, too, and that is why he and Sicily along with their older siblings got their flu shots last week.

Cancer is a hard thing to explain. Most cancers, themselves, don't make people sick. The treatments used to rid their bodies of the cancer can cause terrible sickness...but how do you explain that to a child? When Sicily was first diagnosed back in August of 2008, we would refer to her as "being sick." One day, I think she finally had enough of being called "sick" as she laid her hand across her forehead as if checking for a fever and insisted, "I am not sick!" So from then on out, we quite referring to her as "being sick!" She sure set us straight on that one!

As I drove her to school this morning, Sicily asked, "Is this my last day of school?" I explained that I hope not, but that we are waiting to hear when her surgery would be...but that I would keep taking her to school until the time comes. With great excitement and determination in her little voice, she proudly exclaimed, "I'm gonna beat cancer!" Who could argue with that? Like I've said before, she is my strength.

I pray, along with hundreds of others, I know, for Sicily to continue to be happy and full of life. How can I be anything else but happy and full of life right beside her? If you see me or talk to me on the phone, you will see and hear a happy person. Part of my defense and coping mechanism is to laugh and joke around...I do that when I am scared...I do that when I am nervous...it's just part of who I am. There is no rule or etiquette book on how a parent of a child with cancer is supposed to act.

I love to laugh through my tears and cry along side my laughter. Don't they say that laughter is the best medicine? I've only found that it helps. It's not appropriate in every situation or at all times, but it helps me along this difficult path I'd rather not be on. If the road is rocky, no one said you still can't skip! You might trip and fall a time or two, but you will cross the finish line, none the less...only covered in a few Hello Kitty band aids, if Sicily is your nurse! ; )

I better make use of what little time I have left before picking up my little ray of sunshine from preschool. And I am totally enjoying the celestial sun shining from above today as the next couple of days will be back to clouds and rain.

Tomorrow is Patrick's birthday...he will be forty-three years young. Birthdays mean more to us these days...we feel privileged to have lived as long as we have. If you were to ask Sicily how old she is, she will proudly tell you she is "four and a half." You better believe we say that "half" or she will correct us. We consider that "half" to be part of the miracle that she is still here! In a few months, I may teach her how to say "four and three quarters!"

Everyone have a beautiful day!

Kerry
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Old 10-21-2009, 02:12 PM   #390
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Today's update....

Wednesday, October 21, 2009 4:54 PM, CDT

Hello everyone,

Just a quick post...Sicily's surgery is scheduled for Wednesday, October 28th. I don't have an exact time yet and won't know until the Tuesday before. It's farther away than I had hoped, but I can at least circle a number on the calendar now and get everything in order.

Plans are made for the other three kids and their schedules will hopefully stay on track. I will be packing Sicily's Halloween costume for the hospital stay. She may not be able to trick or treat, but she will dress up just the same!

Don't know any of the specifics as to what will take place during the surgery. I was in contact with the institute in Arizona that will be performing the tests on the tumor tissue and it seems things are progressing as they should.

Thank you all for the thoughts and prayer and whatever else is being done, because they are working overtime! I still feel in control of my stress level and am even able to sleep at night...well, with a little help from Simply Sleep! ; ) I'll update more when I can.

Love to you all!
Kerry
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Old 10-23-2009, 07:52 AM   #391
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Friday, October 23, 2009 9:07 AM, CDT

Good Friday Morning,

I am feeling a little anxious this morning and have a bit of anxiety as Sicily woke Patrick and I up around 2:00 this morning complaining of her stomach hurting. When we asked her to show us where, she put her little hand on the right side of her lower abdomen...right where we suspect the tumor to be. I have a call into the oncology office in OKC to talk to them about it.

We haven't even viewed the CT scan ourselves, not that we could probably make heads or tales out of it...but I am interested in seeing the exact tumor location. We are wondering if it is attached to her stomach muscle. I will settle for just being told where it is at. That will be my question of the day to have answered. It will be a long five day wait if she is in pain. Sicily has continued to complain about it several more times this morning. We've ruled out hunger pains as she has eaten and continues to talk about it hurting.

For Sicily to complain about something hurting is very unusual. She has a very high pain tolerance. Higher than most adults. She takes after her Grandpa Zeka...a man who would get a root canal with out any kind of anesthetic. Way beyond my threshold for pain...way beyond!!! So I am hoping to hear something soon. Meanwhile, she is doing good, other than the annoying discomfort. She is happy, so I am happy.

I thought I'd take a little time and explain, as best I can, some of the decisions we've made and why. We don't want to biopsy this tumor basically out of fear...fear of what sticking or cutting into it might do. When Sicily was initially diagnosed with bi-lateral Wilm's over a year ago, it was explained to us that there are risks in performing a biopsy. First, there is always the risk of putting a child under anesthesia for the surgery. Children are more difficult to keep stable while under and if we could avoid having one surgery, we were all for that.

The American protocol recommends a biopsy to determine what kind of cancer it is. The European protocol forgoes the biopsy and goes straight into treatment. It is a gamble. There was no guarantee that we were dealing with Wilm's...it could've been another kidney cancer called Rhabdoid. I remember Dr. Meyer saying, "If it walks like a duck, and quacks like a duck...we will assume it is a duck." Basically meaning we will take our chances, and we did. The gamble worked out in the beginning.

After six weeks of pre-operative chemo, both tumors on each of Sicily's kidneys showed very pleasing amounts of shrinkage. It wasn't until after her surgery that the pathology on the right kidney tumor came back with such bad news...diffused anaplastic Wilm's. In hindsight, I still think we made the right decision in not performing the biopsy. But here is the thing, after the tumors were removed during her initial renal sparing surgery (renal sparing means we were trying to save as much of each of the kidneys as possible to maintain normal kidney function) we had nothing left to gauge whether or not the chemo we would be using next would work. So that brings me to our current decision.

If we were to have the biopsy, then we would have the tumor left in Sicily and would be able to visually see if her next chemo protocol was doing it's job. Before, she continued to under go scans while on treatment and they came back NED (no evidence of disease) but CT scans are not sensitive enough to pick up a few stray cells here and there. It is our feeling that her chemo was just strong enough to suppress them and keep them from congregating and forming anything substantial. Once her body was rid of all the chemo, they came out of their dormancy. That's just Patrick and I trying to make sense of the situation.

Back to now...we would rather go in and totally remove this mean little ball of badness and have it out of her instead of leave it in as a meter, if you will, to see if the chemo she will be on is working. I hope that makes sense. There is no right way or wrong way at this point. This is why having the opportunity to try out this macroarray technology is so important to us. If we can pinpoint drugs that might work or throw those aside that come back resistant without having to try them on Sicily first, it would be great. Again, like I said before, we may get nothing out of the testing at all, but we also have nothing to lose. If Sicily relapses again, we would still have an option or two left to try. That is where we stand. That is our plan and we're sticking to it!

I continue to take deep breaths several times each hour and even though the sun is hidden behind the clouds, I know it is still up there and I will see it again soon. Our focus for the next five days will be to love and nurture our four kids and prepare them for the time ahead. I think Corinthian will do fine...Isabella worries me a little with management of homework...Elias worries me probably the most. He already had a disturbing dream about Sicily last night. He is the most "feeling" of the four kids and even though he is onery and plays the pesky brother part very well, he is most sensitive to their needs. He and Sicily are buddies. They are typical siblings who argue and fight over the smallest things, but then they turn around and are there for each other when most needed. He's been ready to give his little sister one of his kidneys since day one. We've explained, first, that she does not need one, yet, and second, he has to be eighteen years old before he can donate. But if she can pull through and stay cancer free until her teenage years when she might need a transplant, we'll let him be the first to be tested for a match, if he is still wants to. Otherwise, I am first in line!

I wish I could stay on here and type all day long, but then I'd be even more stressed because nothing would be done or ready for next week, so I will sign off for now. Love you all!!!

Kerry

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Old 10-23-2009, 09:37 AM   #392
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Second posting - Sicily is running a fever and daddy is taking her to the ER

Friday, October 23, 2009 12:00 PM, CDT
Second posting for today...now my tummy hurts...with deeper anxiety. Patrick is taking Sicily to the hospital as I type this. Luckily he took off today to help get things in order around here. Guess he was needed otherwise as Sicily is now running a temp of 101.2 so she is in need of a culture drawn from her port to check for infection. They will most likely start her on antibiotics and will also swab her for H1N1. She had her seasonal flu shot already, so she should be okay there. Pray this is nothing major and won't throw off her surgery schedule. I guess our days of things going our way are running out! She may be admitted for observation. I'll update as soon as I know more! God Bless you all!

Kerry
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Old 10-23-2009, 03:41 PM   #393
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Post #3 for today...

Friday, October 23, 2009 5:42 PM, CDT

Journal entry #3...our Pocketful of Sunshine is home.

She ran in the door (yes, ran) yelling, "Mommy!" Always music to my ears.

Patrick reported that her CBC (blood work) looked pretty good other than her white count a little off most likely due to whatever is causing her fever. She's hungry, so that is always a good sign. It will take a little time for some of the test results to come back, but I think she is going to be fine. Prayer is a wonderful thing! Sleep is also a wonderful thing! Praying for wonderful sleep...for everyone tonight! We are in need of a good night sleep!

Tomorrow morning is going to be a little busy as Corinthian is participating in a fund raiser called "Laps for Little Ones" with his National Junior Honor Society gang, and he and Isabella are scheduled to play the piano in a little festival. I'm breathing a sigh of relief that neither activity had to be canceled. It is so important that we try to keep the other three kids involved in their activities! If we had to pull them out, even though they love Sicily to pieces and know that none of this is her fault, I still fear they may resent her down the road. It's a balancing act, but that is what also makes us still feel like we are living OUR lives!

With that, I will say "farewell" for now. I am just thrilled to not have to spend the night in a hospital room just yet. I am still mentally gearing up for the days ahead! It will be here before we know it! Have a super evening!

Kerry


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Old 10-24-2009, 08:33 AM   #394
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Saturday, October 24, 2009 11:08 AM, CDT

Good Saturday,

The sun is shining and it is a beautiful day. Sicily woke up with a fever of 102, but the Tylenol has kicked in and she is her usual self. Patrick was told that "no news is good news" from the Tulsa docs yesterday so we are to assume if we don't hear anything back in the next couple of days concerning the H1N1 test results, then we, ourselves, are going to conclude that Sicily's little body is reacting to the tumor attached somewhere in her abdomen and that is what is causing her fever.

In retrospect, before she was diagnosed the first time, she would run low grade fevers that were otherwise symptom free and we did not know why. She also complained of her tummy hurting but we dismissed it as gas. This could very well be the same thing happening again! Medical science is still presented with many mysteries that can't always be explained. Time will only tell. In the meantime, Sicily is still happy and that is such a blessing! We will continue to watch her closely and be a little extra pushy on the fluids. "Popsicles for breakfast? You got it!"

Sicily was very excited this morning as she received a new pink shirt in the mail today that claims she is "One Brave Chick." She immediately put it on and it will most likely be her attire Wednesday morning as we head to the hospital. ; )

Everyone have a wonderful weekend. We sure will!

Kerry
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Old 10-26-2009, 11:03 AM   #395
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Sicily's surgery is in two days - please pray for her and her family.
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Old 10-26-2009, 12:21 PM   #396
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Today's update

Monday, October 26, 2009 2:38 PM, CDT

Afternoon everyone,

Sicily continued to run a temp all weekend long but never complained or even showed any symptoms of illness. I gave her Tylenol when it went over 100 and just continued to watch her. She seemed to feel her usual self and even got mad at mommy and daddy for not letting her go outside to play in the leaves her brother raked up. She doesn't understand the concept of letting the body rest. It's usually all or nothing with her...she prefers life at supersonic speed.

Last time I gave her any medicine was at 8:00 last night and this morning when she woke her temp was 99.4. We consider that not a huge concern, so maybe she's getting rid of whatever is causing it. At noon, she was 98.8. I'm keeping track just so I could tell the surgical nurse when she returned my call, which she just did. They want her fever free without medication for twenty-four hours before scheduled surgery, which I also found out will be around 8:00 Wednesday morning.

Little princess is down for a nap right now letting her active body rest. Wish I could join her but there is too much to do. I will continue to check her temp through out the rest of the day and pray it stays within normal range.

We are ready to get this surgery under way and over with, but the last thing we want to do is have it done when her body is not well. Patrick and I still, in our hearts, think her little body is trying to fight the tumor. That is just what we believe. She is such a tough little thing that it would not surprise us if that were the case. None the less, please continue to pray that she is healthy enough for surgery on Wednesday!

I've decided to keep her home from school tomorrow, as well, just to be safe. I know she won't be happy, but it has to be done. We will run by and say "hi" and drop off some things we have for the preschool fall festival and then come home to finish packing. Oh...packing. Will I ever not dread that activity? Looks like I will need to repack my "permanently packed" bag full of necessities that I had the first six months of this year. We have no idea what treatment will entail. We will be waiting to make any of those decisions until after we get the possible test results.

So that is it in a nut shell, basically. I will post if anything changes. Otherwise, get your gum ready for the "gum chewing prayers" on Wednesday.

Patrick, Sicily and I will head to OKC tomorrow evening as we will need to be at the hospital by 6:30am. God bless you all!

Kerry
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Old 10-26-2009, 06:35 PM   #397
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Monday, October 26, 2009 8:37 PM, CDT

Second entry for today...not sure what is going to happen. Sicily's temp is at 101.4 this evening. I hate being in limbo like this!

I don't want to wait much longer to get this tumor out, but I also don't want to risk Sicily having surgery while having a fever. I will call the surgery nurse first thing in the morning, again, and talk to her about our options.

Please pray that Sicily wakes up fever free and remains that way! She needs to have surgery. Who knows what that nasty tumor is doing...it could be metastasizing as we speak. Pray, pray, pray!

Kerry
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Old 10-27-2009, 07:20 AM   #398
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PRAY, PRAY, PRAY

Tuesday, October 27, 2009 9:25 AM, CDT

Morning,

Just a quick update...Patrick will be taking Sicily to OKC to see Dr. Meyer this afternoon. They want to examine her and try to figure out what is going on with her temperature. This morning she is normal.

They also will send them to pre-op to visit with the anesthesiologist. There are many "maybe" variables floating around right now. They may go ahead and admit her tonight, they may not...she may have surgery in the morning, she may not. My anxiety level is through the roof right now.

I'm staying home to pack...I haven't even started for myself or Sicily. I will meet up with them this evening after Patrick's sister, Bett, and his mom arrive from Kansas to care for the other three kids. Last thing we want to do is rush her into surgery if her body is not healthy, but all the tests came back negative from last Friday for any sort of respiratory virus. Patrick and I still hold firm that we think she is reacting to her tumor. That may not be a normal occurrence in most people, but we know that Sicily is not known for doing things "normal!"

I'll update later as more is learned. Thank you for all the prayers!

Kerry
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Old 10-27-2009, 01:34 PM   #399
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Another update from Kerry...

Tuesday, October 27, 2009 3:20 PM, CDT

Hello everyone,

The day started out gray and rainy...outside and in. But now the sun is shining brightly outside and even though I am not with my little pocketful of sunshine, I feel her in my heart. Just thinking of her and her spunk makes me happy!

I visited her preschool at our church this afternoon after she and Patrick left for OKC and I was able to hug many wonderful people...including her teacher. Just knowing how many supporters are pulling and praying for Sicily (and us) increases my strength so much it makes me feel like I could climb Mt. Everest right now! (Where are my hiking boots!) The operating room will be extra crowded tomorrow with all the prayers floating around our little girl.


I talked to Patrick a bit ago and they just finished a precautionary x-ray of Sicily's chest to make sure it is clear of pneumonia. I'm happy to report it was clear! ; ) We knew it would be, but I respect their desire to make sure. It is all in her best interest!

"Surgery is a go!!!"

Sixteen and a half hours and counting. We will check into the hospital at 6:30 am and start the ball rolling to rid our little lady of her unwelcome visitor! I will have the laptop with us while we are in the waiting room. One other thing that Patrick did mention was that when he asked if they were planing on using the same incision as in both previous surgeries, he was told that they would because they want to look at Sicily's remaining left kidney (the two thirds that is left). We're not sure if it is just to look, or if they think something showed up on the CT scan. Time will tell and God is blessing me with patience. I'm praying for it to be a looooong lasting blessing! ; ) We feel the prayers and God is listening...He always is!

Kerry
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Old 10-28-2009, 03:26 AM   #400
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Sicily and her family are making their way early this morning to Oklahoma City for her surgery. Will keep you updated as soon as I hear anything. Please pray for mommy and daddy, too.
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