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Old 05-26-2009, 12:38 PM   #281
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Tuesday, May 26, 2009 12:39 PM, CDT

Afternoon,

I will be a day off the rest of the week as yesterday seemed like a Sunday. Not that I'm complaining...I just easily get confused!

We had a nice extended weekend. We traveled to Enid for the day to attend my uncle's memorial service on Saturday. I even got up and spoke, which is not an area of comfort for me. But through the past eight months, I've learned how to live outside my comfort area, at times. After the fact of speaking at the service on Saturday, I was really glad I had the chance and opportunity to write and read my feelings out loud about my uncle. I watched Esther's dad, Adam, stand up in front of their church with his daughter's casket before him and speak. Thinking of him and his act gave me courage. That is something I'd never be able to do, what he did.

In the Wilm's community, another little boy just earned his wings. His name was Mathieu and he lived with his family in France. They had to travel eight hours to Paris for him to receive treatment. Breaks my heart that a cure could not be found for him. He had the unfortunate diagnosis of anaplastic Wilm's, like Sicily. Yet his seemed to be chemo resistant and the doctors could not find a way to treat it.

Sicily and I just returned from the clinic for her CBC. When nurse Terri brought in her differential results, she commented, "Looks sure can be deceiving" as Sicily played with the cooking stuff behind the couch I was sitting on. Her ANC is 200 (should be between 1400 - 6500). Her white count only came up one tenth of a point to 0.7 (should be between 4.6 - 9.6)...that is what the GCSF shots are supposed to be helping raise, but they haven't done their job yet this time. Her hemoglobin is 7.4 (normal is between 11.5 - 13.5) and her platelets have dropped to 23 (should be between 186 - 348 ...needless to say, she is hovering above needing another transfusion. I'll take her back in again on Thursday and hopefully her shots will have kicked in by then.

You would never know this little girl's numbers are low! She still be-bops around like she has springs in her feet and wings on her arms. We might have let her over do it a bit over the weekend, but she and her siblings and neighbor friends across the street were having so much fun playing outside. They played with water and were in and out of their bathing suits both Sunday and Monday. We were just trying to let her enjoy life a little. We will hunker down and lay a little low the next couple of days to let her little body try and recover.

She's an amazing little trooper! It's hard to believe that a week from this Thursday we will hopefully get to be checked in for an inpatient treatment for the last time. I pray with all my heart that she doesn't relapse and that we don't have to travel this road again! She has been amazing time and time again and I still wonder and am in awe of her strength and resilience...like that of so many of these brave kids who have fought before her, with her and will continue to fight here after. Hearing of another child having lost their life due to the beast of cancer can knock the wind out of my sail for a spell. It is heartbreaking!

We finally made it to the last week of school. Some days it feels like summer break is never going to get here. In a couple of weeks I'll be asking when school starts, though, after days of sibling arguments, rivalry and disagreements. I'm still ready to have them home! Sicily will enjoy having them around! I signed us all up for vacation bible school...Elias and Sicily will attend and Corinthian, Isabella and I will stick around and help in any way they need us. That way, I will be able to keep a close eye on Sicily as she will have just finished up her chemo treatment some time on Saturday right before.

Elias has his surgery this coming Monday. He hasn't said much about it the past couple of days, but he has been telling Sicily that they will be "surgery buddies." In addition to the tubes, I did forget to mention that he will have his adenoids removed as well. His tonsils are a little enlarged, but have never caused him any problems, so we will leave them intact. Don't want to have to go there unless we really need to. Not a fun recovery.

Guess that's about all the catching up for now. I need to go return all the food that we removed from our pantry in the kitchen yesterday...found a few unwanted occupants in there...ants. They're not welcome in our house...especially in the kitchen!!! ; ) Everyone have a good day!

Kerry
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Old 05-28-2009, 12:24 PM   #282
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The way her mom posts are so inspiring and she is so heartfelt! I don't know how she does it all.
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Old 05-30-2009, 07:41 AM   #283
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Saturday bump for precious Sicily
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Old 05-31-2009, 03:23 PM   #284
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Sunday, May 31, 2009 4:24 PM, CDT

Hello,

Please forgive me for not journaling much lately. Sicily is doing fine. Her numbers went up to 4200 by Thursday so we could stop her shots. I, on the other hand, am just full of emotions these days and haven't felt like writing about them, or writing about anything. I should write because I always feel better when I do! But I just haven't been able to bring myself to do it. The past few weeks have been difficult for me for some reason. Probably a combination of Esther's funeral, my uncle's memorial service and just life in general for us. The other three kids are also doing okay. Again, I think I am just over loaded with life, tired of being behind on everything and wanting so much to have things (house, mainly) in order, uncluttered and unpacked! Still not sure that is ever going to happen! It takes having me on the verge of a meltdown for my kids to stop fighting with each other and offer to help around the house. Why does it have to be that way? Honestly, there are times I feel like shipping them off to seperate camps for the whole summer...or I should just ship myself off! I love them with all my heart, but the things they fight over and about can drive a person insane! I know it's a sibling thing, but this momma can't handle much of it these days! I just feel stretched a little thin! I've said and preached time and time again that I will try not to worry about the things I have no control over. But I still have days, too many lately, were my mind won't leave certain thoughts alone and it returns time and time again to all those "what if" scenarios that parents of children with cancer battle all the time. I hate these days when I feel like my strength has leaked out some where...maybe through the tears I've recently shed over the passing of other children. Each time I read the devastating news, even about a child living half way around the world from us who's body succumbed to the beast (precious Mathieu in France), the pain deepens in my heart. I pray, "Please, Lord, I don't want to walk down that path. Please don't lead us in that direction." But in my heart I still feel God's presence and know what ever our path, He will continue to be with us. That is the hardest thing to believe sometimes, but I make myself do it! Otherwise, all of this has no meaning. And for me, it has to mean something! His will is all that matters, when it comes down to it, but I pray for all who have to deal with a "will" that is not "happily ever after!" I pray that peace, understanding and acceptance is found, some way or another, but hopefully in a positive and spiritual growth sort of way! At least, that is what I pray for since I feel so helpless otherwise! And that very well could be a prayer for us someday. I hope not, but it's possible!

Elias has his ear and nose surgery early tomorrow morning. The stress of another child of ours being "put under" even for a minor surgery adds to my worrisome ways right now. I'm sure he'll do fine and I'll be fine once it's over. Then we will prepare for Sicily's final (forever...pray, pray, pray) inpatient chemo treatment. It will be bittersweet if ever an occasion should! I will miss it in many ways. The kids want to help make a poster for her hospital room door that states, "Sicily's Final Chemo!" Doctors, nurses, techs and even total strangers will stop and sign it. And then, next week when we return to the clinic for a CBC, she will get to ring the symbolic "last chemo" bell. I will let myself celebrate in the moment, but return home with a knot in my stomach that won't go away for some time.

Thank you all, each and every one of you, for all the continued love and support. I'll get over my low spot soon and find a way to repair my strength leakage! Love to you all!

Kerry
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Old 06-01-2009, 04:57 PM   #285
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Monday, June 1, 2009 6:29 PM, CDT

Hello,

Elias did fine with his surgery. Patrick has not been feeling well, so he drove separately to the hospital where the surgery was to be performed and left as soon as we were settled in. The doctor came out after surgery to talk to me and said that Elias' left ear was a mess! There is scar tissue built up behind and around the ear drum and he just repeated it was an absolute mess. We are praying that the hearing loss that was recently found during a hearing test won't be permanent, but Dr. Nelson is afraid it might be. We may need to check into further options down the road with that ear drum. Other surgeries may follow. But most likely not until he is around twelve.

So, another long wait and see kind of game. It's always something. I've been playing nurse mom to him all day even though he's doing fine. He deserves some TLC, and he's eating it up...every bit of it. He was a bit fussy coming out of the anesthetic this morning. One of the nurses explained that the pre-med, something they called "happy juice" that was give pre-op, can make them feel really disoriented...even more than just the normal anesthetic hangover. I guess they use it to help calm the child before the surgery, but Elias was already in a very relaxed and calm mood. He didn't need any "happy juice"...he was propped up laying on his side with his head resting on his elbow and smiling at me the whole time. I think he would have been okay. It took him about twenty minutes to relax and settle down post surgery, and then he was ready to go home.

We got there around 5:45 am and were home by 9:15 am. That was pretty good, I thought. He's on ear drops three times a day and an antibiotic four times for the rest of the week. Kind of going to be a juggle act considering I will be in the hospital with Sicily starting on Thursday. Patrick will have to take over. On top of that, Patrick had a temp of 102 this afternoon. Not the best timing! He did get squeezed into the PA at my new doctor's office but the prescription that he was supposed to get filled is floating around in cyberspace somewhere as the pharmacy did not get it from the doctor's office. Uuuuugh! What next?

I have to run and pick Corinthian up from karate and drop Isabella off for tutoring in a few minutes. "Calgon...take me away!" I think I will soak away some stress in the tub tonight, that is if I can stay awake long enough! And I will also plan on sleeping in in the morning...as long as the verbal mud slinging doesn't start too early! ; ) Love you all!

Kerry
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Old 06-03-2009, 09:01 AM   #286
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Lifitng up sweet Sicily!

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Old 06-04-2009, 10:00 AM   #287
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Thursday, June 4, 2009 10:58 AM, CDT

Hello,

Sicily and I are checked into room #312 for her last chemo treatment. Soliciting prayers that this will be the last one...FOREVER! I have said before that it will be bittersweet as I will miss the wonderful people around here that have walked on this journey with us for the past six months that we have been on this protocol. It's still hard to believe that it has been over nine months since diagnosis. It truly has been a roller coaster ride of extreme highs found in the kindness, generosity and compassion of loved ones, friends and even total strangers. The lows have been the constant worries, anxieties and stresses that accompany this type of ride! It has been a life changing and altering experience and we will forever be affected by it! But I'm ready to close this chapter, hopefully, and open a new one with a bright and happy future!

Sicily is in good spirits and is happy that she only has to stay here for a "short" visit! Her numbers are around 2400 and everything that matters (i.e.- white counts, hemoglobin and platelets) are still on the low side and will need to be watched. She has a bit of a cough so she will be receiving some treatments for that. Kids with compromised immune systems are more susceptible to pneumonia, which turns out to be a huge complication. So we'll take some necessary steps to insure that won't happen.

My parents arrived from Enid this morning to help us take care of the other three kids while we juggle the hospital stay and Patrick continues to work. The kids were so excited!

On a sad note for us, our beloved pediatric oncology nurse we love so much down in the clinic, Terri, is moving to Kentucky with her family and we will no longer get to see her when we come in every four to six weeks to have Sicily's port flushed. I'm happy for her, but bummed for us. She has been such an important part of our lives for the better part of nine months. We will miss her so much!

Well, Sicily wants me to sing our "ABC's" song and I am not talented enough to do that and type on the computer at the same time. One could only wish! I'll update more later...maybe after she gets hydrated and her chemo starts.

Kerry
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Old 06-05-2009, 12:25 PM   #288
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Sicily Evelyn Zeka's
Journal

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Friday, June 5, 2009 10:21 AM, CDT

Morning,

Sicily is doing good. She woke up twice in the night to use the bathroom and then slept in until around 9:00. Getting her to eat while inpatient is always a little bit of a struggle, but she has had a little Honeycomb cereal that I brought from home.

We were given the heads up yesterday evening that we may get a visit from some special guests sometime this morning...Miss Oklahoma, Kelsey Cartwright, and Miss America 2007, Lauren Nelson. I got on the computer to show Sicily who these young ladies were, and when she saw their crowns, she gasped and in a surprised voice said, "Princesses?" They did indeed make a visit and these two beautiful and sweet ladies posed for pictures. There were two camera men from local TV stations so we may be on the evening news stations 2 and 8. Patrick says I always get to do the fun stuff while in the hospital. Once the weekend rolls around, things can get pretty quiet around here (according to him). Then a group of contestants competing for the Miss Oklahoma title came to visit, as well. A very sweet group of young women. We were given a chance to go see the Miss Oklahoma competition, but obviously, we couldn't go as Sicily is inpatient. So, they came to us...actually the whole hospital, but as far as Sicily is concerned, they came to see her! ; ) After the parade of scholarly beauties, our child life specialist, Sarah, and nurse, Andrea, brought in "end of treatment" gifts for Sicily from the hospital. Sicily also received her big "purple heart" bead for her Beads of Courage. It symbolizes the end of treatment. It's a very important bead! Can't wait to add it to her strands!

It's been a whirlwind of a morning, but a wonderful one, at that! I think little miss Sicily is tired. For her to actually admit she is really means she is. Chemo started around 3:00 yesterday afternoon so it should hopefully start around 1:00 today. I'm going to take a break and look for some lunch. That Kashi bar I ate for breakfast has worn off. Just for the record, I am doing better...mentally and emotionally. I am enjoying this FINAL hospital stay and am training my thoughts to live every day fully and still trying to push back the worry wort part of my personality! It's still a work in progress for me!

One more thing...while walking the hospital halls this morning, Sicily and were stopped by a father who, not wanting to pry or seem intrusive, asked a little about Sicily. He said his son (one of six children) was just diagnosed with leukemia. I told him not to worry about asking questions...in the "new world" he just entered, he needs to ask them and ask lots...of anybody and everybody. I thought how surreal of an experience that was. We are here ending a journey and he and his son are here just beginning theirs. It made my heart a little heavy, but also continued to strengthen my desire to make a difference in this world that no parent wants to have to live in!

I'll update more later. I have another solicit for prayers that I will be petitioning for another little boy with Wilm's. I'll jump back on her later and explain.

Love to you all,
Kerry
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Old 06-05-2009, 02:34 PM   #289
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SECOND POST FOR TODAY...

Friday, June 5, 2009 3:16 PM, CDT

Hello again...second posting for today,

I wanted to share a CB site of a little fellow named Aaron Burke, but who is also known as "Bubba" to those who know him well. He was diagnosed with bi-lateral Wilm's back in early March and I wanted to add him and his family to our ever growing prayer list and requests. This little guy is absolutely precious and is still in the thick of the battle. You can read a little more about him at www.caringbridge.org/visit/aaronburke

If I could wrap my arms around every one of these families that are having to go through this, I would! Since we are geographically separated by too many miles to do such a thing, I will continue to do the next best (or even better) thing and request prayers. I also would ask to continue to think and pray about Pablo, as well. Having to deal with a relapse is as bad or even sometimes worse than the initial diagnosis. Though the parents may be armed with more knowledge and information the next time around, the realization of what the relapse means is beyond incomprehensible. Please continue to hold Pablo in your hearts. And pray the medical community can find a solution.

Patrick will be here soon to take over with daddy duty. We're not sure yet if Sicily will be able to be discharged tomorrow evening or will need to wait until Sunday morning. We'll start the GCSF shots up again for the last time and will have an appointment next Thursday for a CBC.

Next week will be a pretty busy week with VBS at our church and also taking Elias in for his post-op ear appointment. Sicily and I will also have a meeting with the Make-A-Wish Foundation in regards to a possible news article. We are hoping to attend a lunch at the end of the month at the church in Supulpa who's efforts helped to fund Sicily's wish. We want to be able to thank them in person and express our gratitude for their generosity and thoughtfulness. This church is planning a fund-raising meal every few months to benefit the children Make-A-Wish blesses. This is the part of my daughter's cancer that I have fallen in love with. Being involved with and seeing and experiencing what other people are capable of and willing to do for others! It sends a warmth all through my heart!

One last thing before I sign off...funny how some days I have nothing to write and others I can't stop...our dear friend and fellow Wilm's warrior buddy in Wellington, Kansas just completed his treatment this week, as well. "Yeah, Tanner...way to go!" We have yet to get these two brave souls together, but will hopefully do so soon. Tanners mom, Elise, is working on organizing a walk in Wellington to raise funds and awareness for pediatric cancer. We will do everything in our power to be there!!!

Everyone have a great weekend and enjoy every little blessing that God has bestowed upon us! Life is too precious and sometimes too short to let the small stuff matter too much. I keep working on that thought process on a daily basis, and I continue to keep trying to "practice what I preach!" I'm still a work in progress...Thank the Lord!!!

Kerry
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Old 06-07-2009, 05:56 PM   #290
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Sunday, June 7, 2009 6:33 PM, CDT

Good Sunday evening,

Just wanted to do a quick update. Sicily completed her last chemo treatment yesterday. She also ended up getting a blood transfusion...her fifth since November. I still get goosebumps thinking that five strangers out there somewhere are sustaining our daughters life! It is truly an amazing thing!

The older three kids and I went up to the hospital a little after 8:00 last night so we could all leave one last time as a whole family. We pulled into our driveway about 9:30. Sicily was pinging off the walls...what seems to be her usual reaction after a transfusion. I swear she somehow gets the blood of Olympic athletes! She was hyper and happy. Good to see!

There will not be much down time as Vacation Bible School starts at our church in the morning. This will be the first interaction with her peers that Sicily has been able to have in a very long time. We still need to keep an eye on her as her numbers will drop again, but I'm about to give her a GCSF shot in a few minutes and will continue to do so for the next nine to ten days. I'm ready to not have to give her shots anymore! Even though I handle it okay, it's still not a fun job! We return to the clinic Thursday afternoon for a CBC and to officially "ring the bell" that signifies the end of treatment.

Thank you to everyone who continues to pray for us and care about us. Our story is not over, but hopefully this chapter will end soon with a clear CT scan (scheduled for July 7th) and continue with clear scans every three months. I still have to take a step back from time to time and try to absorb and understand what the past nine and a half months have meant and will mean to us for the rest of our lives! It took nine months for Sicily to develop in utero and to be born. It took another nine months of her short little life to try and save it. I will be praying every day for the rest of my life for her continued good health, and of that of our other three precious offspring!

As a little celebratory gesture, I got permission from one of our oncologists to let Sicily get her ears pierced...something she's wanted for some time. I will wait until her numbers are high and stable, and then I will have to figure out a "safe" and clean place to have it done! I think having her ears pierced will help her to feel "girlie" until her hair grows back.

Well, it's about shot time so I'd better go wash up. Everyone have a blessed Sunday evening!

Kerry
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Old 06-08-2009, 11:53 AM   #291
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Monday, June 8, 2009 12:54 PM, CDT

Good Monday afternoon,

My heart is swollen with happiness today as Sicily and the other three kiddos and I spent the morning at our church for VBS. It was such a comforting feeling for me just being there this morning. I always feel wrapped in a cocoon of comfort and acceptance when I am surrounded by the walls of my faith and the people who share it with me. It's also a very inspiring and moving experience to be around our Religious Education Director, Carol, who just over a month ago suffered a major health crisis. Seeing her back in her element of being around the children and youth of our church is awe inspiring. Honestly, she is a true walking miracle and answer to many a prayers, as I still consider Sicily to be as well! The word "amazing" doesn't cover it!

I am a helper for the pre-K class that Sicily is in and am just soaking up the beauty of watching her be with her peers. She is still very reserved and maintains her usual stoic personality, but behind the serious face, I can tell she is just loving being around other kids and doing "normal" things. I never in my life realized before all this happened how much I have taken the simplest pleasures and experiences of life for granted. Just the fact that Sicily is strong and well enough to be able to attend VBS is a blessing to us! A stranger would have never guessed that Sicily was in the hospital just this past Saturday receiving chemo and a blood transfusion. This morning just felt "normal"...and it felt so good. There is still a small knot in the pit of my stomach...it's the knot of "over protection and worry." I don't know how long it will take for it to loosen and untie, but I'm going forward with all the fun summer plans we have made and trying with all my heart to enjoy every second of it all as we never know what tomorrow may bring!

Elias reported having a great time this morning and Corinthian and Isabella were experienced helpers in the craft room. Corinthian is able to use this activity as credit for service hours for National Junior Honor Society. He is pretty happy about that, and I am just proud of both of them for helping out!

I take Elias to the ENT doctor later this afternoon for his post-op appointment. He will also receive another hearing test. I pray it shows some improvement in his left ear as far as the loss is concerned. We don't get his custom swim molds made until next week so he hasn't been able to enjoy any water fun as of yet. Better safe than sorry!

Everyone have a super beginning of the week! Appreciate and enjoy the "normal" and even "mundane" aspects of the day. Someday, when you least expect it, that "normal" life you are used to may change...but a whole new world may also open up to you! It's all in the eye of the beholder...my glass is half full (and it continues to rise until one day it will be overflowing once more)...what's yours?

Kerry
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Old 06-09-2009, 07:31 AM   #292
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It is so nice to hear that Sicily is done with Chemo and doing so well!!! It is so important to savor the little moments. Enjoy your summer, enjoy life! God bless you all!
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Old 06-10-2009, 06:12 PM   #293
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Good evening,

We are all doing pretty darn good around here. VBS is keeping us busy in the mornings and then we seem to be busy in the afternoons with other things...at least I am.

Great news to report on Elias' hearing test. Both ears are in the normal range. His left ear still "scores" lower than his right, but we are just very thankful that he has no significant permanent hearing loss. We go to have his special little ear molds made next Tuesday.

We have no idea what Sicily's numbers are currently. Even though she received a blood transfusion last Saturday, I have noticed a little bruising on her arms. We'll find out tomorrow. But I'm not concerned as much anymore since we don't need to stay on track for a chemo treatment. She is absolutely loving being at VBS. If one were to watch her, they may not pick up on her true feelings, but I, as her mom, am in tune to that wide-eyed, soaking up every detail look she has in her eyes. She's even attempting to sing a little of the songs in the morning during the opening. She's still not into doing any actions, but she is picking up on what they are. After dinner this evening she wanted to sing and show daddy one of the songs. It's so fun and beyond enjoyable to see her this way. When we pulled into the parking lot this morning, she asked if all her friends would be there again this morning? I told her they should be. She takes pride in "having friends!" Such a simple thing we normally may take for granted. But when a little child is almost to the point of being quarantined to protect their health, friendships are a luxury that can't be afforded. She can afford them now!

I pray that because of her young age, so much of what she has been through will only be a memory we share with her. Wouldn't that be a blessing. The rest of us are forever changed, but maybe she won't have to be as affected. She knows she only has part of one kidney...but she will also tell you, quite matter of factly, that she no longer has cancer because she got rid of it. "Darn right, little girl!!!" I love to hear her say that!

Sicily and I went to the Make-A-Wish foundation office yesterday to meet with a reporter and talk about her wish and what it meant for her to receive it. I don't have any idea when the story will run in Tulsa People, (I think) and we have yet to meet with the photographer. One thing I can say is how incredible I think the MAW foundation is as an organization. When you see the pictures that line the walls surrounding this little office, you have a sense of "Wow, look what they have done for all these special little people!" Sicily included. I proudly handed the director checks written by our family members who gave in honor of Sicily's 4th birthday. They were so sincerely thankful (as I am to all of you who were so thoughtful) and I know it is put to such good use!

One more little tidbit before I sign off. Fla-Vor-Ice brand popsicles is going to start printing a gold ribbon (the universal symbol of childhood cancer) on their product box. They are the first coperate company to help bring awareness to childhood cancer. We hope the first of many, but we are all overjoyed and saying in unison, "FINALLY...and THANK YOU!!!" So go buy some Fla-Vor-Ice!!! ; )

I'll try to post a picture of the bell ringing, treatment completed, still bald, but still beautiful little girl sometime tomorrow. We plan on going out to dinner to celebrate. HIP, HIP, HOORAY!!!

Love to you all!

Kerry
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Old 06-11-2009, 06:56 AM   #294
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Default Praise God!

I'm growing 10 inches for locks of love for the next little girl who needs it!

God bless you and your family!

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Old 06-11-2009, 09:21 AM   #295
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I'm growing 10 inches for locks of love for the next little girl who needs it!

God bless you and your family!

Jane


Jane, how wonderful - what a blessing you are!!
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Old 06-11-2009, 03:02 PM   #296
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Hello all,

Sicily rang the "end of treatment" bell at the pediatric oncology clinic at approximately 1:45pm. She was surrounded by the wonderful staff who have cared for her these past nine and a half months (minus the time spent in OKC). She was her usual shy, stoic self and needed a little help from daddy. But the bell rang, none-the-less. I am letting myself live in the moment and be happy. We will continue to live one day at a time for a very long time!

Reality still knocked at the door of my mind when Sicily's CBC differential came back and her ANC is at 100. Her platelets are low and I had the suspicion they might be from the little bruises present on her arms. I asked if I should keep her home from the last day of VBS, but was told she could go. I will just keep her under my wing, literally, tomorrow morning and watch her closely. This week has meant far too much to her to not get to finish it.

I'm a little on the exhausted side...I could never be a preschool teacher. My hats off to them! They have to have incredible patience, that's for sure!!! Fortunately, I'm with someone who used to be a preschool teacher, so I'm just a back-up. But along with the energy level that accompanies a group of four-year-old preschoolers, is the priceless innocence of their knowledge. It seems no matter what question they are asked, they all seem to answer with the same response almost every time..."Jesus!" That actually made me stop and think...isn't that the answer to every question? Can you believe how smart these little people are? What if we could answer every question that has been posed upon us with that simple of an answer? "JESUS!" (And not in a slanderous way!!!)

Sicily and I will return to the clinic next Monday morning for another CBC. If her numbers have come up, we will not be making our usual treks to the clinic once or twice a week anymore. We'll be reduced to going in every five or six weeks to flush her port, which will stay in for nine more months to a year, just in case. The next big calendar day will be her first off-treatment scan scheduled for July 7th. I will do my best to ward off the "scanxiety" beast that I'm sure will try to find me, but again, I will try even harder to live and enjoy each and every day between now and then.

We are going out to dinner this evening (a rarity for us) to celebrate a little. I still find myself taking deep breathes and exhaling them slowly, still holding a little bit back...that has been part of my daily coping mechanism for so long now, it may never go away! Not that it really needs to! I just pray this is the real "END"!

Everyone have a great evening!

Kerry


You may see the picture at Sicily's Caringbridge site
http://www.caringbridge.org/visit/sicilyevelynzeka
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Old 06-12-2009, 07:11 AM   #297
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Default Thank you, Jesus!

Kerry,

We all join in your prayer! Have a wonderful dinner tonight! Live each day! Enjoy life! Dance as if no one were watching!

God Bless you, sweet, little Sicily and all of your family!

Hugs,
Jane
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Old 06-12-2009, 10:27 AM   #298
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A No-Mo'Chemo bump for Sicily
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Old 06-15-2009, 09:20 AM   #299
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Bumping for sweet Sicily
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Old 06-15-2009, 12:47 PM   #300
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Monday, June 15, 2009 12:41 PM, CDT

Good Monday afternoon,

Sicily and I returned just a bit ago from her appointment at the pediatric oncology clinic for a CBC. Her numbers are up to 4300 so we get to stop her GCSF shots. Patrick made the comment last night about it being the last one I might need to give her. It's actually a weird feeling having so many "last" events and it being a good thing. Today, though, I felt a sense of sadness since we won't get to see our nurse, Terri, anymore. She and her family will be on their way to Kentucky soon. She will be dearly missed! It's one thing for us to be done and not walking through the clinic door every week, because we know if we want to visit we can. But knowing she will not be there anymore breaks my heart. She was there from day one. She sat by Dr. Hum in the waiting room that Friday afternoon back in August when Sicily's diagnosis was being explained to us. I guess I can relish in the fact that her leaving and Sicily's end of treatment were timed just right! I wish her well!

Sicily is her usual "pinging off the walls" self today here at home. The other three kids are at church participating in Totus Tuus...which means "Totally Yours." It's described as "Vacation bible school with a punch!" It's for first graders all the way up to high schoolers and it's lead by a team of young adults and college students. It's a really cool program and our kids love it! Feels like school is in session here at home since it is just Sicily and I. The older kids are gone from 9:00 to 3:00 all week. I'm trying to get little miss hyper pants to lay down and take a little nap. No luck so far!

I will admit that it's going to feel strange to not look at the calendar to check on appointment times. It's a good kind of strange, though still a bit on the scary side. Patrick and I are still very slow to test the waters, but know we will continue to live each day "in the day" and continue our prayers to God for Sicily's complete healing. There is an underlying feeling of the possibility that the rug could be pulled out from under us...but like my cousin Marlene wrote in her guestbook entry this morning, "All each of us has is this very moment of this very day!" I couldn't have said it better myself. Not one of us knows if we will be here tomorrow. Even though I have the knowledge of what "might" or "could" occur in our future tomorrows, I will beat down the negative thoughts and live...today! Leaving the clinic I had to make a return appointment just so Sicily can get her port flushed...in mid August. We will be in OKC for her CT scan in July, so her port will be taken care of there. It was definitely a strange feeling!

As my mind continues to ramble, I keep thinking about what Father Joe said yesterday during mass. He talked about reactions, I guess you could call them, to the sufferings and tribulations in our lives...either that of our own or that of the world around us. He said we react in one of two ways: we turn inward and rely on our own devices, or we open ourselves up to God's presence and allow Him to handle our needs (not Father Joe's exact words...but that was his point, I believe). I have seen and felt and been witness to both ways. Personally, like I've said before, I've clung to God even when at times I felt my grip slipping. I learned that even if I let go, He never will. So, I won't as well. I was witness to watching how Esther's family dealt with this unthinkable, unimaginable, unforgivable sorrow...by continuing to glorify God in the midst of their incredible suffering. Even as their own flesh and blood took her last breath, they found ways to rejoice to Him.

I've read several other CB sites of children who, after their passing, their parents journaled that they are no longer on speaking terms with God. They are angry at Him. My heart aches even more when I read those words. But I also can't help to think that at least they still acknowledge His existence if they are professing their anger towards Him! I can't even begin to know exactly what they are going through. I've been close enough to imagine it, but to not maintain a relationship with God...especially when their child is now living in heaven directly beside Him...I don't see the point. Anger is a very important step in the healing process. Who, what or where the anger should be directed, I don't know, but I just wish it wasn't towards God. There are so many questions that accumulate during our lifetime. Someday we will be blessed with the answers! Hope, trust and believe! That's all my simple mind can do!

I am planning to keep this CB site open as long as we need to...basically as long as there is still information to share about Sicily, which will most likely be quite some time. I most likely will not be journaling as often only because we will be so busy "living" this summer and I will have to sign up for a time slot on the computer since all the kids will be home. We must all share and take turns...mommy included!

All I can say is that we would not be where we are today and be feeling, thinking, acting or living as well as we are if we didn't have the tremendous support we have received from each and every one of you! I have just one more little tidbit to add. So many along the way have wanted to help in one way or another...and so many have. This is a big "help" to others, and possibly we may need it ourselves one day. I just signed up to be a potential bone marrow donor. There is usually a fee to register to become a donor, but until June 22nd, or until funds run out, the fee is being waived.

The campaign is called, "Be the Match" and there is more info on the website (I just typed www.bethematch.com) and it is very important to read over all the information. Along with donating blood, which I know many have done in Sicily's honor (and thank you so much)...this is something else that is very much in need. It's not as easy or as simple as donating blood, so you need to think your decision through carefully and talk it over with family members, but it could truly be the difference between life or death for another child! Just wanted to plant that seed and hope some one else out there might want to join in!

God bless each and every one of you! Enjoy today, this very day!

Love,
Kerry
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Old 06-16-2009, 05:43 AM   #301
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I have Sicily another card ready to go in the mail today, it looks just like her, bright yellow, full of sunshine. God Bless her and entire family.
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Old 06-16-2009, 07:46 AM   #302
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I have Sicily another card ready to go in the mail today, it looks just like her, bright yellow, full of sunshine. God Bless her and entire family.


Thanks so very much, you are such a sweetheart!!
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Old 06-17-2009, 03:16 PM   #303
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Wednesday, June 17, 2009 2:28 PM, CDT

Good Wednesday afternoon,

All is well on the home front. Sicily is enjoying life like a four-year-old little girl should be. Other than the fact that this morning her choice of pretend play was of that being a doctor to patient mommy. It's funny and almost surprising how much she knows and remembers about the medical field. She placed her blue, yellow and red plastic Fisher Price stethoscope on my back and told me to take deep breathes as she moved it in a square shape. She checked my ears and made me say "auuuugh" for a quick look into my mouth (kids on chemo often times have mouth sores as one of the side affects). When she was done, she gave me a sheet of paper and said, "Here are your numbers... kinda low!" At least she didn't hand me a bill! ; ) Even if she had, I would have paid whatever it cost because these little experiences are priceless. It amazes me how after all that these kids go through, a lot of them don't seem too scared by the actual medical field. Sicily loves to pretend to be a doctor or nurse and care for those around her. Case in point, there was a young twenty-five-year-old nurse, named Swati, at the pediatric oncology clinic who herself was once a patient. She grew up to help take care of other children as she had once been taken care of. What an absolute inspiration. My heart breaks to say that on June 9th, she passed away from an illness. I pray her family knows what a gift she was for those she worked with and for!

Just wanted to jump on here for a short bit...there are still days I could sit and type for hours...sharing stories and memories of and about this whole experience. Some mornings I still wake up and think, "Was this all a dream?" But then my little baldy baby bebops into the room, jumps in the bed and wraps her little arms around me and I remember it is still truly our reality. I can easily sum it up in a quote I once read from Rick Warren, "This past year has been the greatest year of my life, but also the toughest!"

Happy moments, PRAISE GOD.
Difficult moments, SEEK GOD.
Quiet moments, WORSHIP GOD.
Painful moments, TRUST GOD.
Every moment, THANK GOD.

Love to you all,
Kerry
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Old 06-21-2009, 01:59 PM   #304
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A HAPPY FATHER'S DAY BUMP!!
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Old 06-24-2009, 03:49 AM   #305
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Will be heading out to Oklahoma in 17 days to visit with sweet Sicily and her family!!
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Old 06-24-2009, 04:58 AM   #306
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Give her a hug for me!!!!!
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Old 06-24-2009, 05:35 AM   #307
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Can you PM me her address.. LOVE to send her a card.. Lifting her up in prayer..

Michelle
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Old 06-24-2009, 07:07 AM   #308
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Give her a hug for me!!!!!


Will do!!
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Old 06-24-2009, 07:12 AM   #309
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Can you PM me her address.. LOVE to send her a card.. Lifting her up in prayer..

Michelle

Michelle, just sent you a pm with Sicily's address.... btw, great picture
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Old 06-25-2009, 09:18 AM   #310
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Thursday, June 25, 2009 10:19 AM, CDT

Hello all,

I am so sorry...when I said I would not be posting as much, I didn't intend to slack off this bad!

Sicily is doing great. She likes to rock the boat a bit around the house and squabble with her siblings more than I prefer, but she is just letting us all know she is here and is still as strong as her Grandpa's old leather boots! Everyone will probably start getting along good about the time they need to return to school in August. The older kids go back on August 12th...that will be here before we even know it! Wow!

We spent Father's day weekend adventuring out on a camping trip...something we haven't done for many, many years. We were invited to use land encompassed with numerous ponds stocked with various fish. Elias has been wanting to go fishing and camping for so long that Patrick decided that we just needed to do it. So we did. We made it a short trip just to test the waters on how well the kids would like and handle it. I worried the most about Isabella as she is not one to like the outdoors as much as Elias and Sicily do. I knew Corinthian would pretty much just go with the flow. He probably enjoyed the drive out in the country the most as he played with my GPS (the one I got for Christmas and have yet figured out how to use) and proceeded to mark our location and titled it "camping in the pasture." Which is exactly what we were doing. But this wasn't just plain ordinary Oklahoma pasture. It is surrounded by hills, ponds and trees and is just absolutely breathtaking. The land owner was about the only other human being on earth who knew where we were.

I was hit by a little fear of that thought when night fall came as I realized if we had an emergency, we most likely would not be able to navigate our way out of there in the dark of night. I said a few extra prayers to keep any poisonous snakes or spiders at bay and away from our little campsite. We did not completely rough it as we did have a little portable camp grill to cook on...hot dogs for super and scrambled eggs, bacon and sausage for breakfast. One of my favorite things about camping is the smell of breakfast wafting through the air in the early morning. There is just something about that. I guess it brings back many fond memories I personally have of growing up and camping with my family. The winds were a little on the high side to have an actual camp fire...maybe next time. Not to mention we were already sweltering in the summer heat! One little thing I did have a bit of anxiety over was having to teach the girls how to use the bathroom outdoors. To my surprise, they embraced the idea and thought it to be an adventure and did not complain once. I think they actually enjoyed the novelty of it and they did great. I was so proud of them! Funny thing to be proud of, but I was.

Everyone took a turn at fishing, but Elias was the only one who succeeded with a total of three small fish to his name. They were all little fellas but that didn't matter...the smile on his face was equal to that of one who might have caught "the big one!" He was happy and that was all that mattered.

I can honestly say that as a whole I probably slept less than a couple of hours in the night. Between the heat, the mooing of cows, the yelping and barking of coyotes and the tree root running under my back, I had a hard time resting. But it was still worth all the prep work and time planning to do this together as a whole family. We plan on going again, but maybe closer to fall so the weather won't be as much of a factor!

Time is surely ticking by faster than I can even realize that it is. Sicily's first OT scan (off treatment) is practically right around the corner and with life being so busy, I haven't felt the "scanxiety" yet. YET! It will appear, but I refuse to let it affect or alter too much of my time before hand. Besides, is there really anything I could do differently that could affect the outcome of that day? NO!

If Sicily is to relapse this soon, which is possible, we will hunker down and deal with it. If she continues to be disease free, we will quietly rejoice and continue to enjoy life for three more months until the next scan. Nobody knows what their tomorrow will bring. Nobody aboard that train in Washington D.C. knew that their number would be called that day. We felt an extra sense of worry and concern as many Wilm's parents were in D.C. earlier this week for "Reach the Day" and we prayed extra hard that none of them were affected by the accident, which I heard none were. Continue to enjoy and live in today, this very day. Yesterday is gone and tomorrow is yet to be. Live today! Just today!

God bless you all!

Kerry
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Old 06-26-2009, 10:20 AM   #311
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Friday, June 26, 2009 9:20 AM, CDT

Morning,

I just wanted to jump on here quickly as the kids and I will be heading out shortly to attend a fund-raising lunch at the church who raised the money donated to Make-A-Wish for Sicily's play equipment. We want to thank them in person and help with the next child's wish.

My heart is very heavy and down right sad as I checked the blog of our little friend, Pablo, this morning as I always do and read the title, "No More Fighting." The state and condition of this little fella's body is deteriorating fast, and I am in complete shock over the turn of events. As his incredible father blogged, "The truth is, Pablo is dying." I can't tell you how painful it is to read those words.

Please hug, love, forgive, accept...what ever it is that needs to be done to those you care about most around you! Life is precious and sometimes way too short. Pablo has lived more in his six young years of life than many of us seven, nine, or eleven plus times his age! He is beyond awesome!

And I am still, against all medical knowledge, holding out for a miracle! You can read more about this phenomenal kid and his family at http://getwellpablo.blogspot.com. Their focus right now is to make Pablo as comfortable as possible and continue to love him with all their hearts, minds and souls...something they have done from his birth!

Love to you all!

Kerry
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Old 06-30-2009, 05:01 PM   #312
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Eleven days left before heading to Oklahoma to see sweet Sicily and her family!
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Old 07-01-2009, 02:23 PM   #313
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Wednesday, July 1, 2009 3:31 PM, CDT

Afternoon all,

I have been away from the computer for a few days and I am sure a lot of you are already aware that our little friend in California, Pablo, passed away on Saturday. He was six years and six days old. He celebrated his last birthday with his family on Father's Day. I am still in shock and over-whelmed with the thought of another bright little light being extinguished. Another family is laying their sweet child to rest today. It hurts so much!!!

All the while today, local radio station K95.5 FM here in Tulsa is holding a radiothon at the hospital which will benefit the children it serves in this area. If you feel moved to do so, they are accepting donations (through the Children's Miracle Network) until 7:00 pm CST. You can call 918-502-5437 or log on to www.saintfrancis.com to make a secure tax deductible gift in honor of our brave little super hero, Sicily. She is one of the poster children for this campaign and her picture, along with a couple of handsome other super hero's, is all over the hospital and other areas. I also did a pre-recorded interview that was played yesterday, I was told. I've been listening to the station most of today and don't know if it's been played again. So many of the other story's I've heard through out the day just make the tears stream down my face! We made a visit to the hospital today to show our support (Sicily was in costume) and we still feel so very loved! I can't even explain how important that place has been to us and to so many others! You can even make the donation in memory of Pablo, Sicily Zeka's little friend who's funeral is today.

I'm behind on about everything around here so I just wanted to make this quick.

Love to you all!

Kerry
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Old 07-02-2009, 09:34 AM   #314
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Thursday, July 2, 2009 8:00 AM, CDT

Morning,

Today I am already starting out feeling very emotional. Partly because of the thought of Pablo being laid to rest yesterday, and partly because of an incident with Isabella last night. She began to cry out of the blue and proceeded to tell Patrick and I about something that happened while she was a helper a few weeks ago at Vacation Bible School. She said she over heard a couple of teenage boys, also helpers, laughing and joking about Sicily and her appearance. It upset Isabella so much she said she just sat there and cried. She is such a soft soul that could never say anything directly back to someones face when experiencing something like that. I'm upset with myself for not preparing her for such an occasion, but I guess I was naive enough to think I wouldn't have to. These are some of the effects that most people don't see the siblings of pediatric cancer patients having to deal with.

I wish Isabella had had the courage just to tell me about what had happened that day so I could have helped address the issue instead of her having to carry it around so long and it weighing on her so heavily. I could have talked to the boys or asked our Religious Education director to, which probably would have been a better choice as I might have entered into "defensive momma mode" and laid into them a bit too much.

Patrick experienced a little something for the first time the other night as he took Sicily with him to the grocery store. He witnessed, rather out of the corner of his eye, a parent putting their hand over their child's mouth before they were able to blurt out their observations. The minute the parent removed their hand, the child still, very innocently posed the question, "but she had no hair?" I, myself, have shied away from sharing explanations of Sicily's appearance to young children very often. I guess I had hopes maybe that is a role their parent would take on. I don't want to scare other children with words like, "her hair fell out because of some medicine she had to take to kill the cancer in her body..." That could very well affect a child's thought process about medicines. We weren't given a hand book at diagnosis that would tell us all the little and not so little things we would need to expect while traveling the road of pediatric cancer.

We have most often than not been surrounded by love and support. But there have been an occasion or two of happenings that really did not need to happen. Case in point...a young man, a sixteen year old teenager who had very bravely battled the beast for over two and a half years passed away in May. His mother is beyond distraught and is dealing with her loss the best she can. I have watched and read the support she has received on his CaringBridge site, until just the other day someone, some coward of a person, anonymously wrote something just to be cruel. They said, "I knew so and so in grade school and he was no angel!" What purpose did that serve? Why was that necessary? I just don't get it! The pain of losing someone you love has to be indescribable, especially when that someone is your own flesh and blood...your own child. Even just the thought of losing a child due to cancer is hugely painful and weighs heavily on the mind each and every day! And then to have to deal with the very few minuet thoughtless people out there can be compounding!

I keep telling myself if I ever experience something again like what Isabella did, or am faced with the curious innocence of a young child, I will respectfully and gently explain the questions of "why" and "how come!" When I am in public with Sicily, which has become more frequent now after the completion of her chemo treatments, I walk beside her with such pride, as I do with the other three kids, as well. To have watched and experienced the life we have all had to lead in the past ten plus months, I am in awe of their resiliency, their courage, and their stamina! But the journey is not over, the affects are still being felt, and we are still having to deal with them!

Sorry for rambling so much this morning. But when I woke up and got out of bed, I had the strong need to be able to vent a little! Thanks for the ears and the always reliable strong shoulders! I feel better now and can get on with my day.

I think part of my agenda today will be to have a longer discussion with Isabella about coming to me when something is bothering her so much. I think she feared we would be disappointed in her for not sticking up for or defending her little sister, which we would not have at all. That should not have to be her role, especially when she herself feels so vulnerable. I just want to know when it's happening so I can help her through these tough emotional times!

Every one have a great day. To some I know today may be an "early" Friday. Please have a very safe 4th of July weekend!


Love to you all!

Kerry
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Old 07-06-2009, 10:48 AM   #315
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Monday, July 6, 2009 10:34 AM, CDT

Good Monday morning,

Hope everyone had a wonderful and safe 4th of July weekend! We enjoyed ours very, very much thanks to the hospitality of family! "Camp Benway rules!" That's Patrick's sister and brother-in-law's house in Enid that is truly a unique get-a-way. We are made to feel like we are at a resort! We can't thank them enough!

We are all doing good and are just truckin' right along day by day. I had a lot of wonderful feedback and support on my concerns about Isabella last week! Thank you all! One of my dear friends explained it well when she emailed me that "kids at times make fun of what scares them!" My heart actually hurts for the boys involved and I wish now more than ever they could understand the site that was before them...the battle that Sicily endured and overcame!

My friend also wrote about seeing a picture of a ten or eleven-year-old boy who had his sister write on his bald head, "because I'm on chemo!" Believe me, there were many times I felt the urge to do that. Like I had the desire to constantly were a t-shirt that said, "be nice to me...my daughter has cancer!" But what gives me the right to feel I should be treated any different than any other human being walking the face of this earth? We all are dealing with some sort of trial or tribulation at some point in our lives! Because we don't know the who's, what's, when's and how's of everyone around us, we need to just make it a point to be nice, considerate and mindful as much as possible.

Everyone is entitled to have bad days every once in awhile. But try not to take it out on others who's day may be even worse than your own! I know I am guilty of doing that with my kids and husband...the very people I want to share every ounce of happiness with. When I'm having a bad day for no particular reason, my actions turn their days bad, as well! That's a work in progress for me to try and change...I spend a lot of time apologizing when I catch myself doing that! At least I am catching myself!

I could be having a bad day today because first thing this morning I received a call that we would not be able to meet with the oncology doctor in OKC tomorrow after Sicily's CT scan at 11:00 like had been planned. We are used to getting an unofficial result hours after the scan is completed instead of waiting days like many parents have to. It's all about what a person is used to. The appointment with the doctor had to be rescheduled until next Tuesday. That is a long wait. We will try and see if our brother-in-law, John, can get his hands on the radiology report before then. If not, we wait. It's not like we have any control what-so-ever over the results!

If Sicily is to relapse and do so this soon, there is nothing we can do at this very moment and there is nothing we would have done differently with the decisions we've had to make in the past ten months. This has all been a very strong lesson in patience for me, personally! Unfortunately, I'm not a very quick learner. I'm a little on the stubborn side, as well...still working on that one, too ; ) So, we changed our plans to have family stay with the three older kids tomorrow and all will just tag along with us for the scan. It's a pretty quick up and back as long as they, the radiology department, are running on schedule. Again, something beyond our control! I'll be keeping my fingers crossed, though! Other than all that, we are prepared for tomorrow's event.

I have joked many times with Patrick and explained to many family members that I think there is no possible way cancer would want to return to Sicily's body...she is too feisty, ornery and down right mean sometimes for it to want to take up residence there again. The cancer would stand little chance of getting any work done in her system, especially in the area of the lungs because it would be constantly distracted by all the yelling this child does. I'm not kidding. Sicily is not only seen, but she is heard...for blocks...maybe miles around! ; ) So, that is my personal observation!

We have unfortunately learned that there are no tell tail signs that a child has relapsed...no obvious symptoms. In fact the opposite has been true more times then not. The kiddos have felt better and more energetic than ever when the devastating bomb is dropped! That's why I refuse to let myself get worked up about all this. Nothing I can or could do will change what may or may not happen! We have a life to live...cancer or no cancer, it still marches on. And I don't want to miss the parade! It's the only one there is for us! "Seventy-six trombones led the big parade, with a hundred and ten cornets close at hand.."

Everyone have a great day!

Kerry
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Old 07-07-2009, 06:38 PM   #316
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NED - NO EVIDENCE OF DISEASE!!! THANK YOU, LORD!!


Tuesday, July 7, 2009 7:38 PM, CDT

Evening all,

We have an unofficial NED (no evidence of disease) to report! YEAH! One down, dozens to go...but we'll take it! I say unofficial because we don't have a hard copy of the CT scan and x-ray reports in front of us. But good 'ole Uncle John came through for us once again and spoke with both radiologists who personally read them. That's more than good enough for us.

I'm tired and will hopefully sleep well tonight with visions and dreams about a little short haired girl attending her first day of preschool. I called her downstairs after Patrick spoke with John and told her that her cancer has not returned and that she will be able to go to preschool and she excitedly said, "Now?" I had to tell her that school won't start for a little bit longer, but it will be soon. She said, "Yes...thank you" and scrambled back up the stairs to pester her brother Corinthian and his friend (they are heading on a day trip tomorrow to an amusement park in OKC with our church youth group).

Corinthian accompanied us today and kept Sicily and I company (and sane) while enduring all the waiting. We left at 7:15 this morning and did not return until about 4:30. Even though more than half the time is spent sitting and waiting, it is tiring, as funny as that sounds! But Patrick and I let ourselves exhale a bit and we high-fived the good news. Barring any unforeseen surprises, we will spend the next three months living life as normally as possible. It's a good feeling!

Sicily's very tan little head is starting to show the very early beginnings of hair re-growth. It's super blonde, almost white, right now. That's partly due to it being new growth but the sun may also have something to do with that! She is an outdoor girl. We are constantly applying sunscreen to her shiny little bald head. It will be fun to see her hair return! I smile just thinking about it!


I'm worn out so I will sign off for tonight. I found the link to the article that was written for Tulsa People about Sicily and her Make-A-Wish. Hopefully I will type the link correctly and it will work! http://www.tulsapeople.net/index.php...it=10&Itemid=2

Love to you all!

Kerry
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Old 07-09-2009, 06:55 AM   #317
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Will be meeting Sicily and her family in person soon!!
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Old 07-10-2009, 03:55 PM   #318
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Friday, July 10, 2009 11:26 AM, CDT

TGI Friday,

We are all doing pretty good. Sicily woke up this morning and after coming down stairs and wrapping her arms around me as I picked her up, I noticed her little body felt warm. I took her temperature and sure enough, she had a fever. I took it several times with a couple of different digital thermometers and it varied between 101.4 and 101.9. The girl made it all the way through her treatment without ever having a fever. Now that she is done, she has one. I called the ped/onc office and spoke to one of the nurses. She said since we don't have to worry about Sicily's counts being low, we are given a little more flexibility in the situation. She advised me to give Sicily one dose of Tylenol, and only one dose. Pump her full of fluids the best we can and just observe her. Apparently the Tylenol has kicked in as Sicily is upstairs right now raising cane with her siblings. She's already consumed a couple of popsicles and some water so she is doing what she's supposed to be doing. I'll continue to take her temp and monitor her through out the day. If it should happen to return, I'll have to probably take her in for cultures. It's not a big deal, but just kind of strange since we aren't used to dealing with this sort of situation with her.

I was going through some of the emails I have sent to myself in recent months. Yes, I email myself. On those days where the thoughts in my head were numerous and flowing faster than a rain swollen river, I have been known to resort to emailing my ramblings to myself to deal with them at another time...like now. This was one I wrote back in April. Looking out at the construction occuring through my kitchen windows, it jogged my memory that I had written something about it.

A house is being built right behind our house. Literally feet away from the fence we will soon be constructing. We have enjoyed unobstructed views of a beautiful lush greenbelt from every window facing southwest since moving into this house a year ago in June. Now a house is being built. A big house. A tall two story house. Is there anything we could have done to prevent it? Sure...we could have needlessly bought the very expensive lot behind our house (if we wanted to go seriously in debt). For what purpose? Selfishness! But that lot did serve a purpose for us in the last year. It was our landing pad for those couple of days when we had the perfect ice/snow mixture to carelessly sled and make adventurous attempts at snowboarding down the little hill that resides in our backyard. Memories were made. It was where we launched a couple of kites on one of those incredibly windy Oklahoma days. More memories were made. It created a sense of openness and endless space for our backyard, which is odd shaped and not very deep. Now that backyard will be clearly marked by a fence. Not that we are being rude...it's a privacy issue for both home owners. But is it really that big of a deal? We lived, loved, played and enjoyed what was there while it was there. I can still see and delight in the greenbelt out of several of our southwest facing windows, especially upstairs. We never know in life when a house is going to be built that will obstruct our perfect views and our cherished activities. We adapt and learn to appreciated what we had before and be thankful for it. And we look for ways to make something good of the new. What about the people building that house? Our future new neighbors? Maybe we will become friends and we will be so thankful they built a house right behind ours. A house is being built behind our house. Some things come to an end while others just begin. Adaptation!!!

Everyone have a good summer weekend!

Kerry
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Old 07-10-2009, 05:06 PM   #319
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Friday, July 10, 2009 6:23 PM, CDT
Sorry...second posting for today,

Sicily awoke from her nap this afternoon with the fever back in action at 102.2. I called the ped/onc clinic again and they had us go to the day hospital for blood cultures. I confessed to Dr. Hum, Sicily's oncologist, that I wasn't sure if I was to call her office or that of our new pediatrician. Because Sicily still has her port and will do so for some time, she prefers to continue to over see her care. More than fine with me!

Sicily's port is one of the concerns when dealing with a major symptom-free fever. There could potentially be an infection in the line, a line that goes directly into her heart. So, fevers over a certain degree need to be evaluated. And that's what we did. Sicily has had a very mild cough for the past month or so. Nothing that has caused us to be very concerned. She still takes a probiotic called Bactrim every weekend that is supposed to guard her lungs a bit, but it's not steel reinforced protection.

When listening to Sicily's chest, Dr. Hum reported hearing a bit of a "pop" sound, so she ordered an x-ray, as well. She also had an intravenous antibiotic administered to Sicily which will be good for the next twenty-four hours until the cultures come back. We pray that nothing grows and her fever subsides to nothing that needs to be worried about. Sicily's port is still needed for future scans, but if we start to have problems with infections, it may just have to be removed. All that really means is that for future CT scans, she will need to have an IV started. It will eventually come to that anyway further down the road.

I know the doctors will most likely try to figure out the cause of the infection first before sending her straight to surgery. I just like to be aware of all the "ifs" scenarios just in case. That's how my mind works best...mental preparedness. All this being said, I was relaxed and not too upset with today's event. Just baffled that we made it all the way through a pretty strong chemo regimen with out any complications, but have to deal with some after the fact.

One thing that did create a little knot in my stomach was that the same nurse who started Sicily's IV for her first CT scan back on August 22...the scan that revealed her cancer, was the nurse we had today. I had a few seconds of flash back but then let out a sigh of relief remember how sweet and gentle this lady was back then. Have I mentioned lately how much I love our Children's Hospital here and all it's staff? I'm probably becoming one of their biggest advocates. They do their job and they do it right...full of care, compassion and expertise. What more could a parent ask for?

So now we play the waiting game. Again, out of our control and that of others. Pray for this to be something simple and easily remedied! Once a person becomes the parent of a pediatric cancer child, the term "hypochondriac" is a well deserved title. I have tried to carefully walk the road of not over reacting to every little cough, bruise or low grade fever (which today was not), but little voices of worry still float through my head.

Still living day by day and thankful for the continued prayers. God bless you all and everyone have a great weekend. I'll update if we find out anything.

Kerry
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Old 07-12-2009, 09:36 AM   #320
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Sunday, July 12, 2009 10:38 AM, CDT

Hello,

Patrick and Sicily are on their way to the hospital. Sicily continues to run a high fever in between the Tylenol doses we've given her. It's been over 103 several times. I spoke to the ped/onc doctor on call and he said nothing has grown on her cultures and her x-ray looked okay. But since her temp is so high, he wanted her brought in and admitted. We need to figure out what is going on with her little body!

We're supposed to head to Florida next week for The Lighthouse Family Retreat, a get-a-way for families dealing with pediatric cancer. If we can't get Sicily's fever figured out, we won't be going. We've been planning on this and looking forward to it for so long. Please pray this isn't anything major!!!

On top of our vacation plans, our dear friend, Caterina, whom we met through the Cole's Foundation, flew from Maryland to Oklahoma yesterday just to meet Sicily and her family. We WILL get together, but it may be in a hospital room versus our home. She has been a constant support to us through out this whole journey. She is a blessing and I can't wait to hug her!

I will update later if and when anything is figured out. Meanwhile I need to pack a suitcase for myself so I can spend the night with my little warrior once again in the hospital. I'm fine...actually looking forward to seeing some beautiful faces! Didn't think it would be under these circumstances! We promised we would come visit them! They just can't seem to get rid of us! ; )

Have a blessed Sunday!

Kerry
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