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Sicily is doing good and is just going with the flow being inpatient. Having a fever means no walking the halls. She is on an antibiotic that will take at least forty-eight hours to show any effects. So we know we will be here until at least Tuesday.
A CT scan of the chest has been ordered and will occur sometime tomorrow morning. I need to back up a bit and explain what happened, or didn't happen last Tuesday.
It was to our understanding that Sicily was to have a chest CT as well as one on the abdomen. I double checked with the radiology tech what was to be done, and she said that it was only supposed to be a pelvic CT. I began to cry as this was a very important scan, not like any of them are not, but we really wanted to know that Sicily's lungs were clear as the only time she has had a chest CT was at her initial diagnosis. The nurses called and said they had gone through the file and found nothing about a chest CT, only an x-ray. Our personal experience with x-rays are that they don't show a meaningful thing!
Sicily's cancer continued to grow initially because all she was given was x-rays! I have the piece of paper the doctor gave me on April 21st where he penned in "CT chest" above the other CT order. Sicily was supposed to have it done. So, needless to say, I came home on Tuesday a little frustrated and put out! Just to make things a little easier, we are going to have all future procedures done here. OKC did great for the time we were there, until just recently. So now Sicily will have to drink more radio-active contrast and undergo another CT scan (which is ten times the strength of a normal x-ray) tomorrow morning...something that should have already been done. I'm not going to dwell on it. Just needed to vent a little.
The ped/onc doctor on call this weekend just wants to make extra sure there is nothing going on in Sicily's lungs since that is the natural path of recurrence with Wilm's. I still feel confident she is clean, but Patrick and I are on the same page as the "thinkers" around here! Sicily is not hooked up to an IV tower so she is free to roam around the room. Feels kind of funny but is also a nice feeling. No tubes to watch out for, no plugging in and unplugging just to use the bathroom, and most important...NO BEEPING! We can still hear the beeps of pumps in neighboring rooms or out in the hall and Sicily remarks, "That's not me!" Nope...no beeping for Sicily!
I'll report tomorrow if anything develops. We're doing good and just enjoying our time together!
Just found out Sicily's scans won't be until around noon and then I have no idea when we will hear about the results. Patience is in play and God has blessed me with an abundance for the time being. Good news is that she doesn't have to drink the contrast...she only needs it injected through her port. That allowed her to eat a small breakfast. Small in that she ate three bites of a waffle and drank some water. Hospital food is never that great! I've had plenty of experience in that.
I brought up some Chinese food for her and I to eat for dinner last night and she ate enough to carry her through today. The girl likes Chinese (and so does her mommy!) Wish I could cook some of my favorite Chinese foods, but if I new how much oil and fat was actually in each recipe, I'd probably refrain. Still doesn't stop me from splurging and ordering out every once in awhile. And if you could have seen this little girl put it away last night, you'd have understood my decision in bringing it to her. She still has not gained any weight in the almost year since she was diagnosed. She has grown taller, but she stays consistent in the weight category...around 37 pounds. Still in the fiftieth percentile.
We also take in consideration her activity level, which is, shall we say, HIGH! She very quickly burns off every ounce of food she consumes. She is not a couch potato and rarely stops moving. Her physical stamina could have only helped her through out her whole treatment! She is relaxing in the reclining chair right now watching a movie as she is tired. We both are.
She coughed all night long and also received two breathing treatments. I think she is due one here in about twenty minutes. She just does whatever needs to be done. Again, I am so proud of her strength. The nurses needed to suction her nose last night to try and get a little nasal secretions for testing. They came in prepared with three people and all I had to do was kneel by her bedside and hold her hand. Unfortunately, this was one of the rare times her nose was dry. After shift change, Sicily sneezed and produced a little something. I jumped up and told her not to move and ran out into the hallway to the nurses station and asked our night nurse if she still needed some snot? Yes, I did say that! You have to realize we have really strong relationships with these wonderful people and sometimes verbal medical jargon is not necessary. Our nurse, Jennifer, jumped up and said, "Yes, I'll grab the stuff!" We were successful in retrieving just a smidgen of the necessary fluids...enough to be tested. That's how things work when you are a card carrying member of the frequent stayers club at the Children's Hospital! ; )
Patrick met my sister from OKC on the turnpike this morning to deliver the three older kids to her care. They were beyond excited as they just don't get to see their cousins enough these days. They could probably live next door to them and still not think they see them enough. So, my sister took this unexpected opportunity to have the kids for a few days. There is always a silver lining to every situation.
I don't know how many who read my thoughts I shared the other day about the house being built behind ours. The house, in my mind, was representative of the cancer in our lives. I'm not implying that having a house built so close to our own is equal to the journey we've been on...it is more metaphorically speaking. The house obstructs our perfect view (cancer obstructed our perfect life), our activities behind our house will now be limited (the activities of our life, in general, have changed forever), but we will be blessed with new neighbors soon (the blessings we've received and the people we've met due to Sicily's cancer have been astronomical and have enriched our lives beyond what words can say)!
I apologize for having another one of my continuous rambling sessions. Not being able to walk the hallways with Sicily and her having control of the TV leaves me to hover over the computer. I promise, you may not hear from me all of next week!
I'll report the findings of the CT scan once I receive them. I'm sure it will show a little something as every nurse and doctor who has listened to her chest "hears something." Good news is we haven't seen a fever since yesterday sometime. I think Florida will still be a go! ; )
Reynold and I met sweet Miss Sicily today!! She is truly an angel face and so precious!!
Here is Kerry's kind and thoughtful post of our visit...
Monday, July 13, 2009 7:37 PM, CDT
Sorry for not updating sooner...I have been having problems with our connection here at the hospital. We were briefly told by the nurse that the chest CT came back clear. Have not seen a doctor yet but most likely won't until morning. I think this will be chalked up as a viral issue and be sent home on breathing treatments. Works for me.
Sicily and I had a very precious gift today in the form of a visit. I need to explain a little background. Back in September of last year, a little three-year-old boy passed away after battling for his life for only two months. His name was Cole and he made a huge impact on thousands of people. It was the first experience of a child passing away from cancer that I had since Sicily's diagnosis less than a month before. I cried. I felt sick. The idea of a child not surviving cancer became a reality through the computer screen. I cried more. I felt despair. But out of this heartbreaking tragedy bloomed the C.O.L.E.'s Foundation...Caring Openingly, Loving Eternally.
The foundation began pairing prayer warriors with children battling cancer. My sister-in-law, Bett, and I were of the same mind when we both sent in a request to have a match made for Sicily. Meanwhile, a wonderful lady in Maryland, who already followed and supported dozens of children (probably close to between 50 to 60) through their CaringBridge sites signed up to be a Cole's Angel. She was told to pick a child from the numerous ones she was currently following, but confessed she could not do it. So one was chosen for her. Caterina, who's family is originaly from Sicily, Italy, was assigned to our little Sicily...without anyone knowing the name connection. We both felt like it was a match made in heaven.
Caterina called me while I was at Sicily's beside in the PICU after her first surgery. Our friendship grew through emails and phone calls. Caterina asked if she and her husband, Reynold, could come visit us some day. That day was today. They flew all the way from Maryland just to see us. Having them walk through the door of the hospital room today and hugging them face to face was beyond anything I could have imagined. A divine presence describes it best. I felt like I've known them my entire life and enjoyed so much the time spent together. More important, Sicily warmed up to them in no time. That in itself was a miracle for those who know how stoic this little gal can be! They will come visit us at our home in a day or so.
All this evolved through the tragedy of a little boy lost. But his legacy is carried on through the supportive relationships developed through the foundation his daddy began. When I say that Sicily's cancer has blessed us in many ways...this is the kind of thing I am talking about!
We will hopefully be sprung sometime tomorrow. I'm not setting myself up with expectations of times so I won't be disappointed. I was already surprised today when the radiology tech showed up at our door with a red wagon at 10:30 to take Sicily down for her scan that was supposed to be around noon. That was a good surprise!
Little miss wants to cuddle in the reclining chair so I'd better sign off! Good night all!
Location: Me and my Spanish exchange student, Quique!
Praying for Sicily and her family!!!
How wonderful that the two families were able to meet!!! It is amazing how strong friendships can become between prayer buddies! Even relationships that are MILES apart!
Sicily continues to be in my thoughts and prayers. I pray for a quick and easy resolution to this fever, and clean tests after that!!!
Thank you for your "rambling sessions" as you call them. God has blessed you with a writers touch, and I enjoy reading your posts like a novel, only I know that the characters are real, and so are the high's and low's. Your strength in God is such a motivation to me. I pray that this FUA is just a viral thing that clears quickly and without complication. Sicily is a strong little sweetheart, and I'm so glad that Caterina was able to meet your family. I thank you for sharing your thoughts and life with us!
Sicily and I are home. She is already terrorizing the cat! We were sent in tow with a nebulizer and we just had her prescription for Albuterol filled so we can continue her breathing treatments at home for a few days. We'll return on Friday to the clinic to see how she is doing. When I picked up the Albuterol prescription, the pharmacist explained that it can make children a little hyper. Great! I didn't seem to notice Sicily acting as such in the hospital, but being home is a whole other issue. She is supposed to have a treatment every six hours, even through the night. Wish us luck!
She is already in a temper tantrum mood right now. Really in need of a nap. Probably both of us are. We'll see who's lucky enough to get one! I was not really told "what" Sicily had. I guess it is safe to assume it was viral. More importantly, we ruled out what it was NOT! I have taken on the mental mind set of still not letting myself get too worked up over life's uncontrollable situations. I'm usually a very emotional, easily stressed type of personality (unfortunately, I still let the small stuff get to me sometimes. That's more just out of annoyance). Sicily's diagnosis has taught me to attempt to let go of the "big" over reaction "reactions" typical of me! I did not experience too much "scanxiety" last Tuesday or yesterday. On the same note, when the news comes back positive, I don't jump up and down and celebrate. I handle it in a calm manner...I will exhale and experience a small sense of relief. I will let those around us do the celebrating. This is just what works for me at the moment. It is an adjustment for me, but it allows me to continue to function without feeling like I am on a constant roller coaster ride. I used to love roller coasters as a child...as an adult, they make me sick...real ones and figurative ones!
I'd better get something done around the house. Everyone have a good day.
My prayers are with you. I remember the Albuterol very well when my 14 yr old was small. He was in the hospital twice for RSV and they would give him those breathing treatment and he would be wired. Even at 2 am he would be up playing and screaming!
The nurses then gave us our our room so he didn't keep the other child awake all night.
I begged for a different med in his treatment but they said this was the one that would work. Well they didn't have to deal with him afterward either!LOL
I hope Sicely feels better very soon and you can get her off the Albuterol.
We are still in Oklahoma and were blessed to visit with Sicily and her family in their home yesterday playing cards, monopoly, making paper airplanes and eating Chinese food. It was very difficult to leave them, watching Sicily throwing us kisses!
Oh Caterina, what a joy that must have been to meet Sicily, I am so tickled you went. But did you give her a hug for me? I hope some day to meet the woman I am a Chemo Angel to. I recieved an email notification that she has graduated from needing a Chemo angel, but I am still writing to her and plan on continuing, we have become freinds, why would I want to stop now???
You only live once, but if you do it right, once is enough! Chemo Angel
Oh Caterina, what a joy that must have been to meet Sicily, I am so tickled you went. But did you give her a hug for me? I hope some day to meet the woman I am a Chemo Angel to. I recieved an email notification that she has graduated from needing a Chemo angel, but I am still writing to her and plan on continuing, we have become freinds, why would I want to stop now???
Absolutely, gave her many, many hugs and told her what a big celebrity she is on SCS!
Thursday, July 30, 2009 9:48 PM, CDT
I am sooooo sorry it's taken me this long to be able to journal. We got home Sunday late in the afternoon, and I didn't jump on to the computer until Monday morning. I opened up my inbox with over 500 unread messages. Needless to say, I had to walk away and tend to other things. I still haven't made it through a third of them. Luckily, quite a few are advertisements, so those are easy to delete. I can't delete anything else unless I've looked at it to check the contents.
Let me just start off by thanking Caterina and Reynold Grove once again for visiting us all the way from Maryland. You both made quite an impression. Between Caterina playing Monopoly and Reynold flying paper airplanes, the kids bonded and felt very close to them. In fact, Corinthian commented as we watched them drive away, "They feel like family." I replied, "They are!"
I haven't been able to journal about our Florida get-a-way last week until now. For one, I was determined to upload pictures to accompany my writing (which I did, yeah!) and two, I was still absorbing and cherishing how amazing a week it was for us. I don't want to go on and on with too many minute details...I could write a book alone on just how much it meant to us as a family. And I think the feeling was mutual for all involved with this amazing organization. I just want to take a second to give a quick background on what The Lighthouse Family Retreat is and how it was started. It is described as "a seaside retreat for children with cancer." (www.lighthousefamilyretreat.org) An incredible woman named Melinda started it ten years ago. Melinda was a nurse who worked with pediatric cancer patients and their families. She, like many, felt almost helpless at times with what the families of these precious sick children had to go through. She had a dream of wanting to take a family whose child was battling cancer to the beach for a little get-away. She would cook for them, do their laundry, set up an umbrella and chairs on the beach, turn down their beds...and just do about whatever else needed to be done for them so they could relax and focus on "the family!" She said she could not take the cancer or the pain away, as much as she wished she could, but she could hopefully help the family relax all together for a week and just be taken care of away from doctor's offices and hospital beds. Her sweet little dream is now a huge reality. If you ever really wanted to see how one person could make a difference in the world, I would introduce you to Miss Melinda. Our own family was one of fourteen fortunate enough to humbly accept the compassion and care bestowed upon us by countless volunteers. We were assigned two volunteer families who were our "family partners." They helped carry our luggage to our rooms the minute we arrived and spent the rest of the week just being there for us in any capacity that we needed. I can honestly say, we made friends for life. I can't express in words that would do justice to how grateful we are for what they all did for us. One of our new friends, a volunteer, described what the retreat felt like to her, "Like getting to go to summer camp with your kids!" Exactly!
I pretty much rode an emotional roller coaster ride the entire week. But it was a ride that needed to be ridden and I came away feeling drained and invigorated all at the same time. Patrick and I were able to sit with the other "cancer" parents after breakfast each day in sort of a group therapy session. It's not titled that...it is only known as "common grounds," as we all have something in common. We are all on the childhood cancer journey. While we met at one of the seaside houses for coffee and conversation, the volunteers entertained and played with our children. We went around the room and shared our stories, our fears, our heartaches and just about anything that came to mind and we felt compelled to discuss. By Wednesday morning I was truly an emotional wreck. I couldn't put my finger on it until I sat down again and began to talk, and as I looked around the room at the other tear filled eyes, I finally understood why I was having such a hard time. Every set of eyes I laid my eyes upon in that room, truly understood what we are and have been going through. In a short weeks worth of time, I feel like I bonded with these other parents on a level nobody wants to, but feel beyond blessed to have done so. We may never see some of them again, others we may be lucky enough to reunite someday...but I will never forget any of them and how strong, courageous and brave they have all been.
The kids enjoyed themselves as they should have and deserved to. I'm still processing it all in my mind how incredible it all was. I have to say it was one of the most wonderful experiences of my life. All due to one woman who had a simple dream and acted on it. By the way, two hours into our drive heading for Florida, Patrick and I realized that neither one of us had grabbed the video camera. Disappointed as I was, I let go my upset emotion. I still had my camera and planned on taking a ton of pictures (I lost count at around 400...the beauty of the digital age!).
The visions of Sicily running her feet through the white sandy beaches and experiencing the cool, crystal clear ocean water for the first time in her short little life will forever be etched in my mind! The girl discovered that she looooves the sand. She would lay down in it at any time and make a sand angel. She would bend over like an ostrich and put the top of her head directly in it. It was a clever way of covering her still bald little head as she usually did this right after I'd applied a nice coat of greasy sunscreen. How we didn't end up with half the beach in our luggage and inevitably our living room floor at home, I'll never know. I did have to take the vacuum to the luggage, though. But it was totally worth it.
Elias also discovered that he really, really likes the sand as well. He's the digger in the family and he just doesn't seem to get too far down in the hard, red Oklahoma dirt. On the beach, he could have probably dug a tunnel to China...and still made it back in time for the evening meal. Speaking of which, for our luau night we had a low country boil. I've never seen shrimp so big in my life. Sorry...said I wouldn't ramble too much about the details, but I just want to relive that week over and over in my mind. I'm sure I will bring it up again from time to time. I just wanted to thank anyone that might have prayed for our safe travel. We were safe and everyone did very well for the almost thirty hours round trip...we split up into two days coming and going.
We are trying to all get back into the swing of things and we miss having an ocean view out our bedroom window! But at least we had it for a week! A little bit of something is better than nothing at all. School starts here on August 12th for the older three kids and Sicily has her big day on the 25th. I will most likely not come home after taking her that day as it will be hard to come home to a quiet house (our house is NEVER quiet). I will ease my way into it. She is so excited and I can't wait for her to be a part of a preschool classroom. She will be received with open loving arms at our church and I can't wait to hear all about her day when I pick her up.
Okay, I'll close with the link to a picture montage I put together of our retreat. I tried to narrow it down as much as I could. I had a lot to work with! ; ) The link is also posted up under "resources" at the top, just in case I type this wrong! http://www.onetruemedia.com/shared?p...edium=text_url
Love to you all!
Wednesday, August 19, 2009 11:53 AM, CDT
Just wanted to jump on here very quickly to say we are doing great! I will update with details later. I've been running around the past two weeks (somewhat like a chicken with it's head cut off) just getting kids ready for school and tackling some big projects around the house. It's scary how "normal" things feel right now, even though I know the sidewalk we are on could still crack and crumble at anytime. I continue to be cautious with each step I take, but still manage to look up and enjoy the exciting scenery of our lives and its surroundings! Life is still beautiful and wonderful and such a blessing!
I promise to update more later. I apologize for slipping this long. I have been having severe withdrawals but just haven't been able to get to the computer! I hope you've envisioned us just "living"...because that's what we've been doing.
Please continue to pray for Sicily and her mommy, too. Thanks
Friday, August 21, 2009 10:30 AM, CDT
Good Friday all,
Another "quick" update. Just kidding...this one is quite windy...like I usually am! I'm feeling a great deal of emotion today and will most likely do the same tomorrow. It was August 22nd last year, but on a Friday when we heard the life altering news about Sicily's cancer. It seems so long ago one minute, and the next I can remember it like it was yesterday. Sicily and I were probably already on our way home by now from having the CT scan and Patrick was back at work. I remember running to Dollar Tree and letting Sicily pick out some little something for being so good and so brave during the scan. Then we headed next door to Wal-Mart to get groceries. I think it was between 11:00 and 11:30 when my cell phone rang as we stood in the dairy section picking out Yo-plait yogurt...funny how I can even remember exactly where we were in the store and what we were doing. When the pediatrician said she needed to see Patrick and I back as soon as possible, every muscle in my body froze...it even felt like my heart stopped beating and though I was standing completely still, I could not breathe. People continued to move about me in my motionless state...oblivious to the wall that was falling on top of me. As I have said before, God has managed time and time again to put people in my path when I have most needed them. I will never in my life forget wanting to find someone so fast in a store...someone I barely knew. I journaled this story a long time ago, but it is still one that truly amazes me. The Thursday before, Sicily and I went to her preschool open house at our church to meet her teachers. That is were we met Miss Josie, who teaches all the children Christian Lessons. We ran into Miss Josie that Friday morning as we entered Wal-Mart. After the fateful phone call and I was able to jump start my body into movement, the first thing that came to my mind was finding Miss Josie. I needed someone right then and right there to talk to. I frantically walked through the store with tears rolling down my cheeks and a confused little three year old by my side. I found Miss Josie checking out and preparing to leave. I found her just in time. I asked if I could talk to her and told her briefly what was going on. She hugged me and told me she would start making phone calls for prayers. Remember, we had just moved to Oklahoma from Kansas less than three months earlier and barely new a soul, except for a couple of special people at church. I did not know at the time that Miss Josie also served as the prayer circle contact for our church of almost fifteen hundred families. God blessed us from the beginning of this journey and continues to do so time after time. I just found out this week a little baby boy, only nine months old, from around the community of Enid where I was raised and grew up was just diagnosed with Wilm's (www.caringbridge.org/visit/cashcaywood)
The flood of emotions I'm feeling over hearing the news and the timing near Sicily's one year anniversary of diagnosis has affected me. My heart breaks so much. In the past two week, as well, two beautiful girls earned their angel wings after valiantly battling Wilm's...the "cancer to have if your child is going to have cancer!" : ( Through all the love, compassion and blessings we've received this past year, I still want to shout at the top of my lungs from the tallest mountain how much "I HATE CANCER!" I will continue to pray that Sicily and all the other precious kiddos still waged in the war will beat this and grow up to be healthy and amazing adults. I pray for Sicily to stay cancer free so we can work towards making a difference in this world of disease that nobody should have to be a part of! We have a family member, our niece Whitney, who set up a group on Facebook (Wilm's Warriors) that is going to use the participation in marathons to help bring awareness to our cause. It was started by wearing the "Wilm's Warriors" t-shirts at the OKC Memorial Marathon in March. She and some of her friends will be running some future marathons in Tulsa and I think Vegas soon. We will reunite next year again at the OKC Marathon and people are going to see and hear about Wilm's!!! ; )
Okay, enough rambling. I will honestly say that all has been great on the home front and at school. I am so relieved that the transition for Isabella into middle school was pretty uneventful. The night before school started, a week and a half ago, I was a nervous wreck even though I did not let on to Isabella that I was worried and nervous. I hid it well, except to Patrick. I decided to let Isabella wear a little eyeshadow (the lightest, palest color pallet I could find) and some colored lip gloss. She was very happy and I have to say it boosts her confidence level. On the first day of school, I asked Corinthian, who is now in eighth grade, if he could PLEASE just go with Isabella to her locker and help her with it if needed. She was struggling a bit with it, as I'm sure a lot do in the beginning. He is not the "protective brother" type so this was a major request. Unfortunately, the sixth graders were dismissed from the gym long before the upper grades so by the time he got to her locker, she had it opened and was putting her things away. I was so happy to hear that! Corinthian proceeded to his locker and wouldn't you know it, he couldn't get his to open. He had to ask one of his buddies to help out. Isn't that how things go? So the joke became that maybe Isabella should go assist him! I am still sitting a bit on the edge of my chair waiting to see how well Isabella will comprehend her assignments and so forth, but one of her new teachers did something that really helped to set my mind more at ease. We were fortunate enough that the counselor was able to place Isabella in a few classes that are team taught so she can hopefully receive more help. Her Literature/Language teacher sent a note home on the first day that asked if we could write "in a million words or less" some things about our child that might help them to better understand their individual needs. I was overjoyed with this idea and could have probably wrote up to a million words, but did summarize it pretty well in less than two pages. I also gave the teacher permission to share what I wrote with Isabella's other teachers in an effort to help her not fall through the cracks since she is no longer under the umbrella and safety net of an IEP (individual education plan). I can't wait to meet this teacher and thank her so much for allowing me to write about Isabella and her scholastic journey and the life we've been living his past year!
I'd better wrap this up. We are infact getting to go home to Wellington to visit family and friends this weekend (Elisa Creed, email me if you get this so maybe we can finally get our two Wilm's Warriors together!). I think I've packed more suitcases this single year (due to all the hospital trips) than all my forty years combined! I should be good at it and not mind it, but I still "dislike it" ("hate" is too strong of a word to use unless it's put infront of the word "cancer!").
Sicily's big day is next Tuesday, August 25th. I will update how everything goes with her first official day of school. Monday morning we go into the clinic here in Tulsa to get her port flushed and schedule her next CT scan for sometime in October. That day will be here before we know it. Until then, we will live and love each day we are given and pray the future will be one we can handle!
Everyone have a wonderful weekend!
* One more thing...Natasha Beddingfield was on the Today show this morning and sang, "Pocketful of Sunshine"...still Sicily's favorite song. It was "her" song last summer before she was diagnosed and became "her" theme for the journey she faced. I thought it was pretty poignant and appropriate for today!
Location: Me and my Spanish exchange student, Quique!
I'm not sure "HATE" is a strong enough word!!!
You and your family continue to be in my prayers, especially Sicily!!!
My 8 year old family member that was a victim of cancer. He had an inoperable tumor in his brain stem that did not respond to chemo or radiation. He passed 11 months after his diagnosis. My Aunt also succombed to cancer's ugly grasp after a long battle with breast cancer. My mother fought a hard battle with gall bladder cancer that consumed her within 7 months. I just found out that 2 close friends have brain tumors, one has had surgery and is going through chemo right now, and the other a 30 year old newlywed, that battled cancer when she was 15, was just diagnosed with a pool ball sized tumor and is at the neurosurgeon right now to find out what they need to do. My best friend from college, was just diagnosed with kidney cancer, and is awaiting a radical nephrology or removal of her kidney and 5% if the other one. Hopefully, they will not have to take more than that.
Stories like these are common in many families, and my heart and prayers go out to all, especially when a child is the one diagnosed. One of the biggest problems is that we are not just fighting brain cancer, we are fighting many sub-types of brain tumors! We are also fighting the fact that one person may respond favorable to one treatment, but the next is not so lucky.
We need so many more of our kids to excel in math and sciences, and go into medical research! We need more people who will send $200 to their local cancer society, instead of buying 4 tickets to the ball game. It makes me sick that the researchers make less money than most sports or tv celebs, and yet they work endlessly to find answers to such hard questions. It makes me even sicker that these athletes and celebs are the heros to our society, instead of the researchers that are working towards cures for so many diseases.
I'm rattling on, but my message is that I am SO PROUD of your neice Whitney, and I hope you pass that message on to her! She is the hero that we need to celebrate!!!! AND others like her!!!! Let's ask our sports and movie/tv personalities to donate a certian percentage of their salery/ticket sales/ whatever to research. Make them act more like the hero's they pretend to be!!!
I'm so sorry I'm updating so late. We've been busy and it's been great! I'll start with today and then back up a little. Today, a year ago, Sicily underwent surgery to place a port in her little body. A port that would serve as the recipient of the much needed chemo that would eventually kill her cancer. A port that would be used to give her life sustaining blood on numerous occasions. A year ago she was supposed to be enjoying her first day of preschool instead of having surgery. But today, one full year later, Sicily was finally able to enjoy, or I can actually attest that she LOVED her first day of preschool. All morning long she kept repeating over and over how excited she was.
Her pink leopard print messenger bag we bought a year ago was ready for it's debut and her lunch of Spaghetti O's, carrots and grapes was packed and firmly grasped in her hands. She seemed to have a perma-grin attached to her face all morning. She had asked me from time to time in the past few weeks if I was going to stay with her at school. I answered cautiously not knowing what sort of response she was looking for from me. To my surprise and relief, she voiced that she did NOT want me to stick around. I was free to leave, per her request, and the final umbilical cord would soon be severed, even though that very thought caused me to clinch my teeth and fight back the tears! I knew one thing for sure...the tears I would be shedding this year as opposed to last year would be tears of joy, thankfulness, and contentment! We honestly did not know if this bitter sweet day would arrive for us, but it did and we are basking in our life!
So, back to this morning...Patrick and I take Sicily to her class and she immediately sat down at her little desk and began to play with the pink play dough placed there before her. I didn't want to linger too long, even though I truthfully would have been happy just spending the day sitting outside her door! But she was more than ready for this day and there was no place on earth she wanted to be more! We told her goodbye and she smiled and waved. I did okay emotionally until we were just about to leave the church. I caught the eye of the preschool director and went to give her a hug. That's when the tears began to flow. But again, these tears were sweet!
I ran errands for the four and half hours she was at school. I went to the mall for maybe the fourth time in fifteen months since we've lived here. The last time I was there a week and a half ago, Sicily was with me and we had such a wonderful time. She hadn't been able to do such a simple thing as walk around the mall since she was diagnosed. And at her young age, she has very little memory of the few times I took her to the malls in Wichita, KS. So this was some what of an adventure for her. She was in awe of everything. Riding down the elevator with the glass wall was exciting as was riding up the escalators. When she'd hop off she'd remark, "That was so fun!"
We sat and ate lunch in the food court and I enjoyed watching her just watch people. She was intent on soaking up everything. She was still oblivious to the stares she received of her appearance, even though her head is recovering its protective locks. We actually had two elderly ladies on separate occasions comment on how beautiful her hair was. With the second lady I even commented back that Sicily is our brave little four year old cancer survivor. The sweet woman said to Sicily, "Me, too, I survived cancer, as well!" Then she winked and smiled. I know there are people we pass every day and some directly around us that have heroic stories of their own that involve battling this unthinkable disease. I enjoy meeting some of these people, even if for just a brief instant. I'm often reminded of how much compassion is really out there!
Once more, back to the present...when I went to pick Sicily up from school at 2:00, I entered her room to find her smiling from ear to ear. The teachers said she did great. As we walked down the hall, she excitedly exclaimed, "I want to come back here tomorrow!" I wanted to cry again...I am absorbing every ounce of happiness she is emitting!
Backing up to Monday morning, Sicily had an appointment to have her port flushed (which it still works great) and Patrick and I were able to meet with Dr. Hum to discuss her next CT's. Reality hit home a bit as we discussed the need to continue to have CT scans of Sicily's lungs due to the anaplasia. They would like to continue for the next year to possibly eighteen months (scheduled in three month intervals) just to be sure nothing is missed. After that maybe we can alternate in between the CT's with x-rays and ultrasounds. Patrick and I are in agreement with the doctors on how closely Sicily needs to be monitored!
Even though life has seemed so "normal" for us these past couple of months, we will be living and functioning under a constant "tornado watch!" In this part of the country, residents living in tornado alley have to get used to going about their daily lives under "watches." A tornado watch basically means that conditions are present and could possibly be favorable for a tornado to develop. That's how I feel these days. Conditions for Sicily's cancer to return are there...a relapse could occur at anytime, so we will for many years to come live in our own personal tornado watch. But life does not stop nor does it even slow down these days. Living in a "cancer watch" only makes us want to enjoy our lives that much more! I am so very thankful that our eyes are open to that and our hearts are receptive, as well! And I know the way we have handled this situation has had an impact on others, and that, too, is one of the most amazing blessings!
Well, it's getting late and I'm pooped. I will journal more later...hopefully sooner than later! I have more to share, including a sweet story about a great group of kids and a very special teacher in Wellington.
Sicily continues to LOVE getting to go to preschool. I'm afraid of the disappointment she will feel tomorrow when she realizes she doesn't get to go. After I had picked her up on Tuesday, it was funny the things that made an impact on her. She said she could bring chips in her lunch because another little boy had chips in his lunch. And one girl had a sandwich. So before we even got home and pulled into the garage, she had decided what she wanted to take in her lunch the next day...chips and a sandwich. She has never been much of a sandwich eater unless it's been peanut butter, but her school is a "peanut free" school due to allergies. I explained to her that she was going to have to try something different, but that was okay with her. In her mind, taking a sandwich and chips made her feel like she was just like the other kids. It reminds me of a scene from the movie, "My Big Fat Greek Wedding" where the main character, who grew up in a very Greek family and therefore took only certain foods in her lunch to school, different from all the rest. She always felt like the odd man out growing up, so when she decided to return to school as an adult, she packed her little white bread sandwich to make herself feel like she fit in. That's how I see the wheels turning in Sicily's little mind. When I picked her up again on Tuesday, she excitedly reported eating all her sandwich. But this was no ordinary sandwich, mind you. It was mesquite turkey breast and American cheese with the crust removed and cut into two equal heart shaped sandwiches. She loved it.
I was very proud of her, even though it seems like such a trivial thing. We've spent the past year battling her appetite situation. She did not gain any weight once she started chemo last August and barely grew an inch, which is not uncommon among young children receiving chemo and radiation. Since her completion of treatment in June, she has gained three pounds and even grew a tiny bit in height. We were never worried about her, though. She still had a head start with her percentages. She is now 75 percentile in weight and 90th in height. That can all still be affected down the road!
I wanted to share a sweet story about a group of kids and a special teacher in Wellington. Over the summer, an elementary teacher name Anne Shinliver, led a group of kids in a math camp. One of their objectives was to start a business and sell goods of some kind. It was decided that they would sell lemonade and homemade popsicles. They also determined that they would like to donate the proceeds to Sicily. We were so honored. On the day of the business, they only had about 90 minutes to sell their tasty treats. Mrs. Shinliver reported that the kids held up signs and excitedly jumped up and down to draw attention to their sale. Their drive and determination paid off and Sicily was given a check for $135, which we proceeded to go toy shopping and buy gifts for the kids at The Children's Hospital at St. Francis here in Tulsa. We've been on the receiving end of those generous gifts, so it was our turn to give back. And thanks to Anne Shinliver and that great group of kids, we were able to do so in a big way! This is the part of my daughter's journey with cancer that I absolutely love!!!
Sicily's next CT scans have been scheduled for Friday, October the 9th. If we are constantly living in a "cancer tornado watch", then the days we have scans can be compared to a tornado warning. We are more apt to be on edge and prepare ourselves for some potential damage. But I have said it and felt it so much in this past year...when we have been blessed and our lives have felt so fulfilled, Patrick and I would say, "God always takes care of us!" On the flip side, when we've felt no control over any aspect of lives and felt despair, heartache and confusion...I found myself saying again, "God always takes care of us!"
Wednesday, September 2, 2009 2:44 PM, CDT
Sicily is loving school and loving life! She had her first dance class consisting of tap, ballet and whatever else can grab the attention of a room full of little preschool aged girls on Monday late afternoon. As you can probably surmise, she absolutely loved that, too. Her energy level is high and she is full of spunk! We still truly feel like every day with her is a blessing!!! Even the days she is cantankerous and driving everybody nuts...yes, she does do that! ; )
Today when I picked her up from preschool, there sitting on her little desk before her was a beautiful arrangement of pink roses with a card addressed to "Sicily Zeka." The card was signed, "I am so proud of you...Your Secret Admirer." I asked one of her teachers if she knew anything about it and she said none of them did. I felt a knot in my throat. I asked the preschool director and she also did not know who sent them. She thought by chance maybe I had. Now everyone is curious (any clues???) ; ) No matter...Sicily was very proud of her pink roses and we just wanted to thank whoever was so thoughtful to send them and make both our days! And, yes, they did make me cry!
I have a funny and cute story to share. Sicily has a new little girl in her class who's first day was yesterday. It was explained to me that the little girl thought Sicily was a boy due to the length of her hair. I laughed off the innocent misunderstanding, knowing how thick skinned and carefree Sicily is about her appearance, but decided I would go ahead and talk with her about it. I asked her if she knew that some kids who did not know her might think she was a boy because her hair is so short? It's long compared to what we've been used to the last year, but to those who don't know her situation, especially other sweet young kids, they may not realize that it is just now growing back. In her usual "I could care less" attitude, she shrugged her shoulders and said, "Kate knows I'm a girl!" (Kate is her friend she often refers to as "Cake.") Guess that's all that matters! ; )
Fall is in the air and the temperatures are very comfortable. That alone puts me in a good mood. This is my favorite time of year. So much going on and so much to look forward to! I have been busy trying to "purge" un-needed and not used items around our house. Our church is having a garage sale later this month, so that is a big motivator. I like the thought of giving this "still useful" stuff to our church to help raise funds for the various charities they support. Plus, I don't have to have the garage sale...even better. I can't help but have a small agenda in my mind, as well. October 9th is my "D-Day" in a sense. I'm still going to try very hard not to let myself get lost in the worry of Sicily's upcoming scans, but I'm using the fear that is naturally there to motivate me to get our house in order..."just in case!" My mind works that way. I can't always do something just because it needs to be done...sometimes I need a little extra push...but not from somebody else. It has to come within me. I know, poor Patrick. He is honestly a saint! ; )
Sicily is looking over my shoulder and insisted I write in blue today. "Poof"...her wish is my command!
She is doing great and didn't even turn back around to say goodbye to me this morning when I dropped her off at preschool. She is just too excited to get in her classroom and sit in her chair.
I had to run some errands this morning and I went to a Big Lots store looking for one small item in particular, but came out with bags of stuff I had not intended to buy. But what I bought was not for us and it was just too good of a deal to pass up. I stumbled on some Martha Stewart craft kits that I could have envisioned Sicily and I working on together the many, many days we spent inpatient. Wal-Mart used to sell this little kits for $8-$10 (I know because I looked them over once or twice) but Big Lots had them all for $2. Some are kits for making little animals out of pipe cleaners...farm animals, forest animals, birds and bugs...and some are for making flowers out of tissue paper.
My heart raced with excitement as I put quite a few of them in my basket. When I went to check out, the sweet little lady ringing me up commented on how it looked like someone was going to be busy. I love to talk to people and openly remarked that I was going to take these little kits to the Children's Hospital. She voiced what a good idea that was. After she completed scanning everything, she reached in her pocket and pulled out a ten dollar bill and laid it on the counter. She said, "Would you go pick out five of them for me and take them with you?" My first reaction was to tell her she didn't need to do that, but I've come to learn over this past year not to deny anyone the pleasure of helping out...it's a feeling I get euphoric over myself. She insisted I do it and said she likes to help out for things like this and likes knowing where her money is going. I left my cart by her and ran back and picked out five more kits.
Again, my mind can envision the kids, young and teenage, having something to do that can put a smile on their faces as the clock slowly ticks the hospital hours away. My sweet friend, who's name is Jeanne, I believe, rang up the items and I paid with her ten dollar bill. I left the store wanting to cry through the permanent smile on my face. Aren't people amazing? Honestly, for her to lay that money on the counter was worth her donating a thousand dollars. Her willingness to help in such a way goes beyond what words could do her justice.
Before I left, I pulled one of Sicily's little yellow prayer cards out of my purse and handed it to her. I said, "I don't know if you have access to a computer, but this is my little girl." The card has this CaringBridge address on it. She replied that she does indeed have access and she tucked Sicily's little card into her smock. So if you read this, Miss Jeanne...thank you so much!!! ; )
You are truly one of God's Angels!!!
I've come to the realization that what comes around goes around. God doesn't keep score, and neither should we, but I do believe one good deed deserves another. Maybe God is just reimbursing us for what Isabella and I did Friday night. I really shouldn't even say anything, but I was so proud of Isabella and just wanted to share the goodness in her heart.
Patrick and I had worked long and hard all day Friday in the garage going through boxes that have been stored in the corners this past year. With the church garage sale impending, I really wanted to go through as much as possible and purge as much as I could. Needless to say, I was in no mood to cook dinner so it was decided to have Chick-fil-a, something we hadn't had since staying at the Lighthouse in Florida. We don't eat out very much as a family, so when we do it is sort of a treat! Isabella wanted to ride along with me so I welcomed the company. As I placed our order, I really had no idea what we wanted or needed so I just randomly order a certain number of sandwiches.
As we left the drive through and turned back onto the busy street, we stopped at a stoplight. There right beside us on my side stood a homeless man on the narrow strip of medium. He held up a small cardboard sign that read, "Anything would help." There is always a sense of awkwardness when you are that close to a person who is standing in the middle of the street, pride on the ground, asking for "anything!" Most people, including myself, tend to look straight ahead, trying to ignore the reality standing just feet away. The only thing separating us is the glass and metal of a car door. That's the only thing physically separating us.
The fact that he has nothing and we have so much began to wander through the mind of my sixth grade daughter, who sat there and could not take her eyes off of this man. She began to talk about wishing there was something we could do for him. Having left the house with only the money I needed to buy our dinner, I felt a little ashamed that I didn't have a few dollars to give him. Isabella sat with the sack of hot chicken sandwiches in her lap, and I asked her if she wanted me to give him one. Her eyes lit up as she nodded her head. I rolled down the automatic window (mind you, I am still very cautious...I do always keep my doors locked when sitting at a stop light) and I held out the sandwich and told him my daughter wanted to give him supper. He took it and said, "God Bless You!"
As the light turned green and I slowly pressed my foot on the gas pedal, I could tell Isabella was deeply affected by what she just saw. We spent the rest of the drive home talking about it and she wished there was more she could have done for that gentleman. She worried about him not having shelter. I told her she did a wonderful thing and that she can ask God to watch over for him. I still believe with all my heart that everything happens for a reason and there is a purpose in even the smallest of gestures. Funny thing happened as I drove, the song "Stairway to Heaven" came on the oldies radio station we had on and I told Isabella that her actions were building her own "stairway to Heaven." Goofy, I know! I could continue to write and think and feel so much more on this topic, but I've got to pick a couple of kiddos up from school and head to the dentist.
Just received this from a follow Cole member, please take a moment to vote for Cole's Foundation. Thanks and please feel free to pass it on to others!
This could be great for Cole\'s Foundation in Ironwood, MI! We sure could use more funds to send mylar balloons and gifts to our brave little heroes!
Tell everyone to vote for Cole's Foundation in Ironwood, MI!
The Christie Cookie Co. is donating a total of $25,000 to charities. From now through October 15, you can nominate your favorite charity to win. The most nominated charity will receive a check for $10,000. The runner-up wins $5,000, and the next 10 will receive $1,000 each. It takes less than 2 minutes to vote.
First I want to wish our son, Elias, a "Happy 8th Birthday" today. He is a piece of work and though it is his birthday, he is still in the dog house with me. He's doing a bit too much goofing off at school and not paying attention to his work. We're a little on the frustrated side with him. This is behavior I would have expected to see out of him last year in the midst of Sicily's treatment. I don't know if this is latent affects for him or what. Just want a solution to the problems so we will be having a long discussion with him this weekend.
Maybe he is trying to mature too quickly these days. He made a comment last weekend that he can't wait to get married. How many second grade boys are ready to get married? I told him I wasn't even aware he had someone special in his life. He replied, "There are several girls crushing on me!" Well, guess that means marriage has to be next! Crazy kid! Pray we can help him get focused and do what he needs to do at school!
Sicily is doing great and is still so in love with school. I can see why as she is nurtured and loved as much as she is at home. She is very proud of her abilities to write numbers and letters...something she had no previous interest in before. The many days spent inpatient would have seemed like a perfect opportunity to work with her but she was closed to the idea and never wanted to try. I just pray that she gets to continue going to school for a very LONG time, but that nasty little thought of a relapse continues to haunt my mind.
I just want October 9th to get here and pass. I was able to handle the "scanxiety" that presented itself while she was still on treatment. But I can feel my insides being eaten away daily as the date approaches.
From the outside, I still appear fine, and for the most part I think I am. I can't deny the feelings that are growing and the sickness that is building due to the worrying. I continue to tell God that I am putting this in His hands to do with what He may...but I still sway between confidence and pure putty at times. I hate living like this. It is so hard when so many aspects of our life feel "normal" again and Sicily's cancer and fight for her life seems like a distant memory and something that happened a long time ago.
I still find myself looking at the three inch scar on her abdomen and running my fingers over it to feel it's raised bumpy texture. The memories and experiences then seem to come flooding back to mind and are as vivid as if they occurred yesterday. And I sometimes forget that she still has a port until I see the raised bump on her side as she lifts her arms up over her head for me to help her off with her pajamas. I still have mornings when I wake up and wonder, "Was that all really a bad dream?" But then I realize it wasn't...but also realize the impact this experience has had on our lives and the lives of so many around us. I just want Sicily to be here and continue to make an impact in little ways and big.
Though I feel like I know as much as I need to know, or should know, about this disease that invaded my little girl's body, I still continue to do a little internet research from time to time. I should probably stop, but if I'm going to be an advocate for awareness and funding to help cure this beast, I still crave more knowledge.
I had the opportunity to listen in on a tele-conference call with Dr. Jeffery Dome a few weeks ago. Dr. Dome is one of the leading experts of Wilm's tumor and I wanted to listen to his thoughts and concerns geared towards the research being done on Wilm's. For the most part, Wilm's is considered one of the success stories in pediatric cancer. That being said, the success is seen in the favorable histology, Stage I and II diagnosis. He would like to see more extensive research being done on anaplastic Wilm's. Currently, it is still the dark shadow and the much dreaded aspect of Wilm's.
Statistically, Sicily's diffused anaplastic diagnosis puts her in the category of a 35% five year survival rate. That is no where near what I call "successful!" But it is less common of a diagnosis, so those numbers don't seem to get included with the positive sounding "ninety to ninety-five percent cure rate."
Sorry if I'm babbling too much about this or am too confusing, but this explains my demeanor and mood at the moment and why I am dreading October 9th so much. Once I am done venting, I can go on with my day and enjoy my rambunctious little fireball! And anticipate celebrating another year of life with our stinker of a son, Elias. ; )
And I apologize to anyone who has tried to contact me lately and I haven't been able to get back with you. I promise I will, it just takes me some time. Life is overwhelming at times with a husband who has been traveling for work (hadn't had to do much of that for a long time) and four kids with homework and other activities. The computer ends up being the neglected child, but better it than one of the others!!! So please, bare with me!
We are hopefully planning a little get-a-way over fall break. Since that occurs right after Sicily's scans, we will use it as a time to celebrate good news or a time to regroup as a family and prepare for the next turn on the journey. We'll all be praying for the former!!!
Please know that we continue to be so appreciative of all the thoughts and prayers that are still being sent up on our behalf. We are definitely blessed by your support!
This Monday, Chiliís Grill & Barģ asks you to dine out for lunch or dinner (or both!) and support St. Jude Childrenís Research Hospital.
On September 28, as National Childhood Cancer Awareness Month comes to a close, participating Chiliís restaurants around the country will be donating 100 percent of the dayís profits to St. Jude. Itís called Donate Our Profits Day at Chiliís and it is part of Chiliís month-long Create-A-Pepper to Fight Childhood Cancer campaign.
So everyone eat at Chili's you can dine in or pick up, either way your helping. St.Jude is part of COG the Children's Oncology Group, so money made for St. Jude not only goes to them but the research they do is shared worldwide. Still waiting for a cure that will one day come =]
Thanks as always and please pass along the message about Chili's.
We are doing pretty good around here, minus both boys having fevers and missing a little school. The girls have stayed clear of the rising Fahrenheits so far, and we hope it stays that way!
I just wanted to jump on here quickly to share information about an amazing guy and his drive to help bring awareness, attention and hopefully financial strength to the battle of pediatric cancer. In past posts you have read my writings about Pablo, a precious little guy who at the tender age of six years and six days old, passed away from anaplastic Wilm's, the same cancer Sicily battled. He touched my heart so deeply through his father's blog and I continue to follow the family's journey "after." His dad is so incredible, as is his mom and brother.
Jeff Castelaz will be cycling from Florida to California starting on October 10th in what is being called, "Pablove Across America." Along the way somewhere in Texas, Lance Armstrong will be joining him. I just wanted to share the website in case anyone is interested in keeping up with Jeff and his plight.
Log onto www.pablove.org and get ready to be a part of something BIG! I'm hoping and praying the news media gets a hold of this. I still have hope for the day when a parent is told their child has cancer that the thought of the child possibly dieing no longer enters into the picture!!!