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Sicily and I just returned from the clinic and she didn't need a transfusion. Her hemoglobin is at 7.5 and her ANC is 1000, so nurse Terri thinks she is on her way back up. We'll continue the shots and return on Friday for another CBC. We got the "thumbs up" to take her out to diner for her birthday tomorrow evening.
On Thursday Sicily and I will be going to a Tulsa radio station for the pre-recorded interview we agreed to do for the Children's Miracle Network that will promote the radio-thon fundraiser taking place at St. Francis Children's Hospital in June. I doubt Sicily will have too many words to say, as she does not speak often to those she doesn't know. But I'm sure I can chatter enough for the both of us!
I've contemplated taking down my Easter tree until I heard Father Joe say on Sunday that we will continue to celebrate Easter for the next fifty days...good enough for me. Tree stays up a bit longer! ; ) Yeah! It makes me happy just looking at it. Next year instead of putting it upstairs in the family room, I'm going to put it smack dab in the middle of the living room...well, at least where I put the Christmas tree! Again, there is nothing wrong with doing something a little out of the ordinary and goofy if it makes you happy! I won't go as far to put up an Easter tree in every room of the house like I do at Christmas! "Yes...every room!" If I can push enough furniture around to create a small space, a tree goes up! Ask Patrick...he'll vouch for me with a roll of his eyes! ; ) What a great guy he is for putting up with all my quirks!
Sicily is getting ready to (hopefully) take a little cap nap on the couch. I need to sneak off into my bedroom to wrap a couple of presents for her. Hard to do when she is literally on my heels at all times! I'm afraid she won't go to sleep as she "closed her eyes" on the way home from the clinic, and like her Grandpa Zeka...ten minutes is long enough for a nap! It takes me that long to just get comfortable enough to go to sleep.
Wish me luck on the wrapping! And thank you all for continuing the faithful gum chewing prayers! I wonder how many are going to end up with TMJ (sore over-worked jaws, basically) by the time this is all over?
I am thankful for God's love. Sicily will be able to spend her 4th birthday with family and friends. what a precious little girl. I hope that she receives many birthday cards to help the celebration.
Trust yourself. Create the kind of self that you will be happy to live with all your life. Make the most of yourself by fanning the tiny, inner sparks of possibility into flames of achievement.
"Happy 4th Birthday to our little Sicily Evelyn Zeka!"
Four years ago I was being prepped for a c-section that would be the means of delivery for our finale of four. Sicily was born around 9:00 and our lives were blessed once again.
I journaled a little background about her back on August 28th...I think it's near page #82, first posting, if any one is interested in a refresher course. I will never forget looking over and seeing that beautiful little pink squirming doll. She had a full head of dark brown hair. Many people have asked where her name came from. I joke that I'm an "Italian wannabe!" My favorite food is Italian...I want to visit and tour Italy more than any place in the world! But truthfully, my dad has a cousin who named her daughter Cicely. I always thought that was the most beautiful name...partly because she was also a beautiful girl. When our little Sicily was born, we hadn't settled on a name yet, but had three contenders. One look at her and we knew she was a Sicily!
I'd like to invite any who want to share a favorite story or memory about Sicily in her four wonderful years of life. She will enjoy having me read them to her and we all can laugh and cry at what God has blessed us with!
Today will definitely be a happy day as we wondered about eight months ago if it would even happen. After the shock of her diagnosis, many depressing thoughts raced through our heads. But we know now to live day by day and celebrate the small things!
Everyone have a beautiful, sunny spring day...even if it is tax day. You also know that a special little girl has many reasons to celebrate!
Sicily had a CBC done this morning and her hemoglobin is at 8.1 and her ANC is 14,300. When this little gal's white cells decide to go up, they GO UP! She will come back down into more of a normal range pretty quickly. We feel very fortunate that her body is still letting the GCSF shots do their job each time. Very awesome!
After she had her port accessed and blood drawn, we went into the playroom for the usual wait on the lab results, and low and behold what beautiful sight did our eyes gaze upon when we entered the room but our sweet little friend, Esther. She was preparing to go inpatient for chemo to try and help shrink the tumors on her liver and lungs. Start the prayers rolling that something miraculous will happen! The trial in Philadelphia won't accept her unless the existing tumors can be dealt with first. The really scary part is that more tumors are showing up in different places now. It will be a race against the clock between the effects of the chemo and the cancer's ability to continue to spread! Pray, Pray, Pray! But it was so good to get to see her sitting quietly there with her dad as he read books to her. It made our day!
I have to add a little funny story here...as we were walking down the hall to an exam room to have nurse Terri take Sicily's needle out of her port, I jokingly remarked, "Okay, Sicily, let's go get you de-ported!" I'm always trying to think of what to call this little procedure and hadn't quite come up with a name for it, until today. I've referred to it on occasion as "unplugging" but that didn't feel like the right term. One of the other nurses in the clinic happened to hear my "de-porting" comment and said that was the funniest thing. So from now on, it won't be a bad thing when Sicily needs to be "de-ported!" It just means she gets to go home and doesn't need any chemo or a blood transfusion! ; )
Sicily will be inpatient starting next Wednesday, April 22nd, for a three day treatment. We usually admit on Thursdays, but we needed to bump it up a day for personal reasons. We have family, including daddy, and some friends who will be running in the Oklahoma City Memorial Marathon on Sunday, April 26th, to help bring awareness to Wilm's and pediatric cancer. Everyone involved will be sporting bright yellow t-shirts with black and hot pink writing that say, "Wilm's Warriors" on the front and "Sicily's Pocketful of Sunshine...Rising Above Wilm's Disease and Pediatric Cancer" on the back. Patrick is running as part of a team with several of his nephews and the kids and I will be doing a one mile kid's walk. So, that is the reason for going inpatient a day earlier than we normally do. We want to make sure we get kicked out in time! It will be a very special weekend!
Miss priss is napping on the couch surrounded by baby dolls so I'd better attempt something productive. Every time she lays down for a nap or at bedtime, we exchange Eskimo kisses with our noses, and butterfly kisses with our eyelashes. Even with only about two remaining eyelashes on each of her eyes, she insists on giving me a "flutter" back. I giggle just at the endeavor! It's the sweetest thing!
Everyone have a great weekend. I promised Patrick we could work in the garage going through boxes that have yet to be unpacked since we moved...in June. UUUUUGH! ; )
Monday, April 20, 2009 11:56 AM, CDT
Sicily will be having a CT scan tomorrow in OKC. Due to the nature of Sicily's unfavorable histology, Dr. Meyer wanted to do another mid-treatment scan for precautionary measures. It was the tumor on her right kidney (that was later completely removed) that ruptured during surgery and had spillage...that was the unfavorable tumor. I'm not letting myself get all worked up about it...denying "scanxiety" to dominate my day as this is completely out of my control. If something is found, we'll deal with it. If things still look clear, that will be great. I'm assuming that Dr. Meyer wants to have another look around as it will determine if he cuts back on one of the drugs in Sicily's protocol, Doxorubicin. Dox, as it is referred to, is the drug that can potentially do irreversible damage to the heart. A person can only have so much of it in a lifetime. So, I think before he makes a decision on whether to cut back on it, he wants to be reassured that she has no current evidence of disease.
Sicily had a good weekend...played outside a lot and even got to do a little singing in the rain! She will be inpatient on Wednesday, so this is going to be a very busy week. We will be heading to OKC this evening as she has to start drinking the nasty contrast at radiology by 8:00am. One of Patrick's sisters will be taking care of the other three kids while we are temporarily away. It would be easier to just do the scans here in Tulsa, but Dr. Meyer is still our primary physician so we continue to travel to OKC for all tests. Wish us luck and send up an extra little prayer! I know she'll be okay! Again, it is all in God's hands! I'll try to post something when we get home tomorrow evening. Everyone have a great day!
We've returned from Oklahoma City were Sicily had an abdominal CT scan and a chest x-ray. Both have been declared clear, or NED (no evidence of disease). Again, I did not let myself get too worked up over the procedures before hand so the findings didn't over excite me either. Don't get me wrong, I am happy...this is just a mental game I have to play with myself. I do have a sense of relief. We're relieved that the chemo is doing it's job and nothing is trying to grow while on treatment...which does and can happen!
The day always seems long when we have to do all of this. We start out by checking into radiology at 8:00am for Sicily to start drinking the red contrast we learned to refer to as "Kool-aide." We never know how she's going to take it. She's had an aversion to it a couple of times, but mainly because she had such a hard time with it when she was inpatient after her first surgery. She had to have several CT scan as she was having complications. She threw up the contrast on several occasions and had to have an NG tube reinserted at one point so they could get it in her quickly. Not a fun experience or memory. But today she did go after it like it was kool-aide. She was pretty thirsty as she has to be NPO on the morning before the scan. While she's drinking three ounces every fifteen minutes, we have to walk and navigate to the oncology clinic to have her port accessed as it will be needed for another contrast done intravenously. Then it's back to radiology for a chest x-ray and eventually the CT scan at around 10:00, if we are lucky they are on schedule, which was the case today. Yipee! We have to kill time before the 1:30pm appointment with Dr. Meyer to go over the results. He only had a preliminary at that time and did not have the actual report from the radiologist, but he slowly clicked through each slice of the scan on his little laptop and felt confident that there were not changes to report since her last scan in February. Our brother-in-law, John, called later to confirm that the radiologist found no changes. We'll continue with Sicily's protocol as it stands and won't discontinue the Doxorubicin as was once discussed. On July 7th, which seems so far away, we'll return to OKC for her "end of treatment" abdominal scan, chest x-ray, and echo on her heart. That will be here before we know it.
We head to the Children's Hospital at St. Francis in the morning. I'll report more tomorrow and may attempt to add some more pictures once we get settled into her room. I haven't been able to be on the computer very much at all lately, so I haven't been able to upload photos from my camera nor have I been able to keep up with my correspondence...so I'll try to do a little catching up if Sicily lets me stay in the room for more than thirty minutes at a time! ; ) I'm a little under the weather with allergies right now so that also is slowing me down. I have plans to "attempt" to go to bed early tonight, so wish me luck! At the dinner table, after we prayed together as a family, Sicily looked up at me and said, "I prayed for you, mommy, and Esther!" Oh, how my heart melts!
Thank you all for the never ending continual support. We are so very truly blessed! I know my acceptance of the situation and the emotional strength I feel carrying me through each and every day is only a result of the numerous prayers being said! Thank you so much!
We are checked in and the IV fluids are flowing. We are in room #324. Sicily is already chomping at the bit to take a walk and I'm still trying to get our usual stuff unpacked. We have a tradition of bringing certain things each time we are inpatient, little pieces of comfort from home...her favorite Hello Kitty blanket, her green and white polka dot pillow from her bed, and Hope and Faith bears accompany us, ALWAYS! Those things take up a good part of her suitcase. Luckily, we use a good sized one with wheels and a handle to pull it along. I've got the packing thing for our visits down to a science!
Sicily is starting off strong with her numbers at around 1750. Patrick calculated (as he always loves to do) that if she can start her chemo by 5:00, she could leave around 10:00pm Friday night. So that is our goal, to pray that chemo gets to start before then! I don't see that being a problem, but we never know how it's going to go. Will she hydrate quickly, or will she be an old slow poke today? She's already a little on the grumpy side as she woke up around 5:45am. I'm hoping she will voluntarily take a little nap so her bossy-ness will disappear. ; )
I'd better get back to tending to her needs! Everyone have a good middle of the week!
Our simple hope of having Sicily's chemo start at a certain time are dimming as the hospital's computer system is down. Our nurse is checking to see if she can walk the urine sample down to the lab to have it checked. Funny how things can fall to pieces when computers fail...what did they do in the "olden days?" I don't see a urine sample anytime soon as Sicily is curled up in the reclining chair asleep. I don't want to wake her from her peaceful dreams just to pee! And this is really nothing...so what if we don't start right when Patrick calculated would work best for us. We know better than to have those kinds of hopes.
I'm in a very somber mood right now as our little Wilm's warrior buddy in California, Pablo, received devastating news yesterday...the beast has returned. His first off treatment scans yesterday revealed three spots in his lungs. As his parents put it, they are "shell shocked!" I think I've posted his blog address before, but if I haven't, it's http://getwellpablo.blogspot.com/and there is a line under the entry that says "comments" if you want to leave them a message of support. This is such hard news for us to swallow.
Pablo and Sicily share the same "scary" diagnosis...anaplastic bi-lateral Wilm's...the tough stuff to treat. We just had the "relapse" conversation with Dr. Meyer in OKC yesterday. Because of her higher chances of having a relapse, we will be leaving Sicily's port in-tack for at least nine months to a year. That was sobering to think about. Pablo is several months ahead of Sicily and just recently completed his treatment. From what I understand, he finished the UH-1 protocol and Sicily is on Regimen i. The UH-1 was just suspended when Sicily's unfavorable pathology came back. Dr. Meyer consulted with Dr. Dome in Washington DC, one of the leading experts in Wilm's, and they decided to put Sicily on Regimen i. The concerns with UH-1 was with it's levels of toxicity...sometimes the risks of the drugs outweigh the benefits they are supposed to provide. I know Pablo had a rough journey with his treatment. They dealt with a lot of fevers and subsequent inpatient stays due to them.
The way kids handle the treatments are as individual as the kids themselves. Why one drug makes a kid very sick, while it doesn't affect another at all is a mystery! Sicily has never had to deal with fevers or nausea and for that we have been so very thankful! I've decided to make every attempt not to worry or fret too much about the things that are out of my control, but Pablo's news hits too close to home. I am very sad for this family right now and will be petitioning God for a miracle...once again. I feel like I've been doing that a lot lately!
On a happier note, Sicily received a gigantic, enormous yellow sunshine balloon this morning from our friend Caterina. The balloon sings, "Don't Worry, Be Happy!" The balloon has a little music chip at the bottom that when tapped, or in Sicily's case, "punched," it starts to play. Makes us smile! Today I needed that!
I'll report if there are any major changes, otherwise please continue the prayers for all the precious children in the battle of their lives, like Pablo, Hollyn, and Esther. Pray for those families who are hearing the news for the first time and dealing with the shock. Pray for the families who's child has earned Angel wings and are watching over them from above!
It's been an incredibly wonderful day. Sicily is doing great and had a blast, I mean total blast with Aunt Pat today as she drove down from Kansas to stay with her in the hospital while I was a chaperon for Elias' first grade class field trip. We went to the Oklahoma Aquarium and I was able to spend some very quality time with my sweet seven-year-old fella and one of his classmates, a darling little gal. It was entertaining to follow them from exhibit to exhibit and share in their excitement of the wonders of the water world. They both agreed that the highlight for them was getting to touch and more or less "pet" live sting rays. My parental worry monitor siren went off until I was reassured that they had been "disarmed." I touched one myself. I can now check off my life list of things to do..."touched live sting ray!"
My favorite exhibit was a tie between the jelly fish who were hypnotically beautiful, and the sea horses, who we learned a great deal about before touring the aquarium. Did you know that it is the male sea horse that carries and births the young? The female gives him her eggs and he carries them until they are mature and once the baby sea horses are born, they are on their own. It's funny to imagine fathers giving birth to eighteen year old offspring and then telling them "adios, have a good life!" Where's the fun in that? That's why going on this field trip with Elias was so very important for me, and him. So much of our life focus the past eight months has revolved around Sicily and her cancer. Patrick and I want to do everything we can to make sure the other three kids know how important they are to us, as well!
It was so awesome that Aunt Pat came to make this day happen for us. Patrick had a board meeting so he was not able to break away from work, which we know can't always happen. We are so thankful for the flexibility he has as his employer is very understanding. Can you imagine moving your family, starting a new job and two months into it your daughter is diagnosed with cancer. We couldn't do all this if we didn't have the support from all ends like we do. I hope all involved know how much they are appreciated! Really...our walk has not been one of misery. We've had our ups and downs, but I can honestly say with every ounce of truth in my heart, that we are still living our lives. Cancer has not taken it away from us.
I don't know what tomorrow brings, or what Sicily's end of treatment scans will reveal on Tuesday, July 7th! But I do know this...I am still getting up each morning and finding things to be happy about...I'm still going through each day thinking about a future for my family, even if that future is only tomorrow, it is still a future...I'm still feeling surrounded by the love of my husband and children...and I'm still believing in God's eternal plan!!! Does anything else really matter? If we live each day burying ourselves in self pity and needless worry for things beyond our control, then we are wasting God's gift of life. He never promised each of us a long mortal life, only one of forever in the hereafter! I have to hear myself say these words and read my own typing of such words to continue to remind myself of how to live right now under such circumstances.
My mind has not left the mental side of Pablo's family since hearing the news yesterday of the cancer's recurrence. It reminds me, as does another Wilm's mother's comment, of the reality of cancer. It's a hard slap in the face. But it forces me to take inventory and truly live for the day, each and every day. I'm not always this positive and upbeat...I'm trying very hard to stay on this path as it is where I need to be. I can't say I wouldn't crumble and fold if we were to hear some devastating news about Sicily's condition. More the reason for me to be the way I am right now. Things are still moving along smoothly for her.
I'm starting to be sad that Sicily will only have two more hospital stays as I have come to love so many of the people here at this hospital. I don't know if they will ever know how wonderful they are. We are made to feel special by everyone here. I love the ladies who deliver our meals...I love the staff who come in and clean our room...I love the nurses and techs who smile and laugh with us. I know they would probably cry with us, too! I love our doctors...they are human...and they are in this field of medicine for a reason. Sorry I'm rambling so much today...emotions are at def-con 4!
Sweet little princess is sleeping peacefully in her hospital bed. Daddy will be on duty tonight. I don't really want to leave her tonight with my sappy emotions the way they are. I won't be able to kiss her forehead whenever I want or rub noses, but I need to get over this allergy attack. I think Daddy needs to be with his little girl, too, after hearing the news of Pablo yesterday. Again, the reality is a harsh one!
I'm going to soak away the salt water smell stuck in my nostrils from today's excursion with a hot bath and will cherish getting to hug and kiss our other three kiddos goodnight. Hopefully, Patrick and Sicily will be able to be home late tomorrow night. Everyone have a good evening and please try to "live in the day!"
The Sicily report from Patrick this morning was good. She will, though, be receiving a blood transfusion this afternoon in between her Mesna doses. Her hemoglobin is dropping and will continue to do so. The vital life juice of a stranger is needed once again. Thank you, stranger, who ever you are! They will hopefully still be able to come home late sometime tonight. She told everyone she came in contact with on Wednesday that she was only staying two nights, as that is what mommy told her. Hope they don't have to make a fibber out of mommy!
Sicily and daddy spent a long time in the playroom painting pictures this morning. Can't wait to see those priceless pieces of artwork. Speaking of artwork, Aunt Pat was a walking piece of Sicily artwork herself yesterday. When I arrived back from the aquarium, Pat had pieces of tape with beads stuck to them hanging from each of her ears (Sicily jewelry)...tape on her calf with red marker all over it (Sicily tattoo) and the room was adorned with tissue paper flowers. Sicily was busy standing by her bed stringing beads for necklaces. Can you believe they didn't take one walk. They were too busy creating. I wish I would have hired a photographer to capture those five hours...what a memory! Thanks, again, Pat!
It is a windy day in Oklahoma (surprise, huh?) and I am hanging solo around the house for the first time in I don't know how long...and I don't like it. I should be conquering projects but my head, heart and soul miss Sicily so much today that I don't know what to do. I'm still getting a few things done so it isn't a total waste, but I'm ready for her to come home.
With the house empty and somewhat quiet except for Dean Martin serenading me with Italian love songs through the stereo, I let my mind do that rambling thing that it likes to do so much these days and this is what it comes up with. I guess you could call this an in depth description of "Me...Kerry." I could be described as a "middle of the road-er!" I am a liberal conservative...or a conservative liberal...I am about as middle of the road as they come. I like peace and harmony, but I also have causes and beliefs strong enough to fire up my engine. I like to see and attempt to understand both sides of any story. I am empathetic, apathetic, sympathetic, and sometimes too apologetic! I am good at putting myself in other peoples shoes to try and understand their thoughts, emotions and actions. I "feel" more than I "think." I crave understanding. I confuse and contradict myself sometimes, always and maybe never (see?!). Some days I don't even understand myself so how can I expect others to? Other times I am as easy to read as a Dick and Jane book! I love people! I love to watch and observe people. I love to learn from people...anything about life experiences, ideas, concepts, fears, excitements, beliefs...anything. I am molded and formed and influenced by people I surround myself with in life. Good, bad and even sometimes the ugly attributes I derive from others create the person that I am, but I try to retain the good and kick the rest of the junk to the curb! I try! I love believing in God! I love having faith in Him! I love seeing how He impacts peoples lives! I love seeing people rely on Him and continue to trust in Him even through the toughest and roughest diversities! I love to see people refuse to give up! I love making people happy and making them feel good. I easily get depressed when I disappoint myself by not being nice enough or patient enough, especially where my kids and family are concerned! I forgive myself, most of the time...still learning how to do that! I love color. I love how nature uses color. I love how God uses color to make us individuals. I love music! I love how it can play with my emotions...how it can relax me to sleep or make me want to jump around like a kid on a trampoline. I love life!!! We are only given one. There are no "do overs" and very few second chances! Live. Love. Laugh. Enjoy. Believe. Behave. Belong. BE!
Sorry I'm always so windy...this is still such a therapeutic outlet for me! Have a great weekend everyone and pray for NO RAIN in Oklahoma City on Sunday for the marathon! Sicily's "Pocketful of Sunshine" Wilm's Warriors will make their running/walking debut! I'll try to find out for those who asked about the t-shirts...not sure if we can get more ordered, but will definitely check into it. I have another t-shirt soon to be available (thanks to Aunt Bett's hard work) that I'll journal more about later! It's awesome and will be a fundraiser for pediatric cancer research!
Monday, April 27, 2009 8:45 AM, CDT
Good Monday morning,
I am still floating on the cloud I was riding from yesterdays activities. This will be a long post, so buckle down or save it for later when you have time to read it all!
I will start by saying how incredibly AWESOME the Oklahoma City Memorial Marathon was. What an experience! This was our first marathon...the first of more to come. I loved every minute of it. This was the brain child of Patrick's niece, Whitney Zeka-McFadden, who has participated in the marathon for several years. She came up with the super idea of having family and friends run to help bring awareness to Wilm's and pediatric cancer, in general, and as a special way to honor Sicily and her strength. We wanted a "signature" name to call ourselves, so everyone threw out ideas and Sicily chose the name..."Pocketful of Sicily." Whitney had bright yellow t-shirts designed with our name on back, along with marathon information and date, and "Wilm's Warriors" on the front (I think I've already described this on a previous post, but it brought about some amazing things!). We had over fifty shirts being worn yesterday...one by a full marathoner, one by a half marathoner, four relay teams (if I'm correct), five walkers and numerous supporters and cheerleaders
The morning began with us getting up at 4:45 and leaving my sister and brother-in-law's house at 5:20. Thanks to all of Whitney's advice on where to park and meet, we didn't encounter one problem. It was still dark as we navigated towards the start, which was in front of the OKC Memorial site. I was not completely awake yet (missing my morning cup of coffee) when my eyes fell on a familiar face and my first viewing of two beautiful yellow t-shirts, worn by someone other than the six of us. It was Ms. Sherri Ryker and her mom...two of our Wilm's Warrior walkers. I was so surprised as no one told me Sherri was going to be there to support us...something she has been doing long distance from the get go! I think that set the emotions in play for the whole day, not that I wasn't already riding an emotional roller coaster. Once we encountered the starting line of the marathon, I could feel the sense of awe that was building up around us. Being the people watcher that I am, I just soaked up the atmosphere. It was energetic, yet calm at the same time. You could see the serious look of focus on many faces. The man's voice announcing the days events was stimulating and encouraging and he helped build the levels that would carry us through out the morning. One of the most touching and inspiring moments was when he asked for one hundred and sixty-eight seconds of silence to honor those who lost their lives on April 19, 1995. The crowd buzzed and the noise level was not at a minimum until he asked for silence...and it happened. The hair stood up on my arms surrounded by goosebumps as the only sound that could be heard amongst thousands of people were the chirps of birds perched high in the trees watching over us. I spent the time in prayer, asking God to watch over this event and all who participated. We were there for Sicily's sake, as others carried their own personal stories, as well. When race time was about to begin, the electric energy mounted. First to start were the wheel chair marathoners. I didn't get to see them roll off, but witnessed several heading to the finish line later in the morning and it was so inspirational! Then the gun fired straight up at 6:30 and they were off... a sea of thousands of running shoe clad individuals of all ages, sexes, races and nationalities. It made a person want to jump the fence and take part! Next year I WILL be a participant and not just an envious spectator! Now I understand the draw and desire to be a part of a marathon!
After the marathon/relay runners were off, the 5K walkers lined up. Our five representatives excitedly took their place and as they passed the announcer, he yelled out over the load speaker "Go Wilm's Warriors!" Goosebump number two...of hundreds that followed! We had a little time to kill before Patrick and some of our other relay members had to shuttle to their spots, so we consumed a free pancake and sausage breakfast held at a beautiful downtown church. The accommodations were wonderful and Patrick asked one of the church members where he could make a donation, and the man simply replied, "No donations...just be blessed!" We felt blessed! Outside the church, we parted ways as the relay runners needed to head out, so the rest of us headed to our rondevous (sp?) point, the Bicycle Alley shop on Broadway...less than a quarter mile from the finish line. I can't explain the excitement felt as we cheered on the first yellow
t-shirt sporting Wilm's Warrior runner to head towards completion. Each subsequent encounter raised our levels of enthusiasm! We were seen and we were heard. I told my sister-in-law's we were "Proud, Bright and LOUD!" Do you expect anything less from the Zeka clan?! ; ) We also loved to cheer on everyone else, one of the things that makes a marathon so exciting and fun. Watching a soldier in full gear as he approaches the completion of 26.2 miles. Men and women past their athletic prime giving it all they've got. Young athletes just beginning their love of the sport. One vision that won't soon leave my mind is that of a women with a prosthetic leg, pushing a child in a wheel chair. By this time, I've lost count of my goosebumps...I think they've taken up permanent residence! I was aware that my good friend from Wellington, Kitchel, and her sister, Darcy, might be there so I was on the look out for them. At one point I saw Darcy run by and before I could yell her name, she ran past and yelled mine. I thought that was kind of funny...aren't the spectators supposed to be yelling out the runners names, not visa versa? Thanks Darcy! I didn't see Kitchel and was bummed, but did see another Wellingtonian (is that what we're called?) run by and that was Bob Bean. I looked for his wife, Valerie, as well, but didn't see her either. Guys, let me know if you want to sport a yellow t-shirt next year! ; )
As we are watching and cheering, Patrick's sister, Bett, came up to me with a young lady at her side. I can't recall her exact introduction as the shock smeared my memory, but she presented this young woman to me as a "Wilm's tumor survivor." Yes, my jaw dropped. Christine was diagnosed at the age of six sometime in the 1980's and just completed a half a marathon. I had the feeling this wasn't her first! She's married and lives in New Mexico and plans to have children. Her husband told her he swears he saw a bunch of people in yellow shirts that said "Wilm's" on them and encouraged her to find us...and she did. We took pictures and I gave her one of Sicily's CaringBridge cards in hopes she will contact me. That was so incredible! Yep, the goosebumps were here to stay! I thought I'd be exhausted from the early rise, but the opposite was in affect. Patrick completed his relay leg and reported that he still had energy left over. Now, that disappeared once we came home. It's amazing what a high level of adrenaline can do to the mind. He was making statements of running a half marathon next year. He recanted later! ; ) I won't hold him to it, but like I said before, participation levels will most likely increase next year. The Oklahoma City Marathon is going to be invaded with bright yellow t-shirts for years to come! We already decided to return...maybe even "LOUDER, BRIGHTER AND PROUDER!"
I want to thank everyone for making it such an awesome day and experience and for doing this in honor of our little "Pocketful of Sicily!" She may not understand for a very long time the impact of it all, but her mommy and daddy sure do! She, by the way, did absolutely fantastic. I took a stroller, but it was only used to carry a backpack and cooler and she spent most of the time pushing it around herself. She was such a trooper and put up with all of mommy's shutterbugging. I think the pint of blood she received Friday evening went into overdrive and worked wonders for her! I will try to put together a little picture montage of the day soon. Corinthian wants to help me do that, so that will be a good project for us to work on together.
Tomorrow Sicily has an appointment for a CBC in the morning at 9:00, and then an appointment with our new Pediatrician at 11:30 for her four-year-old check up. It will be a busy day. Isabella has her fifth grade program tomorrow evening. For safety issues, I will just take the boys and have daddy stay home with Sicily. We'll video and photograph so they will get to see it in one form or another!
Thank you all for praying for "no rain" on Sunday as God listened and delivered! And thank you for all the continued support, in whatever form it is given! We are so blessed! Have a great week!
I know I have said it before, but I have to say it again, this is an amazing family, the love and faith they have is so inspiring. I have always been involved with the American Cancer Society and Relay For Life, but when you see how cancer effects people, well all we can do it work harder and pray harder for a cure, so sweethearts like Sicily don't have to go thru it.
You only live once, but if you do it right, once is enough! Chemo Angel
Sicily is doing good. Her numbers are okay but will be doing their usual nose dive here shortly. She's full of her usual energy. We'll return to the clinic on Friday for another CBC. Her appointment with her new pediatrician went great. Other than being on chemo and battling cancer, she's very healthy. Sicily is in the 50th percentile for weight and the 75th for height. I'd say she still must be growing, even though she really hasn't put on any weight since diagnosis last August. We've just been happy that she has been able to maintain.
Now, to the not so good news...not about Sicily. As I am sure many of you are already aware of Esther's condition after receiving a CaringBridge update...she is on her way to earning her Angel's wings. Here is her site again, www.caringbridge.org/visit/estherjoy. The petitions for a miracle are coming to pass as the cancer is everywhere. Now we need to pray for her comfort and for peace for the family. Her parents, Adam and Jennifer, are absolutely amazing! Their strength comes in knowing their precious little girl will soon be in the arms of Jesus and they already know they will see her again! It doesn't mean they won't be overcome by grief and sadness won't linger, but they seem so prepared and are so very strong. They truly made a huge impact on me and changed a lot of my ways of thinking when dealing with the unknowns of pediatric cancer...and life in general. Please continue to keep them and their young family in your daily prayers!
I also want to share a little tidbit about our Wilm's warrior friend, Hollyn. She is quite the celebrity, all the while battling for her own young life. I hope you don't mind, Jennifer, that I'm sharing Hollyn's interview, but it was soooo good and I want everyone to see what the Beads of Courage are all about. I treasure Sicily's ever growing bead story. We leave them hanging on the stair banister in the living room so we can see and touch them whenever we want. I hope this link works - www.wisn.com/video/19300295/index.html. If it doesn't, well, I tried! It's a very sweet clip and I love getting to hear our sweet friend talk!
Update on the marathon...Patrick looked up on the marathon website last night and found that his relay team came in 90th place, out of something like 600. We weren't racing for times. One of his team members even waited around for his wife so they could run together. I thought that was so sweet. So, I am making a mental (and I guess this makes it a verbal one, too) declaration that I want to run as part of a relay team next year. I want to run the last leg, which is the 10K I believe, as does Patrick, so we can finish together and run past the finish line with hands held. Now, this will be a huge thing for me as I am not a runner. But, if I start now, I have a whole year to whip myself into shape and run for my daughter! It's hard for us to make plans a whole year away as we have no idea where we may be in this cancer journey. Sicily could be running around with long brown hair flowing behind her as she gets into constant mischief or she could be laid up in a hospital room receiving chemo for a relapse. But who ever knows what life holds ahead of them, so we will work towards this and pray that this little dream I've concocted can come true! Also, we have dreams of sweeping the marathon with dozens of yellow Wilm's Warrior t-shirts next year. I have already been contacted by others wanting to join and our philosophy will be, "The more, the merrier!" By raising awareness for Wilm's, we are raising awareness about pediatric cancer, in general, and will hopefully increase research funding that could lead to a cure!
Corinthian and I have started working on a picture montage of the marathon and will post it on here when we complete it!
After Sicily's appointment this morning, we ran a quick errand to Target to get some essentials...like her favorite pink cotton candy sherbet push pops she likes to eat after receiving her GCSF shots. I don't usually take her shopping like that but we take protective measures and she wears a mask and rides in the cart for the most part. As we were preparing to checkout, we stood in line behind a very nice lady who made small talk with Sicily and to my surprise, Sicily talked back. I could tell that Sicily was making an impression on this woman in the short amount of time we were in each others presence...as would any bald, mask wearing, eyelash-less little cancer child would. From what I could tell, she was purchasing a bunch of Target giftcards, and before she left, she looked at me and asked, "Mom, would it be okay if I gave her a little gift?" I replied that she didn't have to, but she asked, "Please?" I smiled and she handed Sicily a ten dollar gift card and told her the next time she came in to go pick something out for herself. It's times like that when I really have to bite my lip and attempt to keep it together in public. I get very overwhelmed with the kindness and generosity that has been shared with us.
I've fallen WAY BEHIND on thank you notes and still have intentions of completing them one of these days, even if I am a year late. At times it is very overwhelming! I just want everyone to know how grateful we are...a paper thank you note can't even express our appreciation! As I have said before and will continue to say time and time again, we are TRULY BLESSED!
I think that's about all my news for today! Like I don't ever have anything to write about! That'll be the day! One more thing that I keep forgetting...if you want to see the picture of our covergirl model, go to www.jltulsa.org and click on Gusher on the left hand side. I'm so proud of her! ; )
Another update on the Zeka clan...
Wednesday, April 29, 2009 11:47 AM, CDT
Windy, Windy, Windy! And I'm talking about this journal entry and not the usual Oklahoma weather. Speaking of weather, though, it's a cloudy, thundering rainy day here in the Tulsa area, but the house is still bright and cheerful with our little pocketful of Sicily running around. I have just returned from a dental check-up. I just love how my teeth feel right after a good cleaning. Makes me want to avoid eating anything for awhile as to not mess them up. What a great diet plan that would be! Unfortunately, that goes away pretty quickly when I give into the call of my stomach for nourishment.
Corinthian and I attended Isabella's fifth grade music program last night. I had Elias stay home as he already watched the performance at school in the afternoon and he had reading homework. So we went with cameras in tow and had a good second row seat. There were three combined fifth grade classes with a total number of seventy-six students (if I counted correctly). The show was called "Destination Rock 'n' Roll" and Isabella had two speaking parts in it. Elias reported when he came home from school yesterday that, "She didn't even mess up once!" I knew she would do great! The music was fun, upbeat and familiar...I found myself tapping my foot and nodding my head along with the beat. As the performance came to a close, the music teacher, Ms. Matlock, explained that each year they choose a student from each one of the three classes for a music achievement award. It's basically an honor for "giving it your all" during music class. The kids chosen will get to go out to lunch at a restaurant during a school day with the music teacher and fifth grade teachers, as well, who all took part in the decision process. This year she said that there were so many students who fit the criteria that they decided to do an honorable mention. I hoped Isabella would be named as she has such a love of and passion for music. There were probably six or more names called, but none were Isabella's. I sat and prayed, "God, please let Isabella's name be called...this would mean so much to her!" The first student called for the achievement award was a young man with lots of enthusiasm...then the next name, another boy. Finally, it was time to announce Isabella's class recipient and before she announced the name, Ms. Matlock explained there was a tie and no way to break it, so both students would get to go out to lunch. First name was..............................."Isabella Zeka!" Of course, I had already put the video camera away, but not that it would have mattered...tears were rolling and my vision was impaired! And another boy was named as the other winner. This kid was so cute! He sang a Buddy Holly solo earlier in the show. Any kid that can don horn rimmed glasses and sing "Peggy Sue" is already a winner in my book! We are so proud of Isabella. She still has a lot of struggles academically, but she is such a hard little worker and I am so glad she enjoys music so much. I emailed her music teacher to thank her for all her hard work, and told her that I don't know if Isabella possesses any talent, but she has passion and desire and that alone can take you far! So "Yeah Isabella!!!"
Looks like today is going to be a good laundry day. Can't go anywhere anyway! I think we are supposed to get rain pretty much most of the day. Sicily is by my side, as well, as the thunder that bangs through the sky creates what little fear this gal has! I just tell her it's another way for God to get our attention. If she asks, "For what," I'll reply, "That's for us to figure out!" Everyone have a great day. Again, I posted a "blurry" picture montage of the marathon up under "Resources" if you're interested. It's long but if you need to kill about twelve minutes, it goes by pretty quickly! And I will already tell you that I will be accepting and soliciting for more marathoners, relay runners and walkers for next years event who want to wear the yellow t-shirt! I am to be receiving some extra shirts that were printed for those who asked earlier. Sizes are limited and vary so email me at firstname.lastname@example.org and we'll go from there. I'm starting to feel like I have maybe finally found my calling (it doesn't have a name or description yet) after almost forty years of life through my daughters battle with cancer. I'm still a work in progress but plan to be until about age ninety! ; ) Time to go dirty up the teeth! Love to you all!
This will be another doosy, so sit back and be sure to have a box of kleenex handy! I got to kiss an Angel today!
Sicily had an appointment this morning at 9:45 for a CBC. Of course, I'm running late and didn't get there until a little after 10:00. I told the receptionist that she needs to start telling me our appointments are fifteen minutes before their actual times so I have a fighting chance of getting there ON time! I've done pretty good until just recently. I guess I'm becoming a little lax. Sicily's numbers are on the low side at 700, but nurse Terri thinks they will be on the upswing. Never-the-less, GCSF shots will continue until another appointment next Monday.
As Sicily and I went to the playroom to wait for the lab results after her blood was drawn, I sat in a chair that directly faced the partial glass door leading to the play room. Any other seat and I wouldn't have been able to see people in the hallway. We were only there for a few minutes, when I looked up from the word find puzzle I had just begun to see Esther's mom, Jennifer, standing outside one of the exam rooms talking to a doctor. I told Sicily that I thought Esther might be here and did she want to go see her. I knew her answer would be, "Yes!" So we gathered up our stuff and walked down the hall to the room. I peeked in and gently waived at Jennifer while she was standing by Esther who was propped up in a wheelchair. Before I go on, I have to describe how absolutely beautiful Esther looked. Even at death's door, this little girl is stunning...and I'm not just talking about outward appearances...she is utterly beautiful so deep within!
Jennifer came out into the hall and we hugged. I didn't want to ask any questions, I just wanted her to know that we are all still praying. She is functioning on very little sleep these days acting as Esther's twenty-four hour a day nurse and care giver, but she had so much to tell me and my ears were so ready to receive her words. She told me about how their other children are dealing with the situation and their means of coping. They have talked to them and explained things along they way. Even though they are very young, they are understanding and they are dealing. One of their sons is coping in his own unique way. He doesn't want his sister to die...he wishes the whole family could die together so they could remain as a family when Esther's time to go to heaven arrives. He wants to be able to continue to play with her. This out of the heart and mind of a boy around the age of five. To hear those words just broke my heart even more. These are the thoughts of a very young and wise little man. How can he even begin to understand why this is happening! But I still stand in awe of how Jennifer and Adam use this life altering experience as a witnessing tool to share the love of Christ! And Esther, too! I was able to kneel beside her and kiss her on the forehead. She is very tired and keeps her eyes closed most of the time, but she was aware I was there. As I began to talk to her, she turned her head and looked me in the eyes. I had been crying, but told her the only reason I was crying was because I was jealous that she was going to get to meet Jesus before me. And would she please give Him a hug from me. She nodded her head, yes. I told her I loved her and she said, "I love you, too!" Could I have asked for anymore? No!
Jennifer showed me the little gold necklace hanging around Esther's neck that held a heart shaped locket. The locket contained a tiny picture of Esther's horse, Gordon, that she loves so very much. Gordon will miss his best friend, I know that. Esther loves horses, and someone, out of the goodness of their heart, "gave" Gordon to Esther. She was basically the honorary owner and her only responsibility was to ride and love that horse as much as she could. And she did!
Back to this morning, I did finally get the nerve to ask Jennifer what the doctors were saying in terms of time for Esther. She said, "Really, anytime." They had speculated a week, and that has already come and gone. I am sitting here still in awe of God's use of timing. This week really should have been a Monday/Thursday schedule for clinic visits for us, but for some reason (and now I know why) I changed it to a Tuesday/Friday. Had I not sat in the chair in the playroom where I had, I most likely would not have had that quick glimpse of Jennifer as she peeked out into the hall. I will never be able to explain in words the feelings and emotions I experienced this morning. As hard as I may try, words will not do them justice. I should have left the hospital feeling extremely sad and down, but I left with my heart swollen with love and peace and awe! Knowing Esther and falling in love with her made me want to know Jesus even more and love Him even more. If that is not the work of God, then what is? That is how I can honestly explain "why" something so terrifically horrible like childhood cancer happens. This doesn't mean that I won't be shedding any more tears over Esther or my own precious daughter, but it helps me to come to grips with the question every one of us pediatric kid parents have asked God..."Why?" I still may not be able to answer in words to others, but in my heart, I know the answer.
One thing Jennifer has regrets over with Esther is that she did not video tape Esther running and laughing and playing on those days when she still felt good. Now she will have to rely on her memory for those visions. Patrick and I have always loved filming our kids. I constantly click away with my Olympus, and he's good at documenting life's little experiences with the good old little Sony handycam! One of Sicily's favorite things to do is watch family videos. Even ones of her siblings before she was even a sparkle in my eye. I'm glad that won't be a regret we will ever have. Like I said, Sicily and I left the hospital with a sense of peace. The skies were unloading their own form of tears in the way of a heavy rain shower, but I was just feeling so very thankful to God for giving me that moment and memory with Esther and her parents!
I wanted to share a little clip my sis Bett sent me this morning that a friend of her's had sent to her. Her friend is the father of a son who is surviving leukemia. This little video, if I can get it to work, is of Steve Harvey...a well known comedian. He is performing in front of a secular crowd at what I'm assuming is a "Kings of Comedy" show. It is moving and utterly awesome...and I am so excited that Esther is getting ready to be literally introduced to the man with whom Steve Harvey speaks of. I added the Youtube link up under Resources if you are interested in a little goosebump experience. I keep playing it over and over. I love it!!!
I'd better sign off for now as little miss wants some attention and mommy wants to give her some! Love to you all and God bless. Have a great weekend!
You may view the video by going on Sicily's Caringbridge site.
Just a quick update. Today and tomorrow are busy days, so I'll be able to hopefully journal more on Wednesday. Sicily had an appointment for a CBC this morning and Patrick made a comment last night that she had to be well over 10,000 on her ANC because she was like a little pink rubber ball bouncing off the walls. I had a feeling she would be high, as well, as she complained a little about her head hurting. Now we know next time to end her GCSF shots when that happens because today she's 19,000 (remember, normal is inbetween 1,400 and 6,500). She's well on her way to super woman powers. She did voluntarily take a nap on the couch this afternoon. Must of been exhausted from all that "pinging" from last night. She woke up twice in the night and came all the way downstairs to inform Patrick and I that Isabella was stealing her Hello Kitty blanket from her while they slept. But apparently somebody wasn't sleeping to know that it was being stolen!!! Today she told me that she can sleep in her own room now because she is four. I'll believe that when I see it! ; )
We're all doing good. Just really busy with end of school activities and appointments. Have a good evening!
As you can probably surmise, we've been super busy this week. Sicily is be-bopping around like a four-year-old little girl should be. She's full of her usual spunk and energy, and we continue to feel blessed by her happy-go-lucky disposition! She flat out exhausts us, but "thanks be to God" for that!
School activities for the other three kids are in "end of the year" high gear, which is exciting but tiring. They don't officially get released from school until May 28th as they have to make-up some snow/ice days. I'll admit it will be tough to get motivated those last three days after Memorial Day weekend, but they will be there. We will be spending that weekend remembering and honoring my Uncle D Kincannon who passed away on Tuesday. He was an awesome man and I grew very close to him in my teenage years. I am sad, but I know he was tired of his health issues and was ready to go. I loved him dearly and have so many wonderful and often very comical memories of him. He was one of the most intelligent people I've ever met and was extremely quick witted. I remember my grandma telling me stories about him when I was little about how she used to let him skip classes in high school because they were "too boring" for him. He already knew most of what was being taught, so he'd go bird watching. He served in the US Navy during the Korean War and graduated from Phillips University were he studied mathematics, philosophy, German and English. My question is why did I not received any of those genes? He spent most of his life working with the Army and Navy engineers and also the British Royal Navy. Did I mention he was a really cool guy? I will miss him very much but am so glad he was a part of my life and my family's life. When Corinthian was little he used to refer to him as "that boy." Quite a compliment to a man in his sixties. Uncle D lived to be seventy-seven. Again, my memories of him I will always cherish and the thoughts and life experiences he shared with me will be continue to live in my heart and in my mind. God bless you, Uncle D!
Through my uncle, I witnessed and observed someone who had regrets in his life, along with the many amazing accomplishments. I know he regretted getting a tattoo as a young sailor in the 1950's. But he was young and that was the thing to do. Regrets can weigh heavily on people and ruin their "here and now." I have regrets but try very hard to not let them interfere with my today and my tomorrows. Some decisions I can honestly say I've made without one single regret! That provides such peace of mind. Though I miss our family and friends in Wellington, I do not have any regrets about our decision to move. I can see in hindsight and with foresight that God has brought us where He wants us to be for many, many reasons! Case in point, I think Patrick and I worried about Corinthian the most when it came to making the move from Kansas to Oklahoma. He was happy in Wellington...we were all happy! But he was a twelve-year-old boy in middle school...would this devastate him or create horrible anxiety? Possibly. But that did not happen, and I'll share with you why.
Many people often question how our other three kids are doing under the circumstances... having a younger sibling battle cancer can take its toll on them even though they may not be aware of it. But for Corinthian, God sent an amazing young man to befriend him. I have to share this little story. I attended a "Spring Spectacular" at Corinthian's middle school a week ago that was a forum used to showcase the students and their accomplishments. I was able to see some of Corinthian's creative artwork and read some of his poems that were Language Arts assignments. We were just about to walk back down the hall to exit the school when Corinthian noticed a paper hanging on the wall written by his friend, Sam. I stopped to read it as the title of the paper caught my eye. It was titled, "Corinthian, by: Samuel Kesler." After I read it and had both tears in my eyes and a chuckle in my belly, I took a picture of it so I could read it to Patrick at home. I also, after the fact, asked permission from Sam to share his writing on Sicily's CB site.
Here is his what he wrote: "Just like his name, Corinthian is a fun and unique individual. When I first told my dad about him he asked, "What's his brother's name? Second Corinthian?" Corinthian didn't know it, but my family had a good laugh at his expense. He may not stick out in a crowd to some people, but once you get to know him, he gets lodged in your brain. He has fine, dark, brown hair, large green eyes, and a contagious smile. It seems like Corinthian always has a grin on his face, and when he doesn't, the mood of the room seems to grow dull. Whenever he wants to tell me something funny (or what he thinks is funny) he always says, 'Hey Sam, guess what!' While looking really excited, like whatever he wants to tell me is fantastic or hilarious or something. I could sit all day and list the great things about him, but to sum it up, Corinthian is a good and loyal friend." Again, I stood in hallway in my son's school with tears in my eyes reading an exact description that I, his mother, could not have written better. So, rest assured that Corinthian made the transition and has support in place to handle whatever life may throw at him these days. Sam was definitely an answer to many prayers, but I suspect mainly one sent by his Grandma Zeka who worried about him as much as we did!!!
I apologize for rambling so much. Even though this site was created to keep everyone stay afloat of Sicily's journey with pediatric cancer, it also serves as a "life journal" for me. Every happening or event, no matter how big or small, affects each of us on a daily basis. My uncle's passing has had an affect on me this week. Maybe that's one of the reasons I haven't sat down at the computer the way I usually do as I've had to let myself "feel" my way through this event. Thanks for letting me do so!
Sicily does not have to visit the clinic until a week from today when she will be inpatient for a five day chemo treatment...her last "long"one, as she refers to it. After that, she will have one more three day treatment the first week of June. We will be excited, but with our usual guarded emotions. We are excited, though, as we received the call we've been waiting for from the Lighthouse Family Retreat in Florida, and we've been invited to attend in July. YIPPEE! "Sandy beaches here we come!" The kids are equally excited about getting to fly as we haven't flown anywhere in years! We've been putting the miles on the tires of the family truckster the past several vacations. Fun, but fatiguing!
Everyone have a good evening! Thank the Lord our friend Hollyn is doing better, and please continue to keep Esther's family in your prayers...no current news on her.
Please accept my apology for not journaling much this past week. I'm happy to say it was because we were so busy living, loving and laughing! But my heart is broken tonight as many of you are already aware...our precious little friend, Esther, earned her angels wings yesterday afternoon. As many have already thought and spoken the words I've had running through my head all week...we knew this day would soon come, it still does not decrease the ache I feel inside. I am relieved Esther no longer has to suffer the excruciating pain. I know exactly where she is now and whose hand she is holding! But tears still fill my eyes. At the same time, I feel a sense of pride having known this little girl and witnessing her overwhelming love of our Lord! God did not take her away. He in a sense healed her of the cancer and brought her home to help watch over those she loves. I know one of the things I've heard and read about other parents who have lost their precious child remark that they just don't want their child to be forgotten! I have faces and names permanently stamped in my heart of several wing wearing wonders...Chelsea, Cole, Sigrid, Jake, Gabriel, and now Esther...the list goes on. I will never forget these children as long as I live. Their passing helps fuel my desire to love life...no matter what it brings! Life is truly a gift and to think of it any other way would be wrong! And I want to embrace and hold and smooch on my kids a little more every day! I know they think their mom is an over emotional sappy wet mop...but there is no denying they feel loved! I love them so much!
Despite guarding Sicily from much interaction in the general public, I will be taking her to Esther's funeral on Tuesday. It's just "that" important. She is not old enough to grasp what is going on, but I feel we both need to be there! Thank you to everyone who has lifted this family up in prayer and I ask that you continue! I pray that Jennifer and Adam will be able to get their first full night of sleep in who knows how long sometime soon! I pray they continue to feel the compassion and care that has surrounded them these last several months. I pray they have at least some form of peace knowing that Esther Joy will never, ever be forgotten! Her life was not in vain. It was short, way too short, but it had a clear and present purpose! And I think we all know what that was! God bless you, sweet Esther! I will always love you!!!
I've been on a "de-cluttering" mission the past several days. I'm tired of the state our home is in and want to attempt to get rooms in order. I still have painting projects that I want to complete, but those can't even be a consideration until things around here find a home, are placed in the goodwill box (boxes, actually) or meet their demise in the green trash can sitting by the curb! It's a slow and sometimes painful process for me as I find some needless useless objects to be very sentimental and have a hard time parting with them. And the decision to part with them has to be "MY" idea...otherwise the blame of having to get rid of something that held a memory is not a fun albatross to carry! I am my dad's daughter...I save things as I never know when I might need them for some reason or another. I hate to be wasteful. But my desire to have things in order around here is driving me to take control of my "vice" and purge. I had some boxes stacked in the corner of our bedroom that I managed to go through this afternoon and did a good job, I think, of letting go. Sicily came into the room from a nap in the living room and in an excited voice said, "There's a door there?!" Yes...there is a door there that leads out to the deck. She had no idea it was there as it has been camouflaged by moving boxes for months. What can I say...I'm trying! I'm trying to be patient with myself and set small goals that are attainable so as to reach my goal of a "clean house!" That explains one of the reasons I haven't been on the computer much lately. That and the fact that we were experiencing internet problems for a bit only to find out the connection to the wall was loose. I was still frustrated at the number of times I lost guestbook entries on other people's sites due to the interruption in service. I have a lot of catching up to do! I will hopefully have the chance to do a little when Sicily goes inpatient on Thursday. It all depends on how much time she will allow me to peck away on the computer. I can usually squeeze in an email or two between walking rounds on the third floor. I'm getting to where I am looking forward to seeing some of the familiar faces we are used to seeing every three weeks at the hospital! But I will also most likely still be nurturing a sadden heart as I pass by the rooms we used to visit Esther in. Room 319 was the one I will never forget...all the colorful coffee filter butterflies hanging from the ceiling...pictures of Esther and her family on the door...stuffed ponies guarding the head of her hospital bed. The room was filled with such happiness, such hope...even though darkness loomed and attempted to penetrate through the cracks. Like I've said before, I don't question "why" anymore. No one has an answer that is good enough for me to believe. It is just God's will! I just wish this sort of situation didn't have to happen! Because it does, and will continue, unfortunately, I will try to use this experience as a constant reminder to never take things for granted. Life is so very precious!
I'd better attempt some sleep. I'm not looking forward to tomorrow morning. How do you mentally prepare yourself to attend the funeral of a six-year-old child? Sicily still says a little prayer for Esther every day, usually around the dinner table. I tried to explain to her that Esther is now in heaven with God. Her reply was, "Our God?" Yes...OUR GOD, our AWESOME GOD!!!
It is a rainy day, again, in the greater Tulsa area. Befitting for the funeral of a six-year-old little girl. Sicily and I drove to the church which was on the other side of Tulsa from where we are located, but since my mind was so deep in thought, it was like we had jumped on a magic carpet and were sitting in the parking lot in no time. I felt strong this morning, especially considering I was holding the small little hand of precious Sicily. She had no idea what was in store and why we were there. We stood in a very long line of mourners waiting to sign the guest book and take their seat in the church pew. The church was packed, as I had expected it to be. Standing in line, I saw several familiar faces...some of our wonderful nurses and techs were there. I think Sicily had to take a second look as she is used to seeing them in fun and colorful character scrubs, not in "normal" clothes, as I'm sure she would call it. One of them told me a section had been reserved for the medical staff and invited us to sit with them.
After I signed our names in the guest book, we walked down the isle of the church and as my eyes fell on the casket displayed in front of the podium, I could not hold back the sting of tears welling up in my eyes. Once I started, I knew I wouldn't be able to stop. We sat down right behind Sicily's oncology doctor, Martina Hum, whom we adore! I dug out my package of kleenex from my purse...luckily it was full and they were the strong and sturdy kind. I tried to read through the little program that was handed to me through my tears. It has a beautiful picture of Esther on the front and says, "Forever in our Hearts." That is an understatement!!!
The service was beautiful, as I knew it would be. One of Esther's aunts played a piano medley of "Jesus Love Me." She along with four of her other sisters, Jennifer's siblings, sang together as well. I think the hardest most touching part for me was when Esther's daddy, Adam, stood up in front of us all, heart in hand, emotions exposed and spoke to us all the while the casket holding his precious daughter lay before him. The tears continue just thinking about it. No father should have to go through what he was having to go through. But Adam and Jennifer continued to handle all of this with such grace. And it was such an honor to be present in that grace! I dreaded having to attend this funeral this morning, but as I sat there with my arm around Sicily, I didn't want to be any other place in the world at that time!
When the service came to a close, the casket was opened to reveal Esther...beautiful, sweet Esther...who looked to be sleeping and dreaming peacefully. I held Sicily as we said our final farewell to our little friend. As we were preparing to leave, I had the chance to hug Jennifer. She whispered in Sicily's ear, "Do you know what's up there in that box? That's just Esther's body. She is now in heaven with Jesus." And then she smiled. She added that her son, Jonathon, has already decided that Esther is probably up there riding dinosaurs even as we speak.
On our way home, Sicily asked, "Mommy, why were you crying in that church." I explained that I was sad because I would miss seeing Esther, but was also happy that she no longer hurt anymore. I said, "Esther's body couldn't get rid of the cancer, so God took her to heaven to live with Him. That was only her body, her vehicle she used on earth. She doesn't need it anymore." As usual, inquisitive Sicily asked if she still needed her body. I said, "Yes, you do. That is why we are trying to fix it." Not the usual conversation a parent has with their four-year-old. But, I'm glad with my decision to take her. I'm sure she will have more questions and I hope I can provide more answers. It is raining hard again as I type this. It makes it easy to let go of the remainder (hopefully) of my emotions! I will sign off for now. All I need is for the power to go out and lose my journal post.
The sun is finally shinning here today even though the wind is blowing hard and forceful. If you are familiar with the song, "Oklahoma...where the winds come sweeping down the plains..." That is no joke! The winds blow here and they blow with fervor! We have a chance for severe weather tonight. Let's hope not! The young occupants in this household don't like the sights and sounds of a thunderstorm and are fearful of its occurrence! Especially minus the safety we felt in Kansas when we were used to having a basement. Alertness is key, so I may be up late watching the weather news. I can plan on taking a nap with Sicily tomorrow when she goes inpatient.
I'm doing okay even though I could still break down at the slightest thought of yesterday's event. I know this wound will take some time to heal. I wanted to share the beautiful poem that was on the back of the program from Esther's service yesterday. Luckily, my tears didn't remove the ink printed on the paper and it is still readable!
A Child Loaned
"I'll lend you for a little time
A child of Mine, " He said,
"For you to love while she lives
and mourn for when she's dead.
It may be six or seven years
Or twenty-two or three,
But will you, till I call her back,
Take care of her for Me?
She'll bring her charms to gladden you,
And should her stay be brief.
You'll have her lovely memories
As solace for your grief.
I cannot promise she will stay,
Since all from Earth return,
But there are lessons taught down there
I want this child to learn.
I've looked this wide world over
In my search for teachers true,
And from the throngs that crowd life's lanes,
I have selected you;
Now will you give her all your love,
Not think the labor vain,
Nor hate Me when I come to call
And take her back again?
I fancied that I heard them say,
"Dear Lord, Thy will be done,
For All the joy Thy child shall bring,
The risk of grief we'll run.
We'll shelter her with tenderness,
We'll lover her while we may,
And for the happiness we've known,
Forever grateful stay
But should the angels call for her
Much sooner than we planned,
We'll brave the bitter grief that comes
And try to understand."
Edgar A. Guest
I'd better get back to packing while little princess is asleep on the couch. One more thing...she may be in a print ad for the hospital's radio-thon...the one that I did the interview for. The hospital foundation rep called me on Monday to ask if I thought Sicily would want to be photographed for the print promotion. "Are you kidding me?" She gets to wear some fun costume, maybe a princess, and will be photographed with some other frequent IV tower toters. It may take place on Friday. I'll let you know how it goes. The bonus is she gets to keep the costume she wears. Halloween 2009 may be taken care of! ; ) Love to you all and thanks for sticking with us!
We are settle into our hospital room, #318, here at The Children's Hospital at St. Francis. Sicily is hooked up to her fluids and is now taking a nap in her little child sized hospital bed. As we were downstairs in the clinic, I wondered what room we would be placed in. We have yet to stay in the same room twice. There were just two rooms I didn't think I could handle being in...rooms 317 and 319. They were the two rooms Esther stayed in the two times we were inpatient together. I'm still nurturing some pretty raw emotions and just the thought of being in either of those rooms was a bit much for me. So guess what room we are in? We are safely sandwiched in room 318...right between those other two rooms...and I couldn't have picked a better place to be. It's comforting somehow! I just continue to pray that the Travis family is finding comfort on this day and all the days that lay ahead!
On a personal note, I finally had my very overdue physical last week (almost a year past due) and I'm in pretty good health other than being vitamin D deficient. Of course I have no medical background and had to research what that meant, and low and behold, now I have an answer to all the things I've been complaining about lately...mainly my fatigue. Normal levels of vitamin D should be in the 50 to 60 range...I'm at 7. Ooops! So, hopefully the prescription strength vitamin D pills I have to take twice a week will help me feel more energetic! I'm in need of some energy! But at least I'm glad to know what has caused it!
The other three kiddos are doing fine. I think they are ready for summer break, aren't we all? Patrick will be taking Corinthian to OKC on Saturday to play the piano in the state competition. He'll do great! Isabella got to eat out with her teachers for lunch yesterday for her music award and reported having such a good time. She even got to ride in one of the teacher's convertible. She was made to feel very special! Elias brought home a button and said his name was said over the intercom at school for being a "Mini Math Master"...he correctly answered 100 math equations in a specified amount of time. He was so proud, and we are, too! He's going to be good at math like his daddy and brother. Poor Bella and I, our minds just can't wrap themselves around those old numbers. We're "word" women! ; )
I have to share a quick story about something Sicily said yesterday. Patrick and I have a long standing personal joke between us about who is the "martyr" of the family. It usually comes up when Patrick slaves away at the kitchen sink washing dishes and loading the dishwasher (which I completely appreciate that he does). So it's safe to say that the word "martyr" has been tossed around quite a bit in our household. Yesterday afternoon, Sicily and I were up in her room as I was packing for her and she decided to make her bed and fold all the little baby blankets she loves to play with that were scattered about the room. When she was about done, she let out a big sigh and replied, "I'm the motter!" Yes, honey, you sure are! I guess I need to educate the kids on what a real martyr (or motter) is. I called Patrick and told him we may need to come up with another term! ; )
I didn't get a chance to finish my cup of coffee at home this morning and still managed to be late to our appointment. I'm getting sleepy sitting here in this dark hospital room, so I may curl up in the chair and rest my eyes. I will be praying for Sicily to handle her treatment just as good as she has in the past. I pray for no major side affects or set backs. She has come such a long way and the end is just around the corner, hopefully! Everyone have a good day!
We are doing good...wrapped in the safe walls of this hospital and surrounded by loving, caring staff! Yesterday, Sicily had an Echo performed as it was called for in her roadmap. I can't tell you how nice it is that everything is brought up to her room. There is no trauma of having to leave the comfortable confines of the hospital room...the machinery and staff come to us. Sicily was napping when the big portable piece of impressive machinery was wheeled in by a super nice man, named Rex. Rex explained to Sicily what he would be doing and that nothing would hurt. He brought a sense of calmness in with him, as well. He also told Sicily about his long hair that was pulled back in a ponytail. He told her that he likes to grow his hair out as long as he can and then cuts it off to donate to have wigs made for people like herself who have lost their hair during their cancer treatments. He said he's done it several times. It's encounters like this that really affect me and are so moving. Here is someone who through his job is moved to do something, as so many people are. His contribution is made through donating his hair...every gesture, no matter how big and significant, or small and unnoticed, makes someone's life a little easier. Again, I am so moved!
Sicily's Echo, by the way, came back with good results, which is a huge thing. The Doxorubicin chemo has a serious side affect of damaging the heart. It can show up years from now, but just knowing that her heart is functioning normal right now is comfort. One day at a time!
Super hero Sicily made her debut this morning. The hospital foundation rep brought her a bright hot pink super girl costume to wear for the photo shoot this morning. She couldn't have picked a better outfit...it was absolutely perfect with the big "S" on the front. She transformed into "Super Sicily"...conqueror of cancer, protector of happiness and able to steal hearts with a single smile!!! She was precious! They took pictures of her with two other little boys downstairs in the hospital lobby...one was batman and one was superman. What a site! Sicily was the only one inpatient with her IV tower in tow, but that was just part of the picture. She gets to keep her costume so we now have Halloween taken care of! I expect Super Sicily to make many more appearances. They would like for her to attend the radio-thon dressed up in it, so we will plan on it!
We are awaiting the visit of Aunt Bett and Aunt Val who will be spending the afternoon with Sicily so I can run home and pack for the other three kids who will be going to Wellington, KS for a visit.
Everyone have a great and hopefully sunny weekend! We love and appreciate each and every one of you more than you will ever know!
Sicily is doing good. We should be kicked out of here by this evening sometime. She has finished her chemo treatments and still has a few Mesna doses left. And, constant hydration still drips and pumps into her little body. When we get home, we still have to make sure she drinks and uses the bathroom often to flush the rest of the chemo out, or otherwise we'd have to stay another night. We make a strong promise to do what needs to be done!
This has been another one of those inpatient visits that will leave many lasting impressions and thoughts imprinted on and running through my mind. I've had several conversations with some of our favorite nurses, like Andrea, Amber and Kathy...all of whom were in attendance at Esther's funeral last week. These are special people beyond anything I can even explain! They have such a purpose in life that they themselves may not even understand, but they do what they do for a reason! And I feel like even though we only see them here at the hospital for a few days, weeks apart, they are a part of our lives. One thing I learned is how much they would love to see the little kids they've cared for "after" they have completed treatments. The pediatric oncology nurses in the clinic get to keep up with the kids more as they are still seen in the clinic from time to time. But once the child and his or her parents pass through the double doors and enter the elevator that carries them down from the third floor of the hospital after that last treatment, they don't get to see what their efforts helped produce...a healthy kid. So I've vowed to myself, and them, as well, to check in every so often once we get our "permanent" (hopefully) walking papers! We've felt a great deal of support here and will forever be thankful.
Support comes in all ways and forms. It comes from other parents of children dealing with life spent in and out of the hospital. One particular case, there was a precious little boy here this time who's mom took an interest in Sicily. I believe this little guy was here for surgery, though I am not for sure what his situation was. His family is from India, a place that now holds a special spot in my heart as it was important to Esther and her family. This little guy's mother said they have been in America for five years. She was as sweet as could be. And even though her accent was hard for me to understand what she was trying to say at times, her smile and kind words were enough for me. She told me many times that she would pray for Sicily. She and her little boy came by this morning to tell us good bye as they were being dismissed after three weeks (we definitely could relate to that!) inpatient. They returned a little bit later with a gift for Sicily...it was a blue stuffed elephant. She said it was for good luck! To my understanding, the elephant is a very special animal in the Indian culture. I heard Esther was able to ride one on her brief stay there. So, along with Hope and Faith Bears that have accompanied us on every hospital stay, we now have a little Luck, as well. A little bit of luck can't hurt anyone! ; )
Patrick and the kids had a good weekend and were able to make a quick trip to Wellington. Corinthian received a 1+ rating at the state piano competition in Oklahoma City on Saturday before heading to Kansas. He was very happy and proud of himself! One of the most important lessons his first piano teacher, Hankie, instilled in him about playing in a competition was that if he makes a mistake, just keep playing. Finish the piece as best and strong as possible. Don't dwell on it...just keep going. That's a good lesson in life, as well! Corinthian has done great with that lesson. Even on Saturday, he said he felt he made a slight mistake with one finger on the wrong key, but didn't bring attention to it and played the rest of the piece the best he could. I think that shows we don't need to be perfect in our lives. If we just do the best we can, we may still be rewarded!
I think perfection, like beauty, may lie in the eye of the beholder. What one may think is perfect, may seem imperfect to another...and vice verse. Our four-year-old daughter has a four inch scar running vertically down her abdomen, she has only two-thirds of a kidney, and she lacks a strand of hair on her entire body...but in our eyes, she is beyond perfect! As are our other three children. I'm learning to see beauty and perfection beyond what the human eye can see. I've always been a perfectionist. At times it's a blessing; other times a curse. I've learned what real perfection is. My finger nails were painted this morning by Sicily and they are perfect. There is just about as much polish on my skin as there is on my actual nails, but she did the best of her ability and more importantly...she did it out of love. She wanted mommy's hands to look pretty. And, boy, do they! ; ) She is getting ready to hopefully take a little nap, even though she skipped one the past two days. I will hopefully have a little chance to pack up some stuff and get it all ready for our departure later. Wish me luck! Everyone have a good Monday!
Sicily and I made it home last night a little after seven o'clock. She was one happy little camper to be home with her family and kitty cat! She slept with us and followed the doctors orders to drink lots and pee lots! Even when Patrick and I woke her in the night to use the bathroom, she did it without fussing. After, she crawled back into her little princess cot and said, "Love you daddy, love you mommy!" One of her personal coined phrases is, "Love you all the way." She says that all the time along with, "Love you the mostest." Terms of endearment I hope to be able to hear for years to come.
She is in a happy and energetic mood today. It's still hard to believe sometimes this is a little girl who has been receiving strong doses of poison in her little veins! She's been talking a lot about her hair growing out this summer. She cracks me up some days when she'll say, as she tosses back imaginary locks, "Pretend I have hair!" She even "washes her hair" in the shower! Gotta stay in practice for when the actual hair returns! She is also very excited for this summer as she wants to get her ears pierced. We didn't want to do it while she's been on treatment as it runs a risk of infection. Any chance of an infection, no matter how small, is a risk not worth taking! So, we will hopefully fulfill her wish sometime in June.
Even though Sicily at times possesses a very stoic personality when we are inpatient at the hospital, she has managed to capture the hearts of several staff. There is a resident doctor working in the oncology clinic and on the floor of the hospital that has been a great support to us and even wants to help us raise more awareness with one of the ventures we have planned. Again, like I've said before, it takes really special people to work with and around pediatric oncology! I don't know how they don't take it home with them. In a conversation over this last visit with one of our night nurses, I asked her how many funerals like the one we attended together last week had she been to? She replied, "too many!" In my mind I was wondering how she kept doing it time after time. But then she continued by saying that when we saw each other last week, and I told her that we'd be inpatient on Thursday and I asked her if she was going to be there, she said, "That is why I do it!"
We have built relationships with some of these nurses. They've become our family and friends when our own family and friends can't be by our sides. I heard an advertisement for a new hospital based show last night that said nurses are the heart of a hospital. I couldn't have said that better myself. I could go on and on about our experiences, but I think my point has been made. Volunteers have also made an impact. Sicily was visited by three more therapy dogs on Saturday. I think it is so sweet for people to take time out of their day to bring their pets up to visit the children at the hospital. I can honestly say it makes one little girl smile and happy. She talked continuously the rest of the day about how cute the doggies were! They were her friends! And I am amazed and appreciative of the volunteers that come and spend time in the playroom with these kids.
We met a super sweet lady yesterday. Some people ask simple questions about how Sicily is doing while others I think don't want to intrude or come across as "snoopy." Personally, I'll answer any question and explain her whole diagnosis to anyone who'll sit and listen long enough! I feel education leads to awareness that will hopefully lead to action! The volunteer working the playroom yesterday knows all too well what we are going through as her grandson is surviving a diagnosis of neuroblastoma. I could have sat and talked with her the rest of the day and then some. Her ability to understand my emotions and her level of compassion was something found only in someone who has been there, done that!
Sorry for rambling so...some days my mind won't rest and I have to just sit and type. Patrick and I had one of those "what if" kind of conversations last night. They come about every so often. With Sicily's last treatment only a couple of weeks away, that gnawing feeling of swimming in unprotected waters (life without chemo treatments) is starting to rear its ugly little head. I'm still living with all of this in God's hands, but the human side of my brain can't help but bring about some dread! I guess part of me has resigned to the fact that Sicily's chances of relapse are high, considering her diagnosis. I'm trying to live in the reality of the situation...not trying to be pessimistic! I will be devastated if she relapses, but not shocked or surprised. There is a difference in the two. But as I have said time and time again, I feel more than prepared for what may or may not be before us as God has been with us every step of the way. He hasn't proved Himself to me...He shouldn't have to,...I, instead, have completely opened my mind, heart and soul to His presence and accept whatever it is He wants of me! I know it won't be easy, but we are not alone. We never have been and we never will be!
Again, I apologize for going on and on, but after I journal sometimes, I am able to walk away and exhale...like I just sat down and spilled my guts to a best friend or a counselor...bet you all didn't know you fit into both categories! ; ) Well, enough mental rambling for today. I am good! Sicily is great. And God is AWESOME!!!
Sicily is doing great. We've been out and about quite a bit this morning. Not sure where her numbers are but she feels so good and is so happy I just decided that she should just come along.
First thing this morning she accompanied me as I took Elias in for an ENT appointment. He has continued to have problems with his ears, even after having bi-lateral tubes, twice. Our new pediatrician wanted him seen by an ENT (ear, nose and throat) doctor soon. A hearing test was performed before we met with the doctor, and Elias' left ear shows some hearing loss. He also suffers from allergies so we've scheduled him for tests, as well. This doctor doesn't mess around. He said by Elias' age, and after having tubes twice, there is most likely an underlying problem with his ears and we are going to have a third set of tubes put in called "T" tubes. There is a 10% chance of perforating the eardrum with this type of tubes and they will need to stay in until he's at least twelve (he is currently seven and a half). Let me mention here that our poor kids inherited their moms horrible ears. I had tubes as a child; multiple sets. I, too, had the "T" tube in my left ear and fell into that 10% and ended up having to have tympanoplastic (sp?) surgery to repair the hole in my ear drum. But, we will take the risk in hopes of helping Elias' ears. Corinthian and Isabella both have had tubes placed in their ears, as well...Bella multiple times. Our poor kids!!! Elias is scheduled to have surgery on June 1st. I will take him in later to have custom ear molds made to protect his ears from water and then on the 19th of June he will be tested for allergies. Yep, there is never a dull moment around the Zeka household! Elias has surgery on a Monday and then on Thursday of that same week, Sicily goes inpatient for her last chemo for a three day treatment.
Some days I do feel like my head is spinning, but I firmly believe God doesn't give us more than we can handle...and if I don't think I can handle it all, I'll call in for reinforcements! ; ) Today is good, though. I'm glad and relieved to be doing something for Elias! It's overdue, but it's been hard to squeeze in anything extra lately. Poor kid ruptured his eardrum a couple of weeks before Sicily's first surgery. We should have followed up with a pediatrician shortly after that in November, but considering we were living in OKC for three weeks and hadn't had a chance to find a new Ped...it was a tough time. He's such a sweet kid. He just sat there in the exam room this morning and nodded his head to everything he was being told. Even though he has been through the surgery's before, he was so young the prior two times that he can't remember any of it. He'll do great again, I'm sure!
In between E's appointment and running some paper work to church, Sicily and I baked four dozen cupcakes and got them to the school for Isabella's fifth grade day party tomorrow...which I am lucky enough to be in attendance! It will pretty much take up the whole school day and daddy will get to stay home and take care of little princess. Speaking of little princess, she has an appointment for a CBC Friday morning. Then on Saturday, we will be attending my uncle D's memorial service. On Sunday I will exhale and collapse on the couch! But for only a few minutes as we really need to get this house in order before all the summer travel plans we hope to do! "BREATHE!" I'm doing great and just enjoying the sunshine and the fact that we are so very blessed in so many ways! Again, God is Good!!!
Sicily is doing good despite her ANC at 498. Her platelets are low and her hemoglobin is getting there. Bottom line, no dare devil scooter riding for her this weekend! We will need to keep an eye out for petechiae, which are little red dots on the skin. Blood can leak into the skin from tiny little capillaries and cause the spots. If this happens, we'll need to take Sicily to the hospital for platelets. Hopefully, we won't have to. I continue to give her the GCSF shots until her counts come up. We'll go back to the clinic for a CBC next Tuesday morning.
If we wouldn't have had to take three extra days off from school earlier in the year for snow/ice, today would've been the older kid's last day of school. But, alas, they have to return after Memorial Day next week for three days. I think my brain is already on summer break. I'm tired. With all the end of year activities, I'm ready for this year to come to a close!
I spent yesterday with Isabella to help her celebrate fifth grade day at Indian Springs Elementary. I have to admit it was a little hard for me...not that I will miss her being in elementary school anymore. I was actually a little blue because I felt bad about her only being a student at this school for a year. It is a wonderful school and she seems to have adjusted to it all okay, but there was a feeling yesterday of "not belonging" to me, on her behalf, if that makes sense. She spent five years with the same group of kids at her old school in Wellington. Isabella can sometimes come across as a bit of a loner; not really in a bad way, though. She has never felt the need to be the center of attention or to be surrounded by a group or "click." I understand that many of the students here have been together for a long time, as well. I don't know...it just wasn't a comfortable experience for me. I went for her and she was glad I was there. She reported having had a good time! I guess that's all that matters in the end!
I still feel very vulnerable when it comes to our kids and all they've had to deal with this past year...moving to a new city and home, adjusting to new schools, the older three having to deal with their sibling's cancer, occasionally absent parents because of that...the guilt thing still rears its ugly little head from time to time. I'm ready for this summer. I hope it will be a bonding and potentially healing time for our family. Again, we realize how very blessed we are that Sicily has done so well. We can't imagine our family without this little spark plug and hope to never have to!
Everyone please have a very safe and happy Memorial Day weekend. Please pray and keep in your hearts and minds all those who have so bravely served our country in the armed forces. They carry on their shoulders and backs the freedom of our country. Where would we be without them? Love and thanks to you all!