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WEDNESDAY, FEBRUARY 04, 2009 03:18 PM, CST
So far another uneventful day around the Zeka household! Sicily did wake up at 4:30am and crawled into bed with mommy and daddy, but no one managed to get back to sleep after that. But she was about as precious as she could be as she laid there and rubbed my back...with freezing cold fingers...no wonder I couldn't get back to sleep.
That early rise has taken it's toll as she feel asleep at the kitchen table just a bit ago right in the middle of eating her chocolate chip Ego waffle (yes, it's afternoon and she's eating a waffle...anything to get her to eat!). She had her legs crossed in the chair and her forehead resting on the very edge of the table. I carried her over to the couch, but not before snapping a couple of pictures, of course (just added one on Facebook). And I love the "ensemble" she chose to wear today...a pink and white OU sweatshirt, black and white checked pants (she looks like a walking racing flag) and hot pink shoes one size too big. She's looking like a trend about ready to take a jump off a cliff! Oh, forgot to mention, under those fashionable duds is a two piece swimming suit. Don't ask! She keeps us in stitches around here! Not too many dull moments.
We spent most of the afternoon working on some Valentine things. She enjoyed "having a job" to do. Our kids are kind of weird that way...if you call something a chore or I need help doing something, it's not much fun to help out old mom. But if you re-label it as a "job," things actually get done, most of the time. At least that's how it works with the two younger kids. The older two see right through me and don't find the game as entertaining!
It's a pretty, yet chilly day outside today. We're looking forward to the weekend as the temperatures are supposed to be relatively warm so Sicily can do her favorite thing...play outside. I was able to talk to the Make A Wish Foundation yesterday and they are granting Sicily her wish. She asked for backyard play equipment and they are giving it to her. She is so excited. It will hopefully be presented sometime in April hopefully around her 4th birthday. Make A Wish is incredably awesome! She will feel so special!
Anyway, Corinthian just got home from school so better go open the lines of communication and find out what is going on in the life of a seventh grader. He's such a cool kid!
Gum chewing is being requested for tomorrow at 10:30 for a dose of Vincristine. Praying Sicily's number are in the "okay" range. I'll report when we get home. Thank you all!!!
Sorry I've been absent from posting. Been pretty busy, but also just liv'in!
Sicily's appointment Thursday morning went well, except the computers in the lab were down so we didn't get her numbers until yesterday and she's at 810. Nurse Terri couldn't tell if they were still on their way down or back on the up swing again, so we will continue with her Neupogen shots. The shots have been hurting her lately, and we finally figured out that she was tensing up her tummy when I was giving them. Last night, she sat in my lap and daddy held one hand and big brother Elias held the other so she could squeeze their hands instead of tightening up her stomach and it didn't bother her. Glad we were able to figure that little glitch out.
It's not much fun to give your little girl a shot and make her cry. She did so good the first round that we thought she'd just continue. Now we know what to do for her.
Thursday was also a big day as I had a meeting at the elementary school to go over our daughter Isabella's IEP (Individual Education Plan). She has had one since preschool as she fit into the category of learning disability. She was tested with numerous tests with the school psychologist and it was determined that she no longer qualified for special services. I was so happy and scared at the same time. This year she was only pulled out for assistance in math, and now will be doing the same work as her peers. This has been a long road, but Isabella is a success story in early intervention. All the hard work her teachers in Kansas invested in her has truly paid off. Yes, I'm scared at the new path we will be walking with her, but she's going to do fine. She's going to get ready to enroll for 6th grade in a couple of weeks. We will be watching her school work extra closely as her teachers will be, as well.
In addition to all that was going on Thursday, Elias feel down after school and hurt his left arm. We've been watching it and have been giving him medicine for the discomfort, but it is still bothering him so Patrick is going to take him to a minor emergency clinic this morning to figure out if it needs more attention. He is such a boy. He has a nice scratch on his chin from sledding last week and a "trampoline burn" on his forehead from the neighbors house. It's always something!
Corinthian is doing good and has been a real big help in entertaining and caring for Sicily. She loves being with him. She will ask me from time to time if we can call him in the middle of the day while he's at school. I have to tell her that his teachers would frown on that idea.
Stowie the cat has been eating rubber bands and disposing of them from one end or the other. New house rule: no leaving rubber bands laying around! Last night I found an episode of House on tv and told Sicily it was on. She asked if anyone was in a hospital bed yet or if anyone was bleeding. I told her no, and I'd call her if anything exciting happened. Not much gets to her. Kind of scary how things like that don't bother her, but also works to her benefit. Kooky kid!
Well, I'm trying to get some small projects done around the house. It's usually a two steps forward, one step back type of thing, but I rejoice in even the smallest of accomplishments! "Yeah, last night I finished up the laundry I started last Sunday...just in time to start it all over again tomorrow!" Day by day! Everyone enjoy the weekend!
Second entry for today...update on Elias...he fractured his left wrist. He has a splint on and it is wrapped. I have to call an orthopedic surgeon on Monday to have a cast put on. He is actually excited to get the cast. Patrick said that after the doctor came back in with the x-ray and reported that it is indeed fractured, Elias asked if he would need a cast. When the doctor replied, "yes," Elias pumped his arm (apparently his good arm) and said, "YES!"
That's "Ma Vie Folle"...(french for "my crazy life!"). Have a good one!
SECOND UPDATE FOR TODAY -- THIS ONE ON BROTHER ELIAS
MONDAY, FEBRUARY 09, 2009 03:36 PM, CST
Second post for today.
Boy, oh boy, oh boy...Elias never disappoints us in the personality department!
As I was walking up to his school to pick him up for his doctor's appointment, I met Mr. Smith, the school principal, on his way out. He said he was just in the office talking with my son and told him to ask and see if he could get a Gortex cast, as it would be waterproof. Elias quickly responded with, "I want an old fashion cast so I can stink like a man!" :~0
My jaw dropped, as you can imagine. I continued on into the office were I was told by the two office staff that they have been entertained (note to self...don't call ahead next time to have Elias wait in the office for me unless I send a roll of duck tape!). We all laughed and I asked E where the whole "man smell" idea came from? I said I know you're not referring to your dad, and one of the lady's piped in and said, "we know...we hear he takes lots of showers!" Okay! How much more info did Elias divulge?
So we go to his appointment and find out that his crack (or "quack" as Sicily refers to it) is on the growth plate in his wrist but it hasn't shifted. If it did (or still does) he may require surgery. Uuuugh! The doctor wrote a note for me to take to the school excusing Elias from PE and all other physical activities for at least the better part of a month. No bike riding, no scooters, no trampoline at the neighbors...basically we're going to need to sit on him inside the house as we cannot take the chance of him injurying it further.
Won't this be fun?
When we were finished getting his cast, which have you guessed the color yet (hint, hint?), Elias asked if there was enough time for him to go back to school? I had planned on making a Sonic run for a slushy, but he chose for me to drive him back to school for the one remaining hour. Waiting to show off his new "red" cast was more than he could handle, so back he went. I felt the need to apologize to his teacher for disrupting the class with what was inevitably a cast signing party, but she thankfully seemed okay with the idea. My thought was maybe it would be better to get it out of the way late in the school day rather than start out tomorrow with it and it becoming an all day hassle. That was my hope, at least.
So, wish us luck in trying to tame our wild animal into a calm, game control holding couch potato for the next month! It's going to be a trial! But again, nothing we can't handle!
We're all doing good. Hasn't been too much to report, which is a good thing. We luckily missed out on the severest part of the storms that wrecked havoc on Oklahoma last night. I pray for the families affected. It's a little early to be experiencing this type of weather, but it can actually happen at anytime, so we just stay aware!
I had to run to my dentist's office this morning and took Sicily along since she's doing good. We stopped by a grocery store on our way home, one that I don't usually shop at as it's farther away, but it was on our way home. Sicily doesn't get out and about much these days and it's still interesting to see how people react to her and her appearance. I left that store with a smile on my face because the older lady who checked us out gave me the reaction I'd been praying for. We still get lots of looks and quite a bit of ignores, but this sweet lady looked at Sicily and then at me, and as if the situation needn't be explained...the bald head was enough...she just simple asked, "How is she doing?"
In my mind, that is what I've hoped someone would ask. She wasn't asking for long details or an elaborate diagnosis, she just asked in a concerned way and didn't cast pity on us. When I reported that Sicily is doing well, she then responded with, "Well, she looks really good!" That could've been her bright eyes or her sweet rosy mouth, or the fact that she was from head to toe in hot pink and leopard print, none the less, I felt appreciative of this strangers compassion. It was just the right dose. I've often thought to myself, "What would I say if I encountered someone in my shoes?" I'm afraid and embarrassed to admit that I'd most likely be the "ignoring" kind as I'm too worried about offending or upsetting someone. But I penciled in my mind what would be the perfect "stranger inquiry," and it would be just what the checker at the Wal-Mart Neighborhood Market asked me today..."How is she doing?" Love her!
Anyway, just another simple thought from my simple mind that I wanted to share...just in case you ever encounter a precious little child of obvious circumstances and you're wondering what or if you should say anything. Everyone's circumstances are different. Some may not welcome the conversation, but my philosophy is, "the more who know, the better!" That is the only way we can hope to find a cure for this terrible disease that has attacked our children. By-the-way, the pity stares don't bother me. I still catch myself handing them out to others as well, from time to time. It just means that you have a heart, and the site before you is a painful one.
Sicily has a dose of Vincristine tomorrow at 10:30. Aunt Betty Kay is visiting us so she gets to come and see how brave Sicily is. Then, if her numbers are okay, we'll attend her preschool class Valentine's party at church. We may not stay long, but just getting to go will be a highlight for her. We've got her Hello Kitty Valentines ready! ; ) Everyone have a great evening.
We just returned home from the oncology clinic and Sicily's numbers are at 1900, good enough to attend a Valentine's party, YEAH! She's excited, although she'll probably clam up and be very quiet once we get there. She'll still enjoy just getting to be out and being around other kids for a bit!
The sun is shinning so she and Aunt Bett will most likely go for a walk once we get home, as well. She's a walking machine. We're so glad she has energy and feels good!
We will check in at 8:00am a week from today for her six day hospital stay. The event in Wellington that had to be canceled last December has been rescheduled for Feb. 23rd. Sicily will still be inpatient, but I am planning on attending and possibly bringing the other three children along. Patrick will stay with Sicily. I think it's very important that we be there! We'll make it work.
Gotta run so we can eat a quick lunch and head to the party. Everyone have a wonderful day!
I guess you can tell that if you haven't received a journal update from me in awhile, then things are going well. They are indeed. Sicily is still full of spunk and energy. She's happy and healthy, for the most part. She enjoyed very much getting to go to her preschool for the Valentine's party. Everyone was so sweet and we feel so blessed to be a part of such a wonderful church family! It was so cute, none of the kids stared at Sicily or made any comments about her lack of hair, but one sweet little guy asked, "Why doesn't she talk?" I explained that she can be shy from time to time, but will talk non-stop at home. I think he was satisfied with that answer, but would have probably liked to have had a small conversation with Sicily. I hope someday she grows out of her shyness.
The older three kids were able to go and visit family and friends in Wellington over the weekend. All reported having a great time. Patrick and I stayed home with Sicily and can't say we were able to get anything productive done around the house. She goes from sun up to sun down with little slowing. Her level of physical activity still amazes us. We know everyday she feels good is still an absolute blessing! We had a quite Valentine's day...burned a fire all day (thanks to all the wood from Uncle Bob and Aunt Clydene) and just enjoyed being home together as Patrick just got home from being in California part of the week.
Sicily and I had a nice visit from my Uncle Richard and Aunt Cynthia yesterday afternoon as they were traveling from Missouri back to Texas. I'm glad they were able to stop by and see how Sicily is really doing. Seeing is believing!
Tomorrow is a big day as Sicily will have a CT scan in OKC. Basically, they will just be checking to see that nothing NEW has shown up and that her chemo is doing it's job. For some reason, I'm not feeling any "scanxiety"...the anxiety that is usually felt by parents before a scan. It's not like there is anything I can do about any of this, and we are doing what we can, so it's all in God's hands. Yes, I am praying for NED (No Evident Disease)...eveyone wants to have NED in their lives! He's a popular guy! ; ) If that is not to be the case, we will do whatever else needs to be done! I refuse to let this situation rob us of the joys and purposes we have in our lives.
I was sent an article via email from some dear old friends that really spoke to me (thank you Johnie and Patti)! It was an interview with Rick Warren, author of "Purpose Driven Life." So much of it hit a chord and made so much sense that I'd like to share a few of his thoughts (I've taken the liberty to paraphrase as to not type the whole article).
He said, "We were made by God and for God, and until you figure that out, life isn't going to make sense. Life is a series of problems: Either you are in one now, you're just coming out of one, or you're getting ready to go into another one. The reason for this is that God is more interested in your character than your comfort; God is more interested in making your life holy than He is in making your life happy....And no matter how bad things are in you life, there is always something good you can thank God for...You can focus on your purposes, or you can focus on your problems!"
"Happy moments, PRAISE GOD.
Difficult moments, SEEK GOD.
Quiet moments, WORSHIP GOD.
Painful moments, TRUST GOD.
Every moment, THANK GOD."
I couldn't have said it better myself. I guess that is why I am so calm right now and not needlessly fretting about tomorrow. It's my nature to be a worrywort, but God has removed that from my life for the time being. It feels good, I have to say. I pray that it continues on through tomorrow. It makes day to day life a lot easier and more enjoyable to live!
I'll report when we hear how her scans look. We also have an appointment with the radiologist, just as a follow-up to her radiation treatments! God bless you all and thank you for all the prayers and support!
Happy to report that Sicily's abdominal scans looked good. Her chest and lungs were not scanned so she will need to be x-rayed while in the hospital. I'm not ready to proclaim a NED until that is done! Her numbers are at 959...hopefully they will hold so she can start her next round of chemo on Thursday. If they go below 750, it's a no go. I think she'll be okay.
It was a pretty hectic day as Patrick ended up having to take Sicily by himself. We forgot that she needed to be there early so I stayed home to see the other kids off to school and to be here for them in case of an emergency.
There was a problem getting the dye needed for the CT to go through Sicily's port so it became a bit of a stressful situation until the nurse from the clinic came to the rescue. The only thing Dr. Meyer seemed concerned with right now is Sicily's weight. She weighs the exact amount as she did at her diagnosis. But I have to say in her defense, this little girl works off every calorie and gram of fat she intakes with her level of super charged energy. She very seldom sits and relaxes. If she's awake, she's moving. If I were smart, I'd follow the Sicily Zeka Exercise Program!
Sicily was able to paint some artwork today that will be in the silent auction to benefit the Oklahoma Children's Cancer Association. The auction itself takes place next Friday evening (the 27th) in OKC, but I don't know if we'll be able to be in attendance as it all depends on Sicily's numbers. We'll just have to wait and see.
It's a busy week around here with no signs of slowing. Patrick will attend a breakfast at Corinthian's school in the morning to honor all those students that made the Principal's Honor Roll during the first semester with straight A's. He's doing awesome. He's in advanced placement 7th grade math, which is pre-algebra, and I kid him now and ask him how does it feel to be smarter than your mom in the math department ( I stink at math!!!)? Lucky for him he received his dad's genes in that area!
Corinthian also has his second school sponsored dance Friday night, so he and his buddies will go. I expected before the first one that he might be the type of kid who would end up holding up some wall in the corner of the gym waiting for his sentence to be up, but I was very surprised how excited he and his friend were about the event. Not that Corinthian's isn't a social kid, but there's a much larger school population here compared to his last school, and I didn't know how hard he would try to interact. One less stress knowing he is happy!
Sicily and I have an appointment Thursday morning at 8:00am to get her CBC and hopefully her admitting papers for a penthouse view on the 3rd floor of the Children's Hospital (I love the hospital here...there are views from every room!). This will be one of the long stays, but this is week nine of twenty-five, so we feel like we are making headway!
Dr. Meyer wants her to have one more CT before the end of her treatment protocol, so that has been scheduled for April 21st. That seems so far away but will be here before we know it.
I can't believe Sicily will turn four in April...this birthday will be extra special this year! That's about all the news for now. I will admit that the feeling of anxiety did creep up on me a bit today, mainly because I had to stay home and wasn't able to be by her side. But daddy does so good, even better than mommy sometimes, so it was all well! Thank you, thank you, thank you for the mounds of prayers that were being said today! We'll just keep living life and thanking God for every minute of it!
Sicily just got up to her room (#320) and she is getting ready to get her IV fluids started. They will run for about four hours and then hopefully she'll get her first round of chemo. She is doing good, but this is the first time she asked about going home. Once she gets in the swing of things she's fine.
This is our third inpatient treatment; I think we have six more. I'm afraid each one is going to seem longer and longer. But there will be light at the end of the tunnel! I'll update more later if there is any news.
Sicily will have a chest x-ray at some point, so we'll be praying for that to be crystal clear!
Sicily has already taken me on several walks so far...over six times or more around the third floor. Before lunch, one of the volunteers caught us on a walk and asked if we wanted to meet someone special. I already knew who she was speaking of as I saw "someone famous" downstairs in the hospital as I was bringing up our luggage.
There was a camera crew and somewhat of an entourage when we turned a corner in the hallway, and out of a hospital room came.... Bob the Builder. A very BIG Bob the Builder. Sicily started to take a few steps back to me as he was rather intimidating in size. But she surprised me and gave him a hi five and shook his hand, all the while cameras from a local Tulsa tv station were rolling.
I was asked permission for her to be filmed and signed a release form. Little Miss Sicily may make her debut on the evening news tonight. Rather a bit of excitement. Of course, she did not talk at all until we continued on our walk, and out of earshot she said, "He was big!" But she also seemed happy about meeting a famous person! ; ) I'm hoping Patrick can tape the news story if it does indeed air tonight.
This month the hospital is celebrating it's 1st birthday. It is an awesome Children's Hospital. If we can't be at home, this place is not a bad place to be, since we have to do what we are doing!
Well, some little person seems to be getting tired, but refuses to admit it. She keeps wanting to go on more walks, but we ran the battery down on her pump the last time and it needs more time to charge. She just asked to lay in her bed so maybe she will take a little nap. No chemo yet as she has only used the bathroom once and I don't think she's "diluted" enough.
We're doing okay. This is the first time Sicily has cried about wanting to go home, and it was on the phone to daddy so that was a bit hard.
They were able to start her chemo around 2:40 yesterday afternoon, which is the earliest we've been able to. We watched the news last night for Bob the Builder's appearance and it was on, except instead of seeing Sicily with him, I got a split second's worth of air time. She was standing right beside me but Bob's big stature was in front of her. Oh well, it was still fun. She wanted to watch an episode this morning of his show, but we couldn't find one on tv.
She slept pretty good through the night but ended up wetting the bed and having to get things changed. She must have been in a pretty deep sleep. When she woke up, she still got up and used the bathroom with over 600 mls. She is eating really good this time so far. She's let me order her a peanut butter and jelly sandwich for lunch and I brought a bag of cheddar flavored mini rice cakes and she has eaten almost the whole bag between yesterday and today. We spent some of the morning in the playroom working on arts and crafts. She always likes that! And of course, we've been on a walk.
My heart is heavy this morning as one of our little Wilm's warriors earned her angel's wings early this morning. Little Chelsea Hicks was only five years old and it just breaks my heart. So not fair! Please keep her family in your prayers, along as all the other beautiful children fighting this beast! Another Wilm's buddy, Hollyn, is soon to be having a bone marrow transplant. Scary stuff. Please add her family to our prayers, as well.
Even though we have to become accustom to a "new normal" in our lives, it is still so very hard. I was having a hard time packing on Tuesday. Sicily kept asking me what I was doing and I said I was packing for the hospital. I said we have to go stay for awhile again. She asked if we were going to spend the night, and I said we would be needing to spend five. She argued with me and kept saying, "No we're not!" She never gets too upset and when the time comes around to actually go, she's very compliant and does everything we need for her to do. It's still hard.
I should be taking her to preschool and not to the hospital, but as Patrick reminds me..."This is still our life!" So, we'll keep moving forward and be thankful that Sicily handles her treatments so well and is still a happy little girl, for the most part! Thank you all for continuing to lift us up in prayer. This journey is long and tiresome, but we couldn't make it through without all the support we receive! The nurses just came in to get her next round of chemo going. Everyone have a good day!
UPDATE POST #2 FOR TODAY
FRIDAY, FEBRUARY 20, 2009 06:28 PM, CST
Evening all...second posting for today. We're doing good, lots of wonderful caring people out there.
Sicily and I got a HUGE surprise this afternoon. I was sitting at the little desk in the hospital room with my back to the door. Sicily was sitting in a chair and I heard her kind of gasp and say, "Mom!" I turned around as I had sensed someone had entered the room, and standing there with two balloons in her hand was my mom, Sicily's grandma Parker.
I think I stood there in shock for a minute not really believing my eyes, but it was really her. My mom lives two hours away and came to Tulsa just for the day with her friend who needed to do a little shopping. She didn't tell me she was coming so she could surprise Sicily and I in the hospital, and boy did she. I needed her hug today. It was very healing!
On top of that, Aunt Bett sent Sicily some balloons and she also received a delivery of a teddy bear and little purse from someone who decided to be anonymous. I have an idea that it came from someone in the hospital...a very sweet person in the oncology office!
I also received a call from a friend of the family whose daughter is also battling cancer, and they are going to try to drive from OKC tomorrow to visit us. It's amazing how there can be a bond with someone before you have even met them in person! But we can't wait to see and hug our friend Peyton! My dear old roommate, who's voice has always had such a calming affect on me also called this afternoon.
Makes a person feel pretty good knowing how many wonderful, caring people are out there for us, and we appreciate each and every one of you! Both of our spirits were lifted incredibly today. I get down very easily when I hear news of another child loosing their courageous battle, as precious Chelsea Hicks just did. She was a brave little warrior. It's not too hard for someone like me to put myself in their shoes and the emotions start to become overwhelming.
Sicily is doing really good right now and for that I am soooo thankful. We haven't heard anything about the x-ray results and doubt we will over the weekend.
Patrick is on his way up here with the two middle kids this evening. Sicily is anxious to see her daddy! She fell asleep about half an hour ago so she will be re-charged for daddy's turn to be her companion. It's been pretty quiet on the third floor today...not many other patients it seems.
I've gotta get my stuff together. Thanks for just being there...just knowing there is someone reading this out there in cyberspace is comforting!
Sicily is doing good...cruising right along with her treatments. Patrick and I know it's not too common for a child to do as well as she has with this and we are thankful every day! The oncologist on call at the hospital this weekend told Patrick this morning that Sicily has been pretty lucky to do this good. She hasn't had any fevers or other sicknesses that would or could detour and prolong her therapy. Either could also require more inpatient hospital stays. A tough thing to endure!
We are very aware that the further into this protocol she goes, the more chances for fevers or other complications are to occur as the toxicity level increases. But we are still amazed we've made it this far! We still hadn't heard anything about the chest x-ray yet, so Patrick asked the nurse today and she was able to look it up and found out that it appears clear. YEAH! That is truly wonderful news right now!
Today was a very special day. We got to meet our cancer buddy, Peyton, and her mom and grandma. I think this was about the sweetest thing I could ever imagine. Peyton is a friend of Sicily's cousin, Jaden, and she really wanted to visit Sicily in the hospital, so they drove the almost two hours to Tulsa from OKC to do so. I felt like I already knew her mom, partly because she is a friend of my sister's, but mainly because she is someone who has walked in my shoes and felt my emotions, frustrations, sorrows and heartaches. She is a mom of a child with cancer and I can look in her eyes and see understanding and empathy. She can truly say, "I know how you feel!" That's a very strong connection for me! And Sicily bonded very quickly with Peyton.
When they were leaving, she asked if she could hold Peyton's hand as we walked them down the hall. I think they will be good buddies for a very long time! Like I said, it was the sweetest thing and a good dose of compassion medicine! Thank you guys so much!
Other good news is that Sicily and Patrick may get to leave the hospital by Monday evening if everything still goes as well as it has been! One less night in the hospital is, well, one less night in the hospital! ; ) We got to start her chemo earlier than usual on Thursday and then it continues to get bumped up two hours every day there after. It would be nice if it worked that way every time with the early start, but we never know how things are going to go. It's been a good life lesson in patience and flexibility.
Again, thank you all for the prayers...I wish you could all see for yourselves how they are working. Someday! For now, I will do my best to keep updating and reporting the results and answers to those prayers! Thanks be to God!
Sorry I'm a little slow posting these days. There's been a lot going on and sometimes I don't feel like I have enough time to sit down long enough to collect my thoughts very well. And then when I do, I practically journal a book! Sorry!
The three older kids and I made a quick trip up to Wellington, Kansas Monday afternoon for a benefit program that the high school National Honor Society put together for Sicily called "Wellington's Got Talent!" I was almost shaking as I drove into the town were we spent five wonderful years. I knew it was going to be an emotional evening for me, and it really was. We had countless family and friends there to show their support. I was able to see my wonderful sorority sisters and I still feel like crying as I miss them so much and they are still so very important to me. I miss their smiles, hugs and eyes of understanding. It is times like this that I wish we still lived in Wellington. They can't be replaced.
And our family, again, I cry because I miss them, but they all have done such an awesome job at coming to visit us and being there for us in our deepest times of need. They are awesome, as well! I am so proud to be associated with the community of Wellington and feel so blessed that they still consider us one of their own.
Our dear friend and old reliable babysitter, Katie, is one of the Honor Society officers that helped organize the show and she and the other officers took the kids and I out to dinner before hand. I so enjoyed that. What an awesome group of young people!
And then there was our nephew Ben...what can I say? He performed a song in honor of Sicily that I was not familiar with but now I can't get it out of my head. It's a sort of haunting melody titled Mad World and after I did a little research on it, discovered that it was originally performed by a group that I loved in the 80's called Tears for Fears, but the version Ben sang was a remake by Gary Jules and I loved it. I thought he did awesome! I downloaded it off of itunes. It's a sad sort of song, but somehow it captures some of the emotions I've been feeling lately. Thank you, Ben, for having such a big heart!
And I can't thank the National Honor Society students enough for all their efforts. I truly enjoyed the evening, as did the kids! You guys are truly special!
As we were driving back to gandma's house to spend the night, I called Patrick at home to tell him how the evening went. He said that when he brought Sicily home from the hospital, she fell asleep in the car. He tried very gingerly to carry her inside, but she woke up as they entered the house and called out, "Surprise, we're home"...to an empty house. That completely broke my heart! Luckily, she was content that Stowie was there to greet her, but it made mommy feel like driving immediately home, even though we wouldn't arrive until after midnight. I knew that wasn't a smart idea, so we did spend the night.
We left town bright and early Tuesday morning as Corinthian didn't want to miss much school. We were able to get him there before the end of second hour...and I didn't speed...too much!
Things are still going pretty good for Sicily, and life for the rest of us, as well. But then those thoughts that I try so hard to avoid thinking slip into my mind like water seeping into the dry soil. Is Sicily doing so well for a reason? Is God allowing us to build good memories with her on a day to day basis because He actually has plans for her that don't include an earthly existence? Or is Sicily truly a miracle in working progress? HOPE forces me to try to side with the latter, but the reality of cancer, and more precisely, Sicily's exact diagnosis, allows me to sometimes think and cry over the former!
Cancer stinks, plain and simple! I'd give up every earthly possession and all the materialistic belongings that God has so generously blessed us with for our daughter to be completely healed and live a long healthy life. But God doesn't let us make those decisions or give us the bargaining power to make such deals. It's a wait and see game in a world of "I want to know now!" My dear friend, Caterina, sent me an email recently that said something to the effect that we prefer to "microwave" our lives while God prefers to "marinate" them! So true! I'm marinating, believe me, and sometimes it's in a bowl of salty tears. My emotions tend to fluctuate as much as the Oklahoma weather lately. I don't feel like I have much control over them. So I'm learning to go with the flow. I cry when I feel like crying and I laugh when I feel like laughing, and some days I've mastered the talent of doing both at the same time! I feel like my face is starting to show the affects of the last six months. I'm turning forty in June yet feel like I've surpassed the age and quite frankly, don't care! It's just a number.
Well, Sicily woke up very early this morning and has proceeded to fall asleep on the living room floor. This is about the only time I can actually accomplish anything worth accomplishing, so I'd better get to work! Thank you all for continuing to be there with us and for us on this roller coaster. Couldn't do it without you!
One more thing, our Wilm's cancer buddy, Hollyn Peterson, is embarking on a very difficult journey and I would like to ask for some very strong prayers to be said for her and her family. They are my role models right now and I wish I was able to help them with what they are about to go through. The best thing I know is to ask God to stay constantly by their sides, as I know He will! She has a CaringBridge website, as well, if you are interested in learning more about her. She and her family are awesome! Thanks, everyone!
We're doing okay around here. Sicily fell asleep sitting at the kitchen table for lunch...again! Guess the sight and smell of food makes her tired! Kind of hard to eat with your head practically laying on your plate. I moved her to the couch were she woke up, of course. I need for her to take at least a little nap.
I'll be honest, it's sometimes very hard being confined to our house, even for a home body like myself. There are days I feel smothered. Not necessarily by Sicily, but by the fact of knowing we can't go anywhere, for her safety. And yes, sometimes I do feel smothered by Sicily. Any parent would when spending hour after hour and day after day trying to entertain an energetic three-year-old. She is not one to play off by herself or sit for any period of time and watch a movie or tv. I love her with all my heart, yet she does tend to wear me out!!!
She has an appointment at 9:30 tomorrow morning for a CBC and a dose of Vincristine. We're doing the Neupogen shots, as usual, but I don't foresee her numbers being very high since she will have only had three shots by tomorrow. We've learned how to minimize the pain of the shot by having her blow out like she's blowing a bubble while I push the needle in...that helps her to not tense up her tummy and the shot doesn't seem to hurt very much when we do that. Last night she wanted the whole family around to watch. The boys don't mind, but Isabella didn't want to, so she sat by us with her head turned. Guess this has turned into a family event. Whatever it takes! After the fact, she jumps up and excitedly exclaims, "I didn't tense up!" She gets a round of applause from the family! Definitely worth a celebration.
I don't know many kids, yet alone three-year-olds, who don't freak and panic at the idea or sight of a shot. She just accepts that it has to be done. What a blessing...for all of us! She still seems to feel good and was able to play outside yesterday for a bit with the beautiful weather we were having. I'm ready for spring and all the beautiful colors that accompany it. I need a little "rejuvenation!" Easter and spring usually do the trick.
The other kids are doing good, as well. I take Elias back on Monday to check on his wrist and possibly have the cast removed. I haven't gotten close enough to it to see if it "smells like a man"...and have no intention of doing so, either. I'm ready for the weekend and some good ole' family time. Everyone have a good day!
Prayers for Kerry and for Sicily, I can understand what she is saying and praying for encouragement and peace from our heavenly father. Her courage and honesty are incredible! I know where Sicily gets it from!
Latest Update from Sicily's mom -
FRIDAY, FEBRUARY 27, 2009 12:54 PM, CST
Sicily had her appointment this morning and her numbers are at 1000...good but we still need to continue her shots. Next appointment for a CBC will be on Tuesday. Hopefully by then we can stop them. We had to wait a long time to get her results as the lab was very slow for some reason, and the playroom was very loud. Next time I think we'll go for a walk instead of sitting and waiting. Sicily woke up very early again this morning so I'm praying she will "voluntarily" take a nap today.
Please keep praying for our friend Tanner Creed...they are dealing with a little (hopefully little) scare right now. I hope they can get it figured out soon! I'm so very glad it's Friday! Everyone have a great weekend!
We are all doing well. We were able to make a quick trip up to Wellington, KS this past weekend to celebrate Patrick's mom's 85th birthday with a party on Sunday. It was a bit of a whirlwind and we weren't able to see many people as Sicily's numbers still hadn't recovered to the normal range, so we maintained a protective bubble over her. But she absolutely loved getting to stay at Grandma Zeka's house and playing with Aunt Betty Kay. She was happy and energetic. We waffled back and forth on whether to take her to the party Sunday afternoon as we forgot to take a mask with us, but decided to go forth with our plans as long as she agreed to let Patrick, Bett or I hold her the entire time. She was okay with that.
It is a balancing act trying to make decisions to protect her health and also trying to let her live a fullfilling life. So far I think we've done pretty good. She still asks to go with me sometimes as I head out to the grocery store when Patrick is home, but we still prefer to be safe and not expose her to anything unneccessary. I think that was one of the hardest things at first, and still, for me to get used to...not being able to just run a quick errand during the day.
I did take her with me today to pick Elias up from school and take him to the ortho doctor. It was a very quick trip. He was excited to see if he would be able to get his cast off. They did an x-ray and when the nurse came back into the exam room with his x-ray in hand, she had a bit of a baffled look on her face. She looked at Elias and asked if there was something stuck in his cast? He replied, "Oh, yah...there's an eraser in there!" HUH? I looked at him and then at the nurse and said, "An eraser?" Elias went on to explain that last week as he was listening to his teacher talk, he stuck his pencil down his cast, without even realizing he was doing it. When he pulled it out, the big chunky eraser that fit over the tip of the pencil managed to stay behind. He said, "I've been trying to get it out ever since!" I asked if his arm itched and that was the reason for the pencil invasion, but he said it didn't. He kept repeating, "I didn't know I was doing it!"
Okay...next time give your 'ole mom the heads up so I can at least pretend I'm aware of things! When the doctor came in he reported that the fracture looks to have healed very well and that the cast could be removed but Elias would need to wear a splint for a couple of more weeks. At least that thing can be removed for showers! The doctor continued by asking Elias if he wanted to keep his cast, and of course I couldn't contain my eyes from rolling...like that was even a question. He said he'd tell the nurse to try to get it off in as few pieces as possible, but Elias was already one step ahead! He said, "I can remove it myself" and proceeded to do just that. With a few wiggles and calculated maneuvers, and a half joking remark from the doctor to "not break his arm" in the process, Elias triumphantly removed his red cast completely intact...and without re-injury...yellow eraser and all! I looked at the doctor...he looked at me...we both sort of shrugged our shoulders. Would you expect anything less out of Elias? The doctor took the cast and stood it up on the counter and remarked, "Look, it can even stand by itself"...and NO, I personally haven't taken a whiff of it and don't plan to. I laughed and added, "Sure, we can make a lamp out of it!" I wouldn't put it past Elias for taking that idea to heart and pursuing it, but it's not going to happen! I will let him keep it as his proud little trophy. After all, as he puts it, "Everyone wishes they had a cast!" They don't realize it comes at a cost...you have to do a little suffering and be in a little pain to get one. Not that keeping that cast around will act as a reminder to him to be more careful in the future! He's Elias. I have a feeling this won't be the last "trophy" in his lifetime! I pray...but I also observe...HE'S ELIAS!
Sicily enjoyed all the hullabaloo. Just getting to go along for the ride was excitement enough for her. She has an appointment at 9:30 tomorrow morning for a CBC. Hoping her numbers will be high enough to halt this round of shots. We had to give her one while in Wellington on Saturday night, and she wanted everyone around to sit down on the floor to watch, including Grandma, who was sitting in a chair. But that was not good enough, so Grandma got down on the floor as well.
Thank you all for the continued prayers...still feeling them every day. Our friend Hollyn is having her bone marrow transplant right now as I am typing. Please continue to pray for her and all the dear children battling for their lives! Every four hours, a child dies from cancer. Pediatric cancer is still considered to be rare, but that above statistic sure doesn't make it sound too rare to me! We just lost three Wilm's warriors in ten days time...that's not rare...that's tragic! Sorry to end on such a down note. More awareness is key to more funding into treatments that could one day prove to be a cure. I pray that day happens in my lifetime! Bless you all!
Well, I knew this day would come, but thought I'd have some tell tale sign of it. Sicily's numbers are basically non-existent right now. We went in for a CBC this morning. She is also on the edge of needing a transfusion. Nurse Terri said they would go ahead and send us home, but watch her closely. If she complains of hurting, being cold (which she does all the time anyway) or overly sleepy, then I'm to call her. And she can't be around anyone who is or could potentially be sick. I'm going to try to keep the older kids at bay as much as possible.
Terri said to be prepared for a transfusion by Friday if her numbers don't improve by then. We will continue her shots with hopes they will help her. We knew there might be a chance sometime that they wouldn't help, and this time around they really haven't. She still seems like herself and doesn't seem to feel bad. Although I should have known last night that something was up because she voluntarily went to bed and didn't get back up again. Neither one of those things happens...ever!
She heard Nurse Terri say to take it easy, and she is actually listening. She came home and let me tuck her in on the couch to watch a movie and she's fallen asleep. She really likes Terri so I think she intends on doing what she says! Again, I would have never expected her to get such a report as she really seems to be doing good.
She ate her choc chip waffle for breakfast and has drank over two thirds of a bottle of Sobe Lifewater. She said she was really thirsty when we were leaving the clinic so on our way to the elevator we dropped into the snack bar and got her a drink and a snack. I told her we needed to take it easy this afternoon and she replied, "I know." So, we'll do just that.
I want to just pick her up and hold her as she sleeps, but I don't want to disturb her, so I will just watch her and pray that she is having sweet dreams! Everyone have a good day!
We're doing good...Sicily especially. She doesn't seem overly tired, cold or in pain, so we'll just keep on keep'in on!
I had to take Isabella and Elias to the dentist this morning for check-ups and daddy came home to stay with Sicily since she can't go anywhere. Very good reports on both kids. All that harp'in about brushing their teeth pays off on check-up day. For their reward, they got to pick what's for dinner... McDonalds. Patrick and I aren't up for that so we'll just fend for ourselves. I was surprised when both kids said they wanted salads. Who are you guys?
Elias shocked me this morning when he got up on his own and even got dressed with out me threatening to put frozen marbles down his pj's. He came up behind me and scared me when I was on the computer. Again...who are you and what did you do with my son? He does keep things lightened up around here. On days I feel more like crying, he manages to say and do things that make me laugh and smile.
Last night, at the dinner table, we some how got on the subject of "love interests" with Corinthian and Elias chimed in that yesterday he asked a girl to be his girlfriend, but she replied, "Ooo, Gross!" He laughed and thought it was so funny! He continued by saying he was going to ask her again today at recess on the playground, but this time he was going to get down on his knee. Gotta love that kid! He is persistent. If mom says "no" to something, ask dad. If dad says no, do it anyway! That's the mind set of this little seven year old guy. He'll get the girl yet! Wonder what profession his mastered skills would be suited for?
Well, Sicily and I have some laundry to fold so we'd better get to work. We have another appointment on Friday morning at 9:30 to check numbers again and maybe get Vincristine and maybe have a transfusion. Whatever we need to do will be okay! Have a good day.
Sicily is doing good. She woke up very early and said she didn't feel good so she climbed in bed with mommy and daddy. She didn't end up going back to sleep, but instead got up when daddy did. After the kids were gone to school, she said she was tired and wanted me to tuck her into her bed. Stowie laid on her bed with her as she napped.
She woke up chipper and full of her usual energy, so I'm just keeping a watchful eye on her and letting her go about her business. Right now she is playing basketball in the living room with a little pink princess ball and an empty box as a goal. She is wearing her hot pink bathing suit under her clothes and just shed her top as she says she is hot from playing ball!
Patrick is going with us to her appointment in the morning since Sicily may need a transfusion and that takes several hours.
We have an unwanted little guest in our garage right now. When Patrick was taking some trash out last night, a little mouse ran by. Uuuugh! Stowie wouldn't be much use if it got into the house as she has no claws to aid in the capture. I'm going to go buy a sack full of mouse traps this evening while the older kids are at piano lessons. I can't handle the thought of one of those little critters running around inside our house!
Well, it's almost another weekend...Yippee! Sicily will be inpatient again starting next Thursday, the 12th. These inpatient treatments seem to be coming faster and faster. I feel like I blink and it's time for another one. At least this should be the shorter visit...a little easier to get through!
Pray her numbers are on the rise so we can stay on schedule for her treatment. You all are the best!
Good news to report...Sicily did not need a transfusion as her numbers jumped to 5800 and her platelets and hemoglobin should follow suit in the rise. She is taking a nap right now as she woke up again very early and both barrels of her nose are running so I gave her Benadryl. Stowie is once again asleep with her on her bed.
She will be able to go outside and play in the beautiful weather this afternoon. Thank you for all the prayers as we see them in action!
Please continue to pray for Hollyn Peterson. My heart aches so much for her right now and her parents having to watch her suffer with all the severe side affects to her particular treatment. She is a very strong young lady but our prayers are really needed for her!
Thank you all for all the love and support. You will never know how much it means to us!
Sicily is doing good. She ran a slight temp Friday evening but it went away on it's own as fast as it came on.
She has enjoyed playing outside the past couple of days. Yesterday was warm but cloudy and windy...perfect day for flying a kite. She flew a little Strawberry Shortcake kite her cousin Julie gave her for her birthday one year. Flew nice and high. Today she's been out drawing pictures on the driveway with sidewalk chalk. It's a little cooler than yesterday, but still nice and sunny!
We went to church as a family this morning. First time in a long time that we were all together instead of splitting up and taking turns staying home with Sicily. We figured since her numbers were so good on Friday, we'd go. We sat in the very back just to be safe. It's funny how we used to take for granted a simple thing like getting to be together at church as a family. Now when we get to go it's a big deal. Felt good!
Update on unwelcomed guest in garage...it has been apprehended! Thanks to about eight traps enticed with cheese and peanut butter. Patrick moved out a wooden chest in the garage where we suspected the little critter was living and found a spilled bag of sunflower seeds. Little stinker was living high on the hog for some time. I'm just glad it was content with the seeds and didn't try to come in the house. I'm not the kind to stand on a table and scream at the sight of a mouse, I'm just disgusted with their poor bathroom etiquette and "germy" presence! I think the traps in the garage will stay put for awhile just in case. The poor neighbors dog across the street just had it's nose snapped at for sampling the peanut butter. Ooops...better watch out for the animals we do like!
My mounds of laundry are needing my attention so I'd better get back to work! Everyone enjoy your day!
It definitely feels like it's a Monday...and the Monday following day light savings, at that. Can't get myself motivated or energetic about anything. Corinthian called from school a little after 9:30 and asked me to come and get him as he was running a fever. He said he didn't feel horrible, but definitely felt something coming on. He hates to miss school, but he had no choice. Dang it...we were doing so good.
I've taken his temp a couple of times since he's been home and once it was 99.3 and just a bit ago it was 98.6...perfect. And that was without any medication. He has been resting in his room so that may account for the decline. I just hope he's not coming down with something. It's hard to keep Sicily from hanging around her big brother. She loves being around him.
She is doing good. She fell asleep in a chair in the living room earlier this afternoon. As long as it's her idea!
I've been feeling the blues a lot more lately. Can't explain the reason, just happens. Goes with the territory, I guess. One day I'm feeling good and positive, the next I'm down and depressed. The fluctuations change quicker than the Oklahoma wind!
Another hospital stay is right around the corner, so I think my heart gets heavy when I think about that. As great as all the people at the hospital who work with us may be, I'm tired of going! This will be hospital stay number four (treatments only) and if Sicily can do as well as she has done thus far, we'll be half way done and will have four more stays to go. We're hoping for an end of treatment in June sometime.
I can't say that we'll celebrate too much. It really doesn't mean much, not like she's cured. There's a lot of publications that say after five years one can be considered cured. But that isn't always so. There's a girl who's mom is involved in the online support group I'm in for Wilm's kids who happened to relapse after 13 years. Who would've ever imagined? Another parent commented that we may never be able to "exhale!" We will never let our guard down ever again with these children who have had to engage in the cancer battle. I guess it's thoughts like those that really eat away at my strength.
I want a cure; I want more attention and funding given to pediatric cancer research; I want the words, "Your child has cancer" to not be the words related to dispair, anguish and grief; I want this to end! The days when I learn of another child prematurely earning their angel wings are almost too much to bare!
Sorry for unloading! Sometimes it just needs to be done...and I usually feel better afterwards. So thanks for the ears! ; ) And the prayers, as I know they help us get through the low times!
Sicily is doing good. She doesn't understand why she can't go outside and play now. The weather was so nice over the weekend. Old man winter can't let go of his grip on us yet and blew in a cold front yesterday evening. We're sitting at thirty degrees after enjoying temps in the seventies. Our trees are sprouting green and spring is just around the corner, yet we're bundled up in blankets and robes. Soon, I suppose...another lesson in patience.
I'm starting to push my blues away. When they hit, they hit hard. But the heaviness in my heart is starting to lighten a bit and so is my outlook. Tomorrow starts another inpatient treatment and hopefully Sicily will sail through it as she has done in the past. I'm planning on having her drink a lot of fluid before we even head to the clinic for our 8:00 am appointment so when she is admitted she may well be on her way to being hydrated enough to start chemo.
Last time we started around 2:00, I think, and that helped as she was able to leave the hospital on the evening of the fifth day instead of the morning of the sixth. Of course, so much goes into how smoothly things play out. If she happens to need a transfusion, our stay might run a different course. Her lips this morning don't have much color to them, so that concerns me a bit. She's also curled up in a chair in the living room completely covered from head to toe in a blanket apparently trying to fall back to sleep. But she didn't go to sleep very early last night and was up around 6:45 this morning. Just from recent experience, I know her numbers can fluctuate rather quickly, so she could be getting low again. I'm just praying her numbers will be high enough for her to start the chemo treatments for the next few days.
Patrick has a busines trip next week and family will be coming to visit us while he's away. I think part of my blues this week stem from that. We were supposed to get to travel with him to Colorado as the older kids would be on spring break (and we were hoping to make a run up to Fort Collins to visit a very special cousin), but with a child on chemo, it's not a smart or realistic thing to do. If Sicily were to get sick or even run a fever, we might end up in an unfamiliar hospital in an unfamiliar area with uncertain scenarios. It's safest just to stay home.
I know the kids were looking forward to a little get away, as was I, but hopefully we'll be able to do that in the summer. The next best thing is to have family come to visit so they are pumped about that! Me too! Just wish my house was in decent order, but I know they don't care about that! Some day, some day!
Well, I need to do a little packing for the hospital. And check to see that Sicily has enough breathing room under her blanket...I hate it when she covers up her head! Please continue to pray for all the children battling cancer and for their families, as well, and for the families who've recently lost their child to this disease! Everyone have a good Wednesday! Thanks for all the support!