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Patrick reported that Sicily had a pretty good night. She was up around 7:30 and was waiting for her oatmeal to be delivered before taking daddy on the first of probably a hundred walks today!
Last night when the nurses came in at 7:00 to start her chemo, they asked her to show them her identification bracelet so they could compare it with the numbers on the chemo bags and when she pulled up the sleeve on her sweatshirt, it wasn't there. She is not very fond of it and has been wiggling it off and on all day. I figured she had probably lost it, accidentally of course, on one of the walking excursions earlier.
One of the nurses said, "that's okay, we'll just get you a new one." Sicily proceeded to slide off the bed and pulled the covers back from the end to expose where she had hidden her bracelet. The nurses looked at me and laughed saying that was about the cutest thing they'd seen all day. She is quite the character and still manages to surprise her mommy and daddy with the creative and sometimes sneaky things she does.
While her Aunt Pat and Uncle Robert were visiting again yesterday morning, she even attempted to play a game of hide and seek around the 3rd floor. As you can probably imagine, there aren't too many places to really hide, but we got a little creative. Aunt Pat brought her a new movie which she loves. It will be the new favorite for awhile.
The other kids and I probably won't go for a visit until this evening. It seems to work better when Sicily is one-on-one or just with adults. The presence of her sweet yet "busy" older brother Elias sometimes makes for a little chaos, so we won't over expose her. Plus, I have no idea what her numbers are right now so her immune system could already be compromised.
Sicily is really enjoying the fact that she can call home anytime she wants. She's already called home three times this morning to report different things. I love picking up the phone and hearing, "Hi mommy!" Makes me so happy to hear that sweet little voice!
Well, laundry duty is still calling so I'd better get busy. Sicily did call to request that I bring her more socks to the hospital. ; ) Everyone have a wonderful weekend!
Sicily is still doing good. It's such a blessing. Even though she has no outward appearances of being on chemo right now, my mind still knows what is going on in her little body. But, I am just so very thankful for her resolve.
I picked up the phone to call her this morning and I didn't hear a dial tone...the phone hadn't rung, so I said "Hello?" and heard a "Hi mommy!" One of those coincidental moments.
Last night, Patrick said the nurses said they've never seen a three year old act the way she does in the hospital. We still can't believe her ourselves. God made her very strong and very special as He knew what she would need to endure.
I laugh, though, at some of her behavior as she comes across to others who don't know her well, or even some that do, as a quiet, stoic little gal...when the opposite is actually the case with her. Our priest, Father Joe, stopped by for a visit on Friday and she didn't breathe a word to him, as she does so often. But as soon as he had walked back down the hall and turned the corner, she looked at me and excitedly said, "that was my friend, Father Joe!"
Patrick and I haven't yet instilled in her too much the practice of not talking to strangers when mom and dad aren't around, she just does it on her own...like she has a personal MUTE button. Like the Staples commercials...her "easy" button is instead a "mute - I'm not going to talk to anyone" button! Maybe that is just her coping mechanism, I don't really know.
She has such an adorable personality when she warms up a little, and that shines through for many...I just wish everyone could see it! In due time.
I'll be heading back to the hospital this afternoon to take over as Patrick will come home and help the older kids with their homework and shuttle them to their church activities this evening. We should be released sometime on Tuesday.
We will have an appointment on Friday for her CBC and a push of Vincristine. This hospital stay went so much better than I had anticipated. They may not all go this smoothly, but just knowing they can has broken down the dread I felt for future stays!
Everyone have a blessed Sunday...and thanks be to God for listening to all the prayers...can you all see them working as we do? Awesome!!!
Thank you for keeping us up on Sicily and her family. They are still in my prayers.
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.
Good Monday evening (it is Monday, isn't it? I'm starting to lose track!),
Today went pretty smoothly for the most part. Sicily is functioning on fumes as she refused to take a nap and I was just a little too tired to fight it.
She began another round of chemo at 3:30. Around 5:00 she and I nestled into the reclining chair to relax a bit and watch a movie. As her IV tower was parked beside us, I listened to the soft purring sounds the pump made as it dripped the necessary chemicals into my little girl's body, when all of a sudden Sicily began to complain that it felt like the needle was coming out of her port. I lifted her shirt up and sure enough, it was starting to come out and fluid was dripping.
I quickly called for the nurse and she came running in, or actually waddled in as she is pregnant and due Feb. 3rd. She donned on the necessary protective wear and gloves and began to address the problem. Another nurse came in to assist. Fortunately, they were able to push it back in without removing and re-inserting...which is a big deal. Sicily's port is worth it's weight in gold for it's function. It has to be treated with much precaution to keep it from getting clogged or worse yet an infection in the line (which leads directly to her heart).
There was some concern about the chemo getting on Sicily's clothing so I went ahead and changed her into pj's and the nurse gave me a big yellow bag with that scary looking three ring symbol on it and is labeled "Biohazard...Infectious Linen." That makes a mom feel at ease. It has to be washed separate from everything else once we get home.
The nurse also gave me a print out that lists how to handle "bodily fluids" once we get home for the first forty-eight hours or so. Fun stuff! But again, nothing we can't handle.
Patrick was to bring the older kids up for a visit this evening, but considering Sicily is without a nap, and we just experienced a little bit of panic, I told him to just stay home. Sicily's counts as of yesterday were at 1320, so her little immune system isn't up for handling anything extra right now, so limiting the kids' exposure to her is in her best interest...even though she was very disappointed nobody was coming.
Her little personality is still shinning right now in between her bossy spells and GI Joe commands. It has been fun to spend one-on-one time with her, but I think we are both ready to go home tomorrow, jump back into a little bit of a routine and build ourselves back up for the next hospital stay in a few weeks. We should hopefully get released by noon, if all goes well.
Her appetite is still not great. I even brought food from home yesterday (pepperoni and black olives) and she did enjoy that. What can I say about hospital food? It's not horrible, but....it's no Bonefish Grill, either! ; ) There's no Bang Bang Shrimp on the menu here (darn it)!
I just signed up on Facebook this evening in hopes of being able to post more pictures of Sicily and the rest of the Zeka clan, as I am very limited on this wonderful website. I may have to enlist Corinthian's help to manage it for me as he is our little computer genius! Well, Sicily and I are already both in our pj's with mommy having high hopes of an early bedtime. Wish me luck. Everyone have a peaceful evening.
Sicily and I are patiently waiting to be released from the hospital. She wasn't interested in eating breakfast so I am anxious to get her home to see if she'll eat something there.
Last night right after I posted, we had some visitors to our room. A nurse came in and asked if we would like a visit from a couple of therapy dogs. I said sure. In came the cutest little poodle named Ginger. Every muscle in her little body was at work as she wiggled and wagged very excitedly. Sicily was somewhat stand-offish, but she still enjoyed seeing this little ball of energy. She left and in walked a HUGE and I mean HUGE doberman. I was the one who started shaking as flashbacks from childhood popped in my head of walking past a doberman who angrily barked at me on my way home from school as a first grader. Back to reality...this big creature had a very gently soul. "Duke" had gentle eyes and I pet and talked to him so Sicily wouldn't be scared. Of course, she wasn't...and neither was I anymore.
After he left, I think Sicily regretted not petting the dogs as she asked if they could come back but they had already departed. Maybe next time. It made me think of Sicily's penpal, Phyllis...a beautiful lab that lives in Colorado. I could see her doing something like this.
Well, the doctor should return sometime soon so we can hopefully be home by lunch. That would be nice. We have a home health nurse coming to our house tomorrow around 11:30 to teach me how to give Sicily her shots she will be needing on a daily basis. Fun, Fun!
Everyone have a great day. Prayers are working...this all went better than we'd expected (even though I vowed not to have too many expectations!).
We made it home yesterday a little after noon and Sicily and Stowie were happy to see one another! She got right to work cooking in her pink kitchen and brought me all kinds of interesting food combinations! She's still doing good, no major complaints...which is totally fantastic.
I've talked to her about the home healthcare nurse coming later this morning to teach mommy to giver her the shots. She seems okay with it, time will tell! I think she'll do fine. She proudly told several of the nurses whose care she was in at the hospital, "I'm brave!" They agreed! I love her confidence! When she says she's brave, it makes mommy brave, as well! We continue to need that braveness as we march onward!
I need to ask for more prayers for our Wilm's Warrior buddy, Tanner Creed...he is back in the hospital as they are trying to figure out how to control the chemo side affects of pain that he has been experiencing for awhile. It is so hard to watch your child suffer and not feel like you can do much about it. I'm glad they are where they can hopefully help with the matter, even though it stinks to have to be hospitalized for it!
Sicily has as appointment Friday morning for a CBC and I think a potential Vincristine push...I'm not sure of her exact schedule of treatment...it's hard to calculate the week we're supposed to be on when we spent almost a week inpatient. I'm sure I'll get it figured out soon. I just like to know since I am such a planner...I want to work on "planning" other things in our lives, since we are still trying to live them!
Well, I'd better run. Sicily just came in to ask if she could feed kitty her treats...that could end up being the whole bag. I am soooo very thankful for how things are progressing along right now! God is listening...and answering!
Second update for today...home healthcare went great. Piece of cake! Sicily sat on my lap and I gave her the shot in her tummy. She was awesome. We are so blessed with this brave GIANT...as she was just described.
She is now sitting at the kitchen table working on some art work...painting with foam paints on pieces of foam (thank you Todd and Tami) and making some beautiful creations! Everyone have a great day! Thanks be to God!!!!!!
Good day so far. I just read Sicily a story and put her down for a nap. Not sure she will go to sleep very quickly as she insisted on having Stowie the cat in with her. I may need to go rescue Stowie in a bit.
Today Sicily has an increased appetite. She ate well for breakfast and lunch. I gave her a shot right before tucking her into bed. At first she ran and sat on the stairs when I said it was shot time, but then when I said I could just as easily give it to her there or she could sit in my lap as I did it, she came over and plopped down on my lap. It's over in no time and she will soon get more used to it, I believe. She doesn't cry or even flinch, so I know it's just the sound of the words, "time for a shot," that cause her alarm. It's for ten days after each hospital stay, to my understanding. We have an appointment in the morning for CBC and I will ask a few more questions.
All in all, things are going well for Sicily right now and we are so very thankful! She is so fun to be around with her little personality. She still manages to be a little stinker from time to time...but that is our little Sicily. She hasn't complained of anything painful or uncomfortable. I still wait with caution, as the ugly chemo side effects could raise their vicious heads at any time.
That is why we enjoy each day and moment that she is herself!!! There is nothing more wonderful than hearing her say, "I love you too much!" A phrase she coined herself. Instead of saying she wants a lot of something, she's always said, "Give me too much." From that evolved her "love you too much!" Patrick and I love hearing that. She also likes to say, "Love you the mostest!" I hear that several times a day. I "love it too much!"
Everyone have a great day and stay warm where ever you are...even down here in Oklahoma, we're at a bone chill'in ten degrees...Ouch!
Sicily had her appointment this morning to check her counts, which are in the "okay" range, and she got a dose of Vincristine. She used to get this drug as a quick "push" into her port, but the protocol has changed for the administering of this particular medicine and has to be given as an IV drip now. The only difference is that it now takes about twenty minutes instead of twenty seconds, and she has to drag an IV tower around the playroom, but do you think that slows her down...NAH!!!
We have to wait awhile each time for her blood work so it really doesn't matter too much. I will take her back in next Tuesday for counts again and then back on Friday for another dose of Vincristine. She will be admitted on Thursday, the 29th for her shorter inpatient treatment. It should be three days but I think it usually comes out to be a day longer, as the other inpatient stay was.
Sicily is in good spirits. She never went to sleep for her nap yesterday afternoon, so I gave up trying. Instead, as Patrick was running the other kids around to their evening activities last night, Sicily curled up on the floor near the kitchen and fell asleep. I covered her up with a blanket and the next time I checked on her, Stowie the cat was curled up beside her. That kitty loves to lay on blankets, but I like to think she loves her little friend, Sicily, more. It was so cute and sweet.
It's funny how animals can sense certain things. Stowie has become more and more tolerant of Sicily and I honestly think she understands Sicily's need for her. Love that kitty!
Well, I'm going to try to attempt to get Sicily to take an "earlier" nap today so I can give her a shot around 2:00. She asked if she was going to get a shot today and I said, "Yes, you have eight more days of them." She said, "Okay." Okay? She is so amazing! I still can't get over how she just accepts things. I still believe it's all a blessing with her age, but she has something else. Maturity! She has maturity beyond her three and half years! That's definitely a very big blessing from God!
Everyone enjoy your Friday...I love the weekends when we are all home together. We may be in different rooms or floors of the house, but we're still all under one roof!
Latest Update - Appointment this afternoon to check counts.
TUESDAY, JANUARY 20, 2009 09:33 AM, CST
Good Tuesday Morning,
Sicily is doing good. She seems to feel well and is still full of spunk and energy...she's Sicily! Thank you, God!!!
We have an appointment this afternoon at 1:45 to check her counts. I've been giving her the daily Neupogen shot to help boost her white blood cells so we'll see if it's working.
We had a very good family weekend. The kids were out of school yesterday so Patrick took the day off to spend a little extra time with them. Before Sicily goes to bed each night, she asks daddy if he has to go to work. When his reply is "yes," she comes back with an, "oh man!" She likes to have him around! As does the rest of the family. It's comforting knowing his office is so close...he's not a city away anymore!
Last night, I was enjoying a little down time and was flipping through the channels on TV when I came across the show, "John and Kate Plus Eight." They were having a show were they were answering viewers questions and one mother had asked Kate who inspires her. Her answer brought tears to my eyes as she replied, and I'm paraphrasing, "I'm inspired by parents of kids who have cancer." And they went on to show a bunch of bald headed little children, some wearing the all too familiar mask across half their faces to help shield them from enemy germs. I found myself tearing up to see the site, and then I thought, "but that's us."
I still sometimes don't see myself or Patrick, and the rest of our family for that matter, in that light. I still find myself crying over the site of and stories about other children. I guess due partly because Sicily is acting and feeling like a "normal" little three year old. A person would never guess she is on chemo. Her hair is over half an inch long and her eye lashes and brows have grown back. One of the little mysterious that still dumbfounds me through this whole process. I did make a comment about it last Friday to Sicily's onc nurse, but she just grinned and said, "it will fall back out again." Oh well, as least we do know, and more importantly Sicily knows, that it does indeed grow back.
I am just so very thankful for her ability to keep on living her little life. Makes it so much easier for the rest of us. Sure, we still have some issues...she refuses to take naps lately and we've come to the conclusion, darned if we do and darned if we don't. Either way, come evening she is hard to be around. She tends to have some issues with anger, especially when her brother Elias is involved. She is sporting a nice bruise under her eye from a "tiff" with him. She likes to try to take things away from him. A tug of war evolves and the next thing we know, she's sporting a shinner. Not from Elias intentionally hurting her. We've had to explain to all the kids that injuries to Sicily can be more problematic to her than they would be to them or us, only because of the medicines she has to take to insure we are getting rid of all the nasty cancer cells. I don't want them to feel they have to walk around on egg shells with her, but to be a little vigilant in trying to help keep her safe. It's not their responsibility to protect her, it's mom and dads. But they can play an important part in that role.
Sicily is what she is...a very active, strong willed, energetic little pistol. A person doesn't fair well in a dual with her. I've asked the kids to walk away from her when she gets "fired" up...I don't expect for her to win every argument or be given all she wants...quite the contrary. Patrick and I have decided to handle this situation with much optimism...we expect her to survive this ordeal and don't want her to end up a spoiled, self serving individual. That may sound harsh, but it's not. It's normalcy.
In a life that is robbed of such a thing, we seek it in anyway we can. Maintaining a sense of discipline, of teaching right from wrong, of hopefully learning lessons in respect of others and one's self...Sicily can still grow up to be "normal." Normal is supposedly just a setting on a washing machine, but it is also something craved by people who lose their sense of it.
I had a small meltdown on Saturday as I ran some errands around town. I came home upset and missing what others sometimes take for granted. Patrick hugs me...the kids hug me...I feel better. But I won't lie and say that we are always doing fine. For the most part, yes...but there are still days when I long for how things used to be. But on the flip side, Sicily's experience has taught me a lifetime of lessons I would have never, or most likely not have ever learned. I do feel richer and more blessed in the long run. It is, in a sense, a double edged sword. With that, I will close.
It is a very historical day and I am feeling the excitement in the air...or at least the transition of it coming from the TV. I sense an air of change coming with our new president...I am hopeful! Everyone have a blessed and enriched day! Prayers are still being answered!
Update #2 for today
TUESDAY, JANUARY 20, 2009 03:39 PM, CST
Hello again, second posting for today.
Sicily and I just got home from an appointment to check counts...and they are LOW. She's at a 200 (remember normal range is 6500 to around 1500). She did not need a transfusion as the two factors they consider for that are hovering above the need, so we will wait. We have another appointment on Friday for Vincristine and she'll get another CBC then. Her nurse strongly suggested not taking her out in public. We really haven't in awhile...keeping with the better safe than sorry motto.
She still seems to be doing really good, all things considering. I guess I acted a little surprised that her numbers were so low mainly because of Sicily's recent activities. She was out riding her bike and scooter a bit this weekend. And I guess I was under the assumption that with the low counts, came low energy...NOT for this little girl. She did fall asleep on the way home from the clinic so she got about a twenty minute nap.
Now she's rearing and ready to go again. She's upstairs playing with her big brother, Corinthian. The prayers to keep this little gal strong are in full affect. Not much slows her down. Again, thanks be to God!!!
I asked the nurse if the Neupogen shots might not be working and she explained that they sometimes take a little time and the main goal for the Neupogen is to help keep the counts from staying low. Sometimes when they drop, they don't want to come back up too quickly. This is hopefully helping them to not stay down for too long. I give her the last shot in this round on Friday, then we're back inpatient the following week beginning on Thursday.
Meanwhile, I look forward to the weekend for more good 'ole family time! Gets us rejuvenated for the next go around! Have a good evening all!
Nothing major to report today. Sicily IS taking a nap right now so that is a huge accomplishment for mommy! I'm using this time to run around the house like a maniac trying to do a little bit of cleaning and straightening up. Problem is I don't even know were to start. So I thought I'd take a minute to think about my "plan of attack" and journal a word or two.
Sicily is still doing really good and has been eating better than she has previously. That can only help her. She does good drinking lots of fluids as well. Can't complain there, either. Well, better get busy before I burn through all my "me" time! I can't stress enough how much we are seeing prayers being answered before our eyes with each and every day Sicily is herself. Thank you, thank you, thank you!!!
It's almost the weekend so "Hip-hip-horray!" Love the weekends! Sicily is doing great. Ate breakfast well and is watching the Wizard of Oz, again. But I love this movie as well and don't think I'll ever tire of it...okay, maybe after twenty consecutive showings I'd be ready for a break!
I've been wanting to try this picture montage creating program that I've seen on other care page sites and finally sat down last night to play around with it. Boy oh boy, I could sit around all day and play on this site. It's called One True Media and I did a montage of Sicily. It was a pretty rough draft but turned out really cool anyway. Like I said, I could spend all day tweaking and perfecting it in my mind's eye, but these days, something done is better than something perfect. I'm not sure how to direct anyone interested to the link except by going to my facebook and looking for it or maybe this link will work:
Give it a whirl. I'm horrible at making things work on the computer so when I do figure something out, I'm pretty darn proud of myself! It's pretty long, almost nine minutes. I could honestly make one to run a couple of hours. I love looking at pictures of my kids. I'm not ashamed to say I'm a proud momma! The song I really wanted to use for the background music is one by Martina McBride called, In My Daughter's Eyes...I cry every time I listen to it as it is so appropriate and fitting to my emotions these days. I absolutely love it! I'll figure out how to use it in another montage in the future.
Sicily's applying her own play make up right now so I'd better go and supervise. Maybe I'll get a make over of my own. Bring on the sparkling pink eye shadow! "Move over Barbie..."
Hey all who are keeping up with this amazing little girl and family, go watch the video, she is a beautiful little girl. Kerri did a great job putting this together. Sending hugs and prayers to Zeka family.
You only live once, but if you do it right, once is enough! Chemo Angel
FRIDAY, JANUARY 23, 2009 08:53 AM, CST
Good Friday morning,
Sicily is doing really good...she's playing with Stowie the cat right now. She more or less has her trapped in the office with the door closed so Stowie doesn't really have a choice of whether she wants to play or not. She loves that kitty!
I will take Sicily to an appointment at 10:15 for a CBC and a dose of Vincristine. She's been dancing around and acting her goofy self already this morning. She's a hoot! She cracked me up last night with something she said. Her daddy must have been teasing her as I heard her call him a "knucklehead!" Normally I would discourage from name calling, but that was just too funny and he probably deserved it for teasing her. ; )
Pray that her numbers are on the rise. The way she acts I still have a hard time understanding how low they are...but then again, we're not dealing with a typical three year old...we're dealing with Miss Sicily Evelyn Zeka!!! I'll update later on what I find out.
Hello, again...second posting for today. Lesson for the day...be careful (and grateful) for what you wish for! Sicily's counts shot up like a rocket to outer space. Unbelievable!!! They are now at a whopping 16,200 (up from 200 just on Tuesday). I had to take a double take when nurse Terri handed me Sicily's CBC report. That may explain her energy, I would assume.
I was actually worried that her numbers wouldn't go up enough before her next inpatient treatment next Thursday. If she happen not to get over 750 next week, her treatment would be delayed and pushed back a week. Terri did explain that yes, her numbers are very, very high, but it's the way Sicily's body is reacting to the Neupogen shots I have been giving her the last nine days. They'll come back down pretty quickly. Needless to say, we get to skip the tenth and last shot in this round that I was supposed to give to her today. YEAH! Nice to know they actually work for her. Her numbers shouldn't sky rocket as high each time as her body will eventually adjust to the medicine.
I seriously doubt this little fire cracker will take a nap today. I've started to not even attempt to put her down because she actually goes down by herself sometimes...usually on the floor and in the most inconvenient places.
Yesterday afternoon, she and I were in the office and she was laying on the floor looking at pictures when she looked up and asked me if she could close her eyes. Of course I said, "yes," and proceeded to ask her is she was tired. Her answer, of course, was "no!" But in less than five minutes she was fast asleep on her back with her arms folded behind her head and her legs up and crossed at the knees. She is notorious for doing things on her terms.
We try to figure out ways for her to think something could be her idea, but she's too smart to play along. She is quite the character. She never ceases to amaze me with the things she notices and picks up on. Her little three and a half years of life have seen and been through so much thus far, but her life circumstances are molding her and building her strength in character and attitude and I don't think there is anything this little half pint can't do!
Being her mom and watching her grow so much these past few months has been an experience that has affected my life, and many of those around us, as well. To deny that God is reaching out to us through her would be a shame. So I am still so thankful for God allowing me to be so open to all that is around me! There is so much more meaning in life these days!
Everyone have a wonderful weekend and know you all carry the responsibility for the reason Sicily is doing so well. God listens, and God answers! BTW, please keep praying for our buddy Tanner Creed, as well. He's just not feeling good and we want him to be up and about enjoying his life like a twelve year old boy should!
I'm so cold that I have to right in blue. BRRRR! Kids are home from school due to the freezing rain we received yesterday and the sleet today. The little frozen pellets are still tapping on the window of the office as I type. It's really pretty outside except for the sight of our poor weeping willow tree that we planted in October. It's bent completely over, but luckily, as it is young it will most likely rebound without too much damage...a lot, hopefully, like little Sicily with her cancer.
She is doing remarkable. She loves having her siblings home to entertain her. The only thing that would top that is if daddy were home, too. But somebody has to pay for keeping us warm in this house! ; )
I mentioned yesterday that Sicily was losing her hair again...well it's completely gone. She is bald and beautiful once more. She and I sat down last night and had a hair pulling out party. I can actually boast that I pulled my child's hair out, even though the feeling is usually the opposite. She insisted we do it as she had been pulling little chunks out all day and there was no pain involved what so ever. She thought it was fun. We put a little trash bag beside us and manually de-folic'd (if the word even exists) her head! She still could care less about the whole hair matter, and neither could I at this point.
My friend Traci commented after the first hair loss, "at least you know the chemo is working!" And that it is. At least we are hopeful it is. It's working on her hair cells, let's just pray it's also working on any cancer cells that may have been left floating around!
She has a CT scan scheduled for February 17th in OKC to check just that. I'm not feeling any "scanxiety" as of yet as it seems far away and we truly do live one day, and one appointment at a time! Well, I had better get off of here for a bit as this computer has to be shared with others. Everyone please be safe where ever you are and try to keep warm!
Michele, Sicily's mom, Kerry, is truly a super gal - the entire family is wonderful. Got to talk with Kerry last night and she is such an incredibly strong woman who is trusting God. She will be the first one to tell you that she has her moments but knows that it is all in His hands.
Lord willing, Reynold and I will be making plans to go out to Oklahoma this summer to see this sweet angel face and her family.
Will eagerly look in my mailbox for the package -- thanks!
Sorry I've been absent...we are on our third snow day and we've either been playing outside or one kid after another has been playing Webkinz or Club Penguin on the computer...so mom has to wait her turn. We had fun playing outside yesterday, despite the bitter cold. It wasn't too bad. Our backyard has a nice slope to it which feeds into a vacant lot so the kids had a blast sledding down it. Guess we may nix the idea of putting up a fence for now as our yard provides for nice entertainment...maybe for only two or three days out of the year when this area gets snow or ice, but the kids absolutely had a blast! We have my brother Kevin's old wooden sled and it's still in great working condition! He can't get any use out of it as he and his family live in South Carolina, but we've managed to put a couple of sledding miles on it in Kansas and now in eastern Oklahoma. Good memories.
I'm finishing up some packing as Sicily checks in for inpatient chemo at 1:00 today. Her siblings get to tag along with us to the hospital...what fun this afternoon will be! I've packed plenty of movies and a deck of cards. Question is can they get along without constantly bickering and nagging on each other for several hours? Wish us luck!
Sicily's all set with her Hope and Faith bears, which tag along on most trips. Can't get along in life without "hope" and "faith!" ; )
Hopefully school will resume again tomorrow or it may be a really long day at the hospital. With so many bused students in this school district, I guess those with deciding power ride on the side of precaution. Two snow days in a row is enough for me. By the third day, I'm ready to shoo the kids out the door! I'd better finish up my packing. I'll report more later if there is anything worthy. Everyone be safe and stay warm!
Nothing major to report. Sicily does seem extra tired this go round. She will be getting a transfusion sometime in the next couple of days as she is in need of one.
Getting her to eat much has been a struggle today, but nothing we haven't battled with previous stays. She's really missing her daddy right now and has been crying for him so I'm glad he will be with her tonight and tomorrow. She just now fell back to sleep so I'm hoping a little nap will do her some good.
For some reason I'm really missing "normal" right now. I guess because it's the weekend and our family won't be together. I'm just having one of those days.
I'm at home with the other kids as Patrick came last night to switch places with me in the hospital. It's his turn to be on watch. He had a bit of a rough evening as the needle came out of Sicily's port when he tried to pick her up and a new needle had to be inserted. She just started getting her Cytoxin chemo drug but fortunately it hadn't made it all the way down the tube and through the needle yet. It was a little traumatic for Sicily and daddy, as well, but they managed to get through it. He said she was a brave little trooper as always.
They are still at this moment waiting for her transfusion which we had expected to start this morning, yet nothing has happened. I'm a little on the miffed side as she was supposed to get it and be done before her next chemo treatment which is to be started around 5:00pm. The transfusion takes a few hours, so it looks like her chemo will be pushed back, which means she most likely will have to stay a good portion of tomorrow in the hospital. After the chemo drips for one hour, Sicily has to get Mesna, the drug used to protect the inner lining of her bladder, once every three hours for three consecutive doses, so it takes nine hours. Once again I allowed myself to run on expectations and I'm letting them upset me. I should let it go, but I just want my family at home!
Last I talked to Patrick, which wasn't too long ago, I could hear Sicily singing and carrying on in the background. At least she is not in any pain or miserable for that matter. If she can take it, so can I!
I know a lot of people question and even ask how we do this. I honestly think I am going through life right now with rose colored glasses. It's easier to act and look like things are normal sometimes, at least in my own mind. And it's pretty easy to do when you have such a little powerhouse leading the way, as Sicily does. The only problem is that when news is bad or complications arise, I feel like we have farther down to fall.
Case in point, when we received the news of unfavorable histology after Sicily's initial surgery. Things up to that point had gone so well and smoothly that we just knew they would continue to do so. I was alone with Sicily in the hospital room rocking her to sleep in a chair when her oncologists came in to talk to me. He confirmed that Sicily's tumor on her right kidney contained anaplasia...really bad cells. I sat and cried. And cried. And cried. I know this doctor has had to report not so good news to parents before, but he sat there almost speechless...not really acting or knowing what to say to me. I was a little dumbfounded but maybe that was his way of dealing with the situation. I don't know why my mind has regressed back to that day...maybe it's so I can buck up and see how really good Sicily is doing right now and that this hospital stay, like the last, is a whole other picture and experience than before!
As I held her Thursday night and watched the red devil (the knickname given to Doxorubicin for it's color and toxicity) drip into my daughter's IV, I prayed and prayed that it is doing it's job...and for that, time will only tell. So I ask that that be the specific prayer request for Sicily right now...that the chemo she is currently receiving and the past radiation treatments are doing what they need to do with minimal side affects and minimal harm to the rest of her little body!
I love that little girl more than life itself, as I do my other wonderful children. I just want so bad for her little body to be healed! Pray, pray, pray!
As you can see, I'm not a very big sports fan. Super Bowl Sunday to me in the past has always been just a good excuse to be around good friends and pig out on lots of fattening food. This will be our first time in five years we've not been able to fulfill that tradition. We were invited (thank you old friends!) but life these days can't be planned out too far in advance for us...we are learning to deal with that.
I am doing much better now, thank you all for the supportive and understanding words! I've met some very special people through Sicily's ordeal. Some I will get to eventually meet in person, some will continue to be virtual friendships, but all have been incredibly important and have sustained me through some of my very low moments. Again, thank you so much!
Sicily and Patrick made it home before 11:00 this morning and then we had a wonderful visit from some Kansas family members. Sicily did receive her transfusion at about 3:30 in the morning. It was important for her chemo to stay on schedule yesterday evening, so Patrick opted for Sicily to get her transfusion during the wee hours of the morning instead of waiting until later as it would push back her release. It wasn't too big of a deal as she slept through most of it. She had to take Tylenol before hand and wouldn't let the nurses give it to her...she only wanted daddy. But she slept through the three and a half hour transfusion, even the hourly vital checks, so that was good.
She came home and walked in the door and announced, "We're home!" Of course she had to find Stowie first thing and as I held kitty she literally gave Sicily a kiss and sniff on the mouth. Those two need one another!
While in the hospital, Patrick figured they walked around the 3rd floor the equivalent of over a mile. One of the nurses said that fourteen laps around there equaled a mile and Sicily and daddy did ten just yesterday. Again, the exercise that little lady gets, voluntarily mind you, can only be to her benefit.
She enjoyed her day with Aunt Valerie, and cousins Bonni and Gage. After they left she fell asleep in my arms watching her favorite show, "House," as the USA network is showing a seventeen hour marathon of it. She is so funny...a three year old who likes "House!"
You may ask why, and normally I would not let my young children watch such a show that contains adult situations, but she is completely fascinated by watching other people on TV laying in hospital beds connected to tubes and IV's. I think it brings her some sort of comfort. Yes, she is a funny little character.
Maybe it's early education into her potential field of choice. She walks around with a real stethoscope and puts it on our chests or back and tells us to "breath!" She says she is a doctor...somedays, she's a nurse. Either way, she's going to be good and very knowledgeable with all her "experiences".
I asked her last night if she knew she was going to need a transfusion during the night and she said, "yes, I need more blood"...just as simply as if she said she needed chapstick on. Very matter of fact. But that is how she has handled most of the things that have come her way. I laugh and shake my head at her acceptance. I wish I was able to accept things in life the way she does. If it needs to be done, and if it's for the better well being, then just do it. Wouldn't life be so wonderful if we all looked at things in that light? Acceptance...sometimes a hard word to swallow...sometimes a hard word to understand...always a word that is craved and hoped for!
Once again, Sicily has strengthened my resolve and I will continue to march in an army behind her!
Sicily is doing really good. Whoever's blood she received over the weekend had to have come from an Olympic athlete...she has more energy than I know what to do with. Amazing! She's spunky, happy, mischievous Sicily!
Last night she was "jogging" around the house with a string for Stowie to chase when I naturally reminded her, as an over protective mother usually does, not to run in the house. Her reply was, "I know, I only have one kidney left!" Okay...the point must have been made before hand and actually sunk in somewhere along the way. It's not that I don't want her to run and have fun, I prefer that none of the kids run in the house...I just want her to be careful. And for the most part she is. But all three of our other kids have had facial stitches do to normal kid activities...wrestling too close to a fire place hearth, running up a wet drive way, slip and sliding with a buddy...so I am just a bit on the weary and over cautious side, especially where Sicily is concerned.
I couldn't slow her down if I wanted to. She has drive and energy too hard to contain! I wish I had just a fraction of what she has! Sicily's next appointment will be on Thursday to get Vincristine. I start her Neupogen shots again today for the next nine days. We'll wait until daddy gets home as she likes for him to hold her as I do it. We need to keep them on a pretty routine schedule, so evenings seem to work the best. That way I have the whole day to remember that I need to do it. I did great last time. I put a note on the refrigerator and that seemed to be enough of a reminder.
Update from Sicily's mom, Kerry - thanks for your prayers
TUESDAY, FEBRUARY 03, 2009 12:31 PM, CST
Things are about the same around here. I'm very low on energy as Sicily didn't sleep well for some reason so I ended up rocking her about 1:30 and then attempted to sleep with her in her bed. It was a restless night, to say the least, but she is spry and perky so far today...mommy isn't...yawn!
I was supposed to take her to the radiology clinic in OKC tomorrow for a follow-up but called and asked if they could squeeze us in, instead, on the 17th when we take her for a CT scan. They were very cooperative. So that saves me a trip tomorrow.
Not much else going on, just trying to get through the daily grind and keep up with little miss Sicily! Her sweet beautiful smile still lights up my day, no matter how gloomy it may be!