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We had a wonderful Thanksgiving holiday at my sister's house. Sicily did great and really enjoyed herself, despite the late bedtimes and early mornings (the typical schedule of being around siblings and cousins...she feels she needs to try and keep up). Unfortunately, when we returned home yesterday around lunch time, she started running a fever of 101.1. We know the drill that if she goes over 101.5 we need to call the doctor and a trip to the hospital usually follows. Guess what, by evening she was at 102, so the call was made and the request to travel to the hospital came in.
As I unpacked some suitcases I turned around and re-packed another. Sicily was not happy and asked if she could just go to bed early. Breaks my heart. Because of her port that is a direct line to her heart, anytime she runs a fever we have to worry and be concerned that she could have an infection, therefore requiring the need to go to the hospital for cultures. As has been the case a couple of other times, by the time Patrick got her to the hospital, her fever had gone down quite a bit, but I will not risk missing something. I know it may be an inconvenience, but we just can't take the chance.
On Friday a blood drive in Sicily's honor was held in Wellington, Kansas, her birth home, and I don't have any details yet other than I think it went pretty well. I just wanted to thank everyone who participated and was a part of it. It means a great deal to us! ; )
I just wanted to jump on here real quick to update. I wish I could spend more time journaling, but there just hasn't been enough time lately and I apologize if I left anyone feeling uninformed. There hasn't been much to update until now, anyway, and I actually found myself enjoying the time away from the computer for a few days, even though I didn't think I could or would manage without my connection to the outside world. We did not have a lot of down time while at my sisters house so that helped!
Everyone have a blessed Sunday and I'll report more when or if I find out anything concerning Sicily. I'll be switching places with Patrick at the hospital after lunch if he can't coerce them to let him bring her home until the cultures come back, which isn't supposed to be until much later tonight. Sicily just wants to be home with her kitty!
No changes from last time...still waiting (scroll down to the earlier posting if you are visiting for the first time today). I just wanted to jump back on here to share a video clip with you (if I can get it to work right).
This explains where I get some of the wind beneath my wings...Pablo's mommy and daddy, Jo Ann and Jeff, give me the strength to keep fighting this fight. Even though my love for Sicily is my main fuel, having this couple behind us makes me feel like we stand a chance at making a difference in the world of childhood cancer! They are amazing and I am so thankful that we have been a part of each others journeys! If this link will not work, I posted it under “Resources” up at the top and it should work (scroll down to the end).
Sunday, November 29, 2009 1:45 PM, CST Hello AGAIN!
Third post for today, sorry...THE PRINCESS IS HOME! Daddy is pretty good at twisting arms. My apologies to Dr. K...I promise he won't regret his decision! He “hesitantly” let Patrick bring Sicily home. I think they all know us well enough by now to trust us to bring her back if her fever were to return or any other symptoms arise.
We are literally a short twenty minute drive to the Children's Hospital and plan on keeping bags packed from here on out. This will most likely be a drill we will practice over and over and become more accustom to with this ICE protocol.
Patrick was also told to have me expect to stick around on Tuesday when I take her in for blood work to also need a blood transfusion as her platelets and hemoglobin are getting pretty low. I noticed small little bruises on her legs last night...a tale tell sign! I guess we were kind of surprised to be hit this early with the need, but that also says to me the knew chemo treatment is hard core and powerful...what we need to kick this cancer to the curb once and for all. It's going to be a lot harder on us than before, but we just need to tweak our expectation scale a little and we can handle it.
I'm just happy today, this day, for what we have here at home. Christmas music is playing in the background....a fire is crackling in the fire place...it's starting to drizzle outside under a gray sky...and our house is full of life. We will hopefully attempt to put up the Christmas tree either today or tomorrow. Gotta do a little more “de-cluttering” before that can happen! I did manage to put away the remaining Halloween decorations away last night along with the rest of the Fall stuff. Anyone who knows me knows how much I enjoy adorning anything that will stand still long enough for me to decorate it. It helps with the desire and need to carry on our “normal everyday lives!”
I am asked often “how we do IT...how do we manage everything?” There is really one and only one simple answer... ”By the Grace of God!” My oldest sister has always told me, "God's Grace is sufficient." I don't think I ever really understood that message until now! I will also admit our ability to manage our life is by letting go of certain things. Much to the dismay of my husband, and quite frankly myself, the condition of our house has been “let go of!”
On the outside, I think our house is beautiful. The kids refer to it as our castle...my mom calls it a gingerbread house...I must say it is pleasant on the eye! On the inside, it's an absolute mess...but in my eyes it is a beautiful mess. The rooms are cluttered, but that clutter makes this house look lived in by an active family of six. The clutter consists of graded school papers and artwork that I don't have the heart to part with (yet)...it's dolls sprawled on the floor half dressed...it's multi family dwellings built out of colorful Legos... it's holiday decorations, part of them left over from Halloween, some proudly displayed for Thanksgiving. There are books and papers and medical supplies spread across the kitchen island that is shared with the living room space. There are shoes in every shape, color, and size...everyone's except Patrick's. Clean laundry is usually found in a hamper or strung across the back of the couch, and piles of dirty clothes patiently wait on the floor for their turn at a spin in the washer.
There is no denying our house is a mess, but it's our house where we live and love and laugh and cry, despite the mess. One of these days things will be in order! One of these days things will find their place, unfortunately not on their own so I will have to assist them. I'm still waiting for Mary Poppins to show up at our doorstep and start singing, “Just a spoon full of sugar helps the medicine go down,” as she snaps her fingers and things magically put themselves away! Until then, we will do our best.
My sister excitedly called me one day to tell me of a cleaning company that advertises that they will “clean around the clutter.” I laugh at the thought of that mental picture. After spending fifteen minutes in our house, they'd say “Done...we did the best we could” and hold out their hand for payment. I can clean around the clutter. I just need to deal with the clutter! But right now it's not going to happen because I'm dealing more with another kind of “clutter” in our lives. I don't mean to refer to all of our medical situations as clutter, even though they are responsible for “cluttering up my mind and emotions!” I just need to focus as much of my energy as possible on them instead of worrying about the pair of socks laying in front of the entertainment center. So, to make a long story short, we “manage” by “not managing” (the house, that is!)! This is just the way it is for now and it won't be forever!
So, I'm off to drag a nine foot Christmas tree out of the attic. First I must hunt down one furry feline so she doesn't follow me in there like she did last year! ; ) And I need to "sit on" (figuratively speaking) one little thirty-five pound four-year-old as to not have to make another trip to the hospital. She promised she would take it easy today and tomorrow!
Have a good one and I will try not to make a fourth entry today! ; )
Location: Nahla, a sick little girl- came to rescue w/ pneumonia, getting a breathing treatment. www.mwdr.org
The mess will still be there tomorrow...
but the kids will be all grown up!!! That is what my mother used to tell me all the time when I complained about how messy my house was. I only have 2 kids, but there was a point in my life when I did have 5 babysitting additions!!!
My daugher is now almost 21, and away at college, and my son is 15, and a sophomore in HS. I look at them now, and I know exactly what my mother was talking about. They grow up sooooo fast.
My mother-in-law once told me that my housekeeping skills had diminished since I had children. I told her that I would rather spend my time having fun with my children than spend it cleaning the house! I had play groups at my house, I was the Girl Scout troop leader, I made kool-aid and cookies for all of the kids that were always over to play!!! Our house was the FUN house. We always had toys and games, and fun!!! AND, I wouldn't change it for the world!!!
So, Kerry, your house will be there tomorrow, and you will have plenty of time to clean up the mess, but until that time, you are doing what every good mother should do... make the house a fun place to be, so your kids and their friends want to be there, without having to worry if they dropped a crumb on the floor. I always said that was the reason for a dog in the house!!! To clean the floor, when you're too busy making cookies!! LOL!!
I know you also have hospital visits and doctor visits and more to throw into the mix, as well. But, whats the point of putting laundry away, when it's easier to get together for the kids before school from the living room???
My thoughts and prayers continue for Sicily, Isabella and the rest of your family!
Tuesday, December 1, 2009 8:33 AM, CST Good Morning,
It feels like Monday around our house as the kids had yesterday off from school. So I am a little off...like that isn't how I am every day? ; )
I'm getting ready to take our little "Pocketful of Sunshine" to the clinic for her CBC. I will be absolutely shocked if she needs a blood transfusion, as we were told to possibly expect. This little gal has been pinging off the walls lately. She has more energy and spunk than the whole rest of the family combined. Where in the world is this coming from? We are exhausted trying to keep up with her, but grateful, none-the-less, that she feels this good. If she does need a transfusion, I can barely stand the thought of what she will be like after she gets it!!! ; )
Sicily and I are back from the clinic. She did not receive a whole transfusion this morning, but did get platelets. Her platelets were at 9...normal range is between 186 - 348. She was scraping the bottom of the barrel. Her hemoglobin is 7.7 with the normal range of 11.5 - 13.5. Her white blood count is .7...should be between 4.6 - 9.6. She will continue to need the GCSF shots to help boost it back up. I will take her back to the clinic on Friday and she may get a transfusion then.
In our minds, Patrick and I had Sicily scheduled to go inpatient for another round of chemo next week sometime. We are now learning that this time around is completely different. We aren't following a piece of paper, often referred to as a road map, that tells us what we will be doing from week to week. We are now focusing on what Sicily's body is telling us is okay to do. She may not be ready for another treatment next week.
Dr. Hum says they like to have a 21 to 28 day window between treatments, but she has gone as long as five weeks in between to let the child's body recover. I long ago quite writing in pen on my calendar and now it's even hard to pencil things in. When I say we live from day to day, we truly try not to look past the next week because we don't know where we will be or what we will be doing. It's not a bad thing. I am a planner by nature so it just takes a little adjusting and getting used to.
It still amazes us how well Sicily is feeling when the numbers on a piece of paper say otherwise. Those numbers don't take into consideration "who" they belong to! ; )
As Sicily sat in a chair in one of the exam rooms receiving her transfusion of platelets, she fell asleep...sitting up, legs pulled up like a frog, head resting on her own shoulder. It must've been the Benadryl and Tylenol cocktail she swallowed before hand. Our nurse, Laura, and I joke about the color of the bag of platelets being pumped into my little girls body. They are a cloudy, yellowish color. I first thought they looked like the fat drippings from a turkey (I must still have Thanksgiving on the mind) and then considered maybe lemonade, but lemonade is still too pretty. We settled on green tea. For those who don't drink green tea...it is not green! ; ) This is how I spend my time on days like today.
I've said it before and I'll say it many times again...going to the pediatric oncology clinic is like visiting family or dear friends. When we go, I can be assured I will have someone to laugh with, someone to chat with, and if needed, someone to cry with, although I feel fortunate I haven't had to do too much of that. These are very special people. Day in and day out they take care of sick children. That has to be one of the hardest jobs in the world, in my book. Yet, I leave there each time feeling good. Even through all the sadness there is laughter and joy. That's how life should be lived beyond the pediatric oncology clinic doors...the outside world should take note.
It's funny when Dr. Hum tells me she needs us back in on Friday, and my thought is, "Great...I get to have conversations with other adults again! Twice in one week!" I have plenty of conversations with Patrick...I'm not trying to discount him. Other stay-at-home mothers understand what I am saying! Now that I am back to hunkering down during the day and not taking Sicily anywhere unnecessarily, that caged in feeling starts to creep up on me. So, the bottom line is, I like our trips to the clinic. It has to be done so I might as well enjoy it, or better yet, love it as just another part of our lives!
"Dr. Sicily" is in so I better go check if it's time for my shot. She plays doctor more now than ever before. And she's pretty darn good at it! ; )
Sorry for not updating...I'm under the weather with a cold/sinus infection (I think) and am trying to get rest here and there as to hopefully get over this soon!
Patrick is on his way to the clinic with Sicily to check her numbers and possibly have a blood transfusion. One of my biggest fears about being around other people with Sicily is for her to catch even the slightest cold, as it could put her chemo treatments off and could cause other complications for her, as well, since her immune system is completely compromised! Therefore I don't want to expose myself to other children in this setting so Patrick had to take her in.
She is doing pretty good right now and is still full of life and energy. The older kids will have a surprise when they come home from school as she is almost bald again. Within a quick time span of about fifteen minutes this morning, she and I sat on the living room floor and removed handful amounts of hair and put it into a plastic baggy. She still has some around the top of her forehead and around the bottom over her ears and above her neck. It's amazing how quickly it came out this time.
Once again it proves to me how high a level of chemo drugs she is on. If the new drugs affected the cells responsible for her hair this fast, maybe they are killing the cancer this fast, too! We can only hope. After her next round of chemo we will most likely check and see what is happening.
I'm going to finish my hot tea and head back to bed for awhile and try to sleep off this pain in my head!
I'll update later after Patrick and Sicily return.
Sicily only ended up needing platelets again this morning, so her hemoglobin and red blood cells must be on their way back up. We will continue to give her the GCSF shots to encourage those white blood cells to multiply like rabbits! We need her ANC to be at a certain level before we can throw another treatment at her. It might be Wednesday or Thursday of this coming week, or possibly the following Monday. Never-the-less, I'm on some antibiotics to help me get over this infection so I can be ready!
I'm a wimp when it comes to fighting the head pressure of a sinus infection! Sicily has vowed to take care of me even though she said on Wednesday when I started to feel this coming on..."Mommy's don't get sick!" Well, unfortunately, they do. I personally think we should be immune to sickness so we can take good care of our families...we need a "vaccine for sick mommy's!" I have been able to rest today thanks to Patrick's help, and Sicily always considers a day with Daddy to be very special! I'm just glad it's the weekend!!!
The older kids were a little surprised with Sicily's appearance when they came home from school, but she assures them that her hair will grow back again! After I saw her pillow this morning I knew we had to sit down and do a little "removing" of the loose hair follicles. She literally took handfuls out at a time. I barely had to touch areas of her head and the hair came out like it was just laying there and had never been attached at all. She still finds humor in it all and it still breaks my heart, but I keep reminding myself that it is just another sign of what could be happening to her cancer!
I try to imagine from time to time that it's shriveling and shrinking and will soon completely disappear. I'm tired of it being in my little girl's body where it doesn't belong...as California Governor Arnold Schwarzenegger would say (or what he used to say), "Hasta La Vista, Baby!" ; )
Sicily is doing great and is completely bald again. Bald and absolutely beautiful! And, I might add, she is bald and proud of it...just as she was before. I did not know how I would feel having her lose her hair for the third time, but it's funny how used to something you can get and miss it when it is gone. I was actually so used to seeing and rubbing that smooth little hairless head that I think I missed it. She just glows and you can see her twinkling eyes even more now. It's only hair! It will grow back!!!
I just love to look at my bald beauty! It's like a visual medal of courage she can proudly display to the world. I might add that daddy is bald again, too! Sicily, Isabella and Elias took turns shaving his head while Corinthian handled the video camera. We started out by shaving the sides of his head and left him with a mohawk. He has never sported a mohawk before. I have pictures available to the highest briber! Just kidding. I will attempt to post them sometime soon...quite funny!
On a more somber note, my heart has been aching for sometime for a family in Arkansas whose little girl was just diagnosed with leukemia in September and tomorrow morning they will be removing her from the ventilator around 9:30 and letting her peacefully (hopefully) drift off to heaven. It could happen right away or they say she may hang on possibly for a day or more. I have no connection to this family other than that they were brought to my attention by another Wilm's family who met them in the hospital when they were undergoing treatment.
The CaringBridge world is a large world but becomes very small when people start sharing names and site information and then we sort of just melt together and support one another through our words via the internet. We have been personally amazed at the out pouring of care and compassion we have received from people whose paths we've never crossed. So that is why I am asking that tomorrow morning, Sunday morning, as some of you are preparing for church, please think of this mother and this father who may be holding their little girl for the last time.
The mom, like myself, is the one who does the journaling and she has from day one been positive about their circumstances. I have great admiration for how she has handled the situation they were quickly thrown into. I have only posted on her site once, even though I read daily, sometimes multiple times a day, the words she pours out for all to read. I felt the need this morning to thank her for showing other's how to continue to love and trust in God even when her heart was about to be completely broken in two.
I have read so many other journal entries from other mom's in desperation who have turned their back on God for what He took away from them. I keep my thoughts to myself as I read their agonizing words, but can't help but think...”Is He really taking something away from them that wasn't really theirs to begin with?” Our children are gifts from God. As parents, our job on earth is to love them, provide for them, protect them to the best of our ability, and if the time should unfortunately come, we are to figure out a way to let God have them back, if that is His desire.
It is unthinkable to most of us. We, as parents, are supposed to out live our children. We are not supposed to have to plan funerals and memorial services for our little ones! But those who understand from the beginning that God did not promise any one of us anything other than an eternal life...life after what we live here on earth...whether it be six years or ninety-six years...are the people who find peace and understanding in God's grand plan! At least that is how I have to think about things when I can easily put myself in this mother's shoes tomorrow morning as they remove all the tubes running in and out of her little girl's body. That is how I get through the daily grind sometimes when I don't think I have enough energy left in my little pinkie to keep going. I always remember that God, Himself, understands what it's like to lose a child!
So, as you prepare for the day or for the upcoming week, if something isn't quite going your way or working out how you'd hoped, think of the family in Arkansas who will be saying goodbye to their precious little angel and giving her back to God...right before Christmas! I'm not trying to be a downer...actually, I'm hoping to ease some burdens by sharing this story and hoping others will truly understand the meaning of Christmas and never forget how truly blessed we all really are!
One more thing, I wanted to thank all the wonderful people in our beloved town of Wellington, Kansas who took part of or helped out with the dodge ball tournament. We would have given anything to have been there to cheer everyone on. Patrick would have also loved to have been a participant himself. He still hasn't lost is competitive athletic streak...he just doesn't get to put it to use very often anymore! I hope someone was there snapping pictures and could send me a few. We would highly enjoy them!
I also wanted to thank some dear old friends...some of the most wonderful and thoughtful people a girl could have on her side...my old classmates from Enid High School. We can't thank you guys enough for your generosity and “creativity!” What an awesome concept and how incredibly useful! ( I have to share...we received gift certificates for a restaurant delivery service. I can order dinner for myself when inpatient with Sicily and at the same time, have something delivered to Patrick and the kids at home. Genius!) Thanks, guys!!! ; )
Everyone continue to have a wonderful weekend! Rest assured we are doing good...there is still laughter a plenty through out our house. We continue to just do the best we can!
Just a quick update...Sicily is really doing good. She has the best appetite we have seen since she was diagnosed in August 2008. I'm going to have to kid the doctors about slipping her some steroids. We are beyond happy that she is hungry!!!
She has also been doing great with her GCSF shots since we figured out the best place for her to receive them...in her tushy! I lay a little soft bear shaped cold pack on one of her cheeks for a few minutes then rub her skin with an alcohol wipe and then count to three, poke, push the medicine out of the needle and we're done. She stays silent the entire time and then hops up with a huge grin on her face. Then it's off to the freezer for a Popsicle for her reward. Works for us. Sure is nice now as the drama and dread have been removed and we can help those white blood cells boost their body protecting powers!
Sicily and I are getting ready to head to the clinic for a 9:00 appointment to see if her counts are good enough to throw another round of ICE at her. Pray she is where she needs to be!
I'll report later the findings and whether or not we'll be going inpatient in the next couple of days!
We are not inpatient and won't be going inpatient for awhile. Imagine my surprise yesterday when I found out the decision was made and someone forgot to inform us that the drug Topotecan would be added to Sicily's regimen. I pride myself on knowing and being involved in what is going on, but somehow this slipped past us. I have yet to speak to our oncologist here to find out who, when and why this decision was made, but at the same time, I am okay with it. Adding Topotecan now means Sicily is on the ICE-T protocol.
I know it sounds funny...I have visual pictures of a rapper popping up in my head every time I think about or say the letters together! This drug will be given daily (five days during the week) for two weeks in the clinic, starting next Monday. I will take Sicily in everyday and she will continue to have a CBC and be examined and watched closely. She will even go in on Christmas Eve and Christmas Day. On Christmas Day we will just have to take her up to the third floor for her infusion, which I am told takes about a half an hour, but then she can come back home.
The week after Christmas will be the time to evaluate by undergoing tests, which will be determined as the time gets closer. I'm still trying to just live one day at a time, so having a change like this...finding out we aren't going to spend the next few nights in the hospital, hasn't disrupted me too much. I hadn't started packing yet as I am learning now and accepting that things can change, and change drastically, at a moments notice.
I am and will continue to be a little on the anxious side until I can talk to the doctor. I have a hard time dealing with the feeling I am not completely in the loop. I understand how busy and stretched the doctors are and that keeping one family straight from another can be a challenge, so that is why I will work harder at double checking and asking more questions and making sure we are all on the same page! Some days it feels like a full time job! Actually, most days it does.
I still have doubts at times whether or not I am qualified to have this position, but I merely look into the sweet faces of my children and my fears are calmed a little knowing that God trusts me to take care of them! He hired me and I will do everything in my power not to disappoint or let Him down! I still carry the thought and belief, though, as the old saying goes, “It takes a village to raise a child!” So, Patrick and I can't go it alone and we know we don't need to even try. We know we have support! It's just some days I wish I had a big red “Easy” button (you know, the one Staples advertises they provide) to push to lighten the load a bit. Again, I mentally remind myself that nothing worthwhile in life comes easy, but I wouldn't turn down a day off here and there! ; ) Still, we purge ahead and make the most of the life we were given!
I will petition for a specific prayer request for the next couple of weeks. I pray that NO SNOW or ICE finds it's way to our neck of the woods. Living in east central Oklahoma, you think we'd be safe, but we had a good little snow storm about this time last year so it could happen! I just want to be able to travel back and forth to the clinic without constantly worrying about road conditions. I know the idea of a “white Christmas” from our children conjures up thoughts of beautiful picturesque views out our living room windows and winter wonderland songs coming to life, but it is one less thing I would have to worry about in a time full of justifiable worries! So, NO SNOW!!! ; )
I am going to try and accomplish a few things on my mental list of things to do today that have been slipping past me lately, like the ever elusive piles of laundry and the continuous clutter that keeps managing to build in areas through out the house. Someday, I keep telling myself...”Someday!” I will say that I am feeling better than I was last week, but I can't seem to shake this nagging cough. Still drinking lots of hot tea, popping cough drops into my mouth like popcorn and carrying around a crumpled up kleenex. It's manageable!
Everyone have a good middle of the week. I will take Sicily to the clinic Friday morning for another numbers check. Her white count has rebounded, finally, so the GCSF shots have been halted, but her hemoglobin and red blood cells haven't behaved as well, so we'll see what happens.
Sicily and I just returned home from the clinic. My acceptance and desire to be flexible is paying off...treatment plans have changed once again. But, like before, I am okay with it. It has been explained to me that the drug, Topotecan, has not shown promising results in diffused anaplastic Wilm's. Therefore we are not going to use it. Instead, we will go ahead with another round of ICE, starting on Monday, scan on January 4th, then, depending on the results of the scan, possibly move forward with Irenatecan...which is one of the drugs that came back on the molecular profiling report as having possible clinical benefits. It is a cousin drug to Topotecan and I know it was producing good results in another anaplastic patient.
Again, we will live day by day. I know I will probably experience the most emotions to date when Sicily is scanned on January 4th. We are also not going to consider a stem cell transplant anymore as an option. Again, when dealing with anaplastic cells, in balancing the level of toxicity with the desired results, it has proved less promising. I am starting to feel that if we can't beat down this beast with the drugs we are currently using and plan to use, then we are going to run out of options. This is the first time I've felt a small sense of fear about becoming a hopeless case down the road. I'm not scared, yet, but the thoughts are starting to move closer to the forefront of my mind.
I've read and heard about phase I, phase II and phase III trials and never really understood what they meant. Dr. Hum took the time to explain them to me so I could better understand. So, if I understood her correctly, right now, by using ICE, we are considered in a phase III...the toxicity levels of the drugs being used are known and they have data to show their potential benefits. In a phase II trial, some information is known about the effects and dangers of the drugs, but not everything. So if we continue with the ICE protocol and add the Irenatecan, we would be in a phase II study.
In a phase I, the patient is basically a guinea pig and may not benefit at all from the drugs being used. This is were the hope lies in trying to find something not normally used to treat a specific type of cancer. I conjure up a visualization of “grabbing at straws.” Some may pull out a long straw that allows them to continue to live a quality of life, while others who end up with the short stubby plastic tube become research data for patients in the future, meaning their chemo cocktail can be crossed off the list of “what does not work” in future patients with similar types of cancer.
In my limited understanding of biology and the make-up of the human body, I still have thoughts that since every human being's genetic make-up is different in little ways and big, that just because one type of drug did or did not work for one person, does not mean it may or may not work for another. That is just my gut notion and it has absolutely no scientific evidence to back it up. I guess that is also where I place the fact that I will continue to hold onto hope that we can find something somewhere to save our daughter's life! It is such a precious life to save!
I get goosebumps when I hear Sicily say her “I love yous”...she has her own way of saying them. One of her favorites is to say she loves you to “something” like the moon or the stars or the sun. Lately she has been saying, “I love you all the way to heaven, mommy!” I can't help but sometimes think and wonder is she knows something we do not. I try to push those thoughts out of my mind, but I still also allow them to comfort me.
Sicily still talks a lot about her friend, Esther, and that she is in heaven and that she is with Jesus. I don't really know if she comprehends what that means as just today when we were driving home from the clinic she talked about Esther, heaven and Jesus. She wanted to know if Esther was asleep and I told her that she most likely was awake up in heaven. Then she proceeded to explain that the last time we saw Esther she was asleep. At least in her little just turned four-year-old eyes, Esther looked like she was asleep as she lay in that pretty long box. I took a deep breathe and tried, in a simple matter of fact tone of voice, to clarify that the only way Esther was able to be in heaven with Jesus was because she died. She replied, “Esther died?” as if that was the first time she had heard it. I don't expect her to understand, but I continue to feel a sense of security that Sicily is aware of heaven and knows and accepts that is where Jesus (and her beloved Esther) live. And hopefully, someday, ALL of us will live there, as well. Some before others...some earlier than we hoped...but it will be the place we can all be reunited! In a nut shell, there lies the reason why I choose to have faith...there lies why I choose to believe...there lies how I live day to day knowing of the impending possibility of my daughter's mortality. There is a “happily ever after” if you believe!!! God's terms...not mine!!!
I will take Sicily to the hospital on Monday at 10:30 to be admitted for treatment. Luckily, we are expecting the company of two of Patrick's sisters from Kansas. Patrick and I have a Christmas dinner to attend and Corinthian has an art awards event both on Tuesday night. Aunt Valerie, who is Corinthian's Godmother, will accompany him to his ceremony while Aunt Bett will stay with Sicily in the hospital so Patrick and I can have an evening out. Our nephew, Taylor, will come hang out with Isabella and Elias at the house until Corinthian and Valerie make it home. After the dinner, I will return to the hospital and relieve Bett. I think we have all of our basis covered! ; )
Everyone have a wonderful weekend. We plan on enjoying ours! I'm ready to wrap presents by a warm fire. I have actually been able to do some Christmas shopping (thanks to the wonders of the internet) and need to get some wrapped presents under the tree. I love to wrap presents! For some reason it is therapeutic to me. So, wish me “Happy Wrapping!”
We are not inpatient, yet...hopefully by tomorrow. We had quite a weekend around our household.
Isabella became ill with an intestinal/stomach virus starting in the wee hours of Saturday morning. This was the first time for us to attempt to manage her diabetes through bouts of vomiting and diarrhea. I think we did pretty good. I just kept checking her blood sugar pretty often and had her try the best she could to drink plenty of fluids. When a diabetic gets sick their blood sugar can become elevated. It seems the opposite should be happening and her blood sugar would drop if she is losing the contents of her stomach, but that is not the case. Luckily, it looks like this was a twenty-four hour bug and she went to school today. But the nasty little virus wasn't done claiming victims.
Between six and seven o'clock last night, in the short span of one hour, Corinthian, Sicily and I became ill, too, and we had Patrick running ragged. Now he is home with a temperature. Sicily bounced back like nothing happened. The one person in the house with the least amount of immunities and she's be-bopping around feeling spunky (she is currently napping in her brother's room, thankfully). Corinthian is starting to feel a little better, as am I, but we both feel weak and worn out. Patrick called the ped/onc clinic this morning as I was scheduled to take Sicily in at 10:30 to be admitted for treatment, but they just said to come in tomorrow, so I will attempt to take her in at 10:00. Meanwhile, we are all going to try to rest and take it easy. Boy, I tell ya...when it rains in our lives, it pours! Pray that Elias escapes what we all just went through and avoids this bug!
I will try to update when we get settled in our hospital room tomorrow. Patrick's sisters are still planning to come from Kansas to help us out for the next two days. I'm spraying everything down with Lysol!
I know I need not apologize for not journaling, but it makes me feel better if I do, so please forgive me for being absent. There is only one reason I find justifiable for not sitting down and pecking away at the keyboard and that is because I truly have not had an opportunity! I'm running pretty ragged and I am pretty tired, but despite that I am not beaten down. Life is marching on and we are still trying to lead our little marching band through the parade!
I will try to keep this brief as I just ran home to shower and wait for the older kids to get home from school and we will all head back to the hospital where aunts Bett and Valerie are entertaining a solemn Sicily.
We were admitted into room #326 around 11:30 ish Tuesday morning. Sicily cried before we headed to the clinic yesterday as I could visibly see she is becoming more and more apprehensive about her treatment plan after having an issue with one of the drugs last time. I feel the apprehension, too, but am determined to hurt this cancer before it can hurt our daughter anymore!
Bett and Val made it to the hospital a little after lunch and Sicily was glad they were there. I stayed longer than I thought I would as I had planned out in my head to come home and make good use of my independent time. But it is never easy to leave Sicily, even when I know she is in the best of hands. I wanted to go over everything with Bett, who was planning on staying until late evening to allow Patrick and I to attend a dinner.
At first I thought Sicily would not be getting the neurological side affect inducing drug, Ifosfamide, until today, but I was incorrect. Fortunately, however, the timing of the infusion was not going to be until much later in the evening so I felt okay leaving Bett there while Sicily received it. My mind gets cloudy and confused from time to time and I still struggle to keep all the facts straight, but I was reminded that Sicily did not begin to show signs of the effects until after her second dose. The plan to pre and post treat with the Methylene blue medicine to counter affect the “effects” was still in the plan, so that helped ease my worry, as well. I left the hospital feeling comfortable.
I ran Valerie home to wait for the older kids and ran and a couple of errands. My cell phone rang at exactly 4:30. I heard Valerie's voice inform me that Elias had not come home yet from school and the school bus had not driven by our house yet, as is does everyday no later than 4:10. I calmly told her and mentally convinced myself that the bus had probably broken down, but the nagging feeling of worry started to build in the gut of my stomach. As we were talking, Valerie said she could see our friend and neighbor across the street...Elias' best buddies mom, on the phone as she looked worryingly down the street for where the bus should be approaching, but wasn't.
Val had to hang up rather quickly as Stowie the kitty ran outside and into the bushes in front of our house. Corinthian later reported he retrieved her by “pulling her tail” out of the bushes. Remember, that's why cat's have tails...to rescue them from perilous situations like thorny holly bushes and dark, cold attics!!! ; ) (You'd have to read the story of Stowie in the attic last year in early December. Silly cat likes to stress us out...AS IF!)
As I sat in an Arby's drive thru nine miles from our house, that dreaded worry feeling reached the top of my mind and it went “there”...to that place it shouldn't and I started thinking those crazy thoughts about what if the bus Elias was a passenger on had an accident? Just then, to make the feeling more concrete, an ambulance with sirens blaring raced past in the direction of the hospital. I grabbed my phone and called home to hear Corinthian's voice answer. In an outwardly calm and controlled, but internally frantic utterance, I asked if Elias had made it home yet. Thankfully, he had. Apparently the bus had broken down in the neighborhood just east of ours with five or six kids still left on it. A mother of two of those kids who live down the road drove over and brought Elias home. The kicker for me was that I had sent him out the door that morning with frustration on my face and anger in my words. He told me at the last minute, literally, that he had homework the night before that he could not locate and it was due to him talking in class. I know a large portion of my worry was built from the guilt I felt sending him off to school while I was angry with him. I learned a little lesson. I need to work harder at checking his backpack in the evening and asking more questions of him...but more importantly, I can't send him off to school that way again! All's well that ends well, right?
Patrick and I enjoyed our dinner. I honestly needed a few more hours just to meet and talk to some wonderful people who have supported us in many, many ways through out our journey, but I felt blessed to at least get to put smiling faces with the names that have sent so much care and compassion our way. I had an overwhelming sense of peace leaving last night knowing these people are there...spread out through east central Oklahoma and that they truly have our back. I just wanted to thank the Board of Directors and the employees of East Central Oklahoma Farm Credit for EVERYTHING. There is no doubt in my mind that Patrick and I, along with our kids, are where we are supposed to be...employer, church, schools, neighbors and more...God definitely took care of us.
Valerie was able to escorted Corinthian to his event and cousin Taylor helped Isabella and Elias with their homework, as well. We felt like we had accomplished something major by pulling Tuesday evening off. We couldn't have even fathomed of doing it without the tremendous amount of support we received! The words “thank you” can't begin to express our gratitude. Sometimes words just don't seem like enough, but sometimes that's all we have...”So, thank you!!!”
Well, so much for being brief with this journal entry. I should just learn not to ever even attempt such a feat, right? Sicily slept fair during the night. Even with the pre and post treatment she had some break thru tremors, but they were slight. She was still able to be independently ambulatory to get up a couple of times to use the bathroom, as I assisted her. She refuses help many times, even when it is obvious that she needs it, but I support her sovereign attitude. What else can I do...she is Sicily! ; )
I will be on watch again tonight and will hopefully be mentally and emotionally prepared to handle another dose of Ifosfamide for Sicily. She really didn't start having any issues last time until her second of three doses. Dr. Hum is once again going to cut out dose number three, just to be safe. As I sit and type, Sicily is receiving blood transfusion number six...eight total when the platelet transfusions are counted. I just sat on the floor in the living room and read over the poster that was signed by so many at the blood drive held in her honor in Wellington the Friday after Thanksgiving. Bett and Valerie just delivered it last night and this afternoon was the first time I was able to read over it and all the cards that were signed. I thought how appropriate it was for me to be doing that as Sicily was receiving blood once again at that very moment. Again, thanks to all who donated or supported...when I look at that little plastic bag full of dark red liquid flowing through the tube and into my daughter's body, I tear up just thinking of the simple but incredibly important gift that it is!!! Wow!
Okay, I've got to close out this therapy session for now, but I will return soon, I promise! Please keep praying and chewing and chewing and praying...we hear and feel it! I will pray for no sore jaws!
I'm not sure how I am still functioning as well as I am after having a repeat night like the one we had last inpatient treatment. The Methylene blue wasn't able to stave off the neurological side effects of the Ifosfamide. Sicily repeated the same symptoms, but at least this time I was aware and very much on guard to handle what became reality again. It was rough. She does not understand, nor do we, why this is happening to her. It's scary, but Patrick and I continue to hold tight to the thought that this is what we need to do to eradicate the cancer.
We have a friend in the hospital who happened to be on call last night and it helps having him there to bounce ideas off of and help us when we feel in crisis. I told him that Patrick and I try to imagine that if this drug is causing such an effect on Sicily, that it hopefully is shaking up the cancer, as well. But he responded that they don't want to see this...what Sicily is experiencing is too much and we have to find a way to lesson the negative consequences of the Ifosfamide all the while hoping to still reap its benefits. It's a balancing act. One in which we will weigh heavily depending on the results of the scans scheduled for Jan. 4th.
We were able to talk with Dr. Hum this morning and she is keeping a close eye on Sicily. She is not ready to toss the Ifosfamide, yet, as it could prove to be helping to achieve our desired results, but we will definitely look at tweaking the dosage and timing if we decide to continue after the scan. Here, once again, is evidence in the need for us to take things one day at a time.
The date of January 4th is burned into my brain and it can't get here quick enough and at the same time I dread its approach. So, we handle what is happening in the here and now, and let that day have its turn when its turn arrives. There is much to celebrate and be happy about in the next couple of weeks. I'm ready for the kids to be out of school for Christmas break and for us to experience some extremely thick family bonding time! I'm ready for the magic and warmth that Christmas provides for my heart.
I confessed to Patrick the other day that I don't “feel” Christmas right now. I hate that! I close my eyes and search for that feeling I find every year at this time and it's not there. Maybe once we get Sicily home and she recovers from this episode I will find my Christmas. I guess my Christmas feeling has a lot to do with just having my husband and kiddos all home under the same roof and spending quality time together. I'm not unhappy at all. I'm really the opposite...I still feel like smiling and laughing and enjoying our life. I just want and need that Christmas feeling!
I'm sure one of these days perhaps even sooner I will crash emotionally again. If I feel the need to cry, I still open the dam and let the water flow. This morning it was very emotional having Valerie and Bett there to witness Sicily in this condition. I try very hard to protect her dignity even though a four year old has very little knowledge of what that may be, but it's hard to have to handle your thirty-nine pound four year old daughter like an infant. That is how I can describe Sicily when she is suffering from this side effect.
I have her in pull-ups, something she did away with long ago, but we are in need of using them right now. After carrying her to the bathroom when we were able to catch her before the pull-up practically exploded, I would carefully lay her on the kid sized hospital bed all the while trying to support her head as it would wobble back and forth. I would put on her pull up with no assistance from her legs as she struggled to know how to help me. She whimpers and moans in between full blown sorrowful cries. At one point as I was right by her she hysterically cried over and over with her eyes squeezed tightly shut for mommy...and I was right there. I couldn't get any closer to her if I tried.
I hated for Bett and Val to have to endure that pain with me, but at the same time, having them there helped me feel stronger! No one should ever have to observe a child in this condition. It is beyond heartbreaking. We asked for Sicily to get a dose of Benadryl through her IV as it helped her relax and sleep a long time yesterday when she was getting her transfusion. Before I left her room to head home after lunch, she was laying on daddy's chest peacefully sawing logs in the recliner. I hope she can stay that way for a long time today so she can sleep off some of the remaining chemo. She is still scheduled to get a dose of Etoposide today, but Dr. Hum wanted to evaluate her before making that call. Etoposide has never caused Sicily any problems, so personally I think it would be okay...but I will let Dr. Hum make that call!
Please pray for Sicily to bounce back from this very soon and that she stays well and fever free for the next couple of weeks. Pray for our other three children as they maneuver their way through our life circumstances. Elias brought both Patrick and I to tears, again, yesterday with his words. I was home when he barreled off the bus and he excitedly ran in and proceeded to empty out his backpack. Instead of carefully unhooking the clasp and reaching in to remove the contents, he holds the messenger bag upside down and shakes it until gravity releases and scatters papers all over the floor. He bends down and shuffles through the mess until he locates his articles of interest and proudly hands them to me. In my hands I hold two fronts of Christmas cards that have been separated from their back halves and I turn them over to find notes written in his cute second grade hand writing.
The first one I read went straight to my heart, which notified my brain that tears would soon be falling. “from: Elias To: mom and dad...I love you mom and dad. You deserve this you take care of me and feed me dress me and Love me and every thing else. and thank you for buying me toys. and thank you for my bed and every thing else.” The second card reads, “Happy new year mom and dad I Love you you are the best I can't wait to see your face on chistmas day I got you booth your presnts that I got from the pugrin (Penguin) shop. They are great I hope you Love them.” You can bet we will. He has already tried on several occasions to give us our presents early as he is so excited. His elementary school PTA set up a shop for the kids to purchase gifts that they call the Penguin Shop. I will treasure whatever his little heart picked out for me forever! Patrick told me to laminate these two cards and the next time I feel overly frustrated with his behavior, pull them out and remember how special this little guy is!
Isabella has been having some issues with her blood sugar being in the low range ever since she was sick last weekend. We have an appointment next Tuesday at the pediatric diabetic clinic so hopefully we can resolve the matter. I know she is in need of a break from school. I think she is starting to be aware of her stress levels and even voiced to her aunts that no one understands that her little sister has cancer and that she has diabetes and I think she is feeling overwhelmed. She still won't ask for much help from her teachers with school work and just brings it home assuming mom or dad will be able to help her. There are times we won't be able to. She is still somewhat timid and quite in her school surroundings, and I'm at a loss of how to help her with that. Maybe after the break, I will have a chance to contact some of her teachers. I know they would be more than willing to help. I just haven't felt like I have many moments to spare to handle more than what is going on during each day!
Speaking of Isabella, she and Corinthian just came home from school so I better go get my hugs!
This family is in my prayers daily. I cannot imagine the hurt in thier hearts watching this precious child go thru this horrible ordeal. Cancer sucks!! (sorry for the language, but thats all I can think to say about it at this moment) And the sad thing is, this is just one child we know of and love, the childrens hospitals are full. Please pray for a cure!!!!
You only live once, but if you do it right, once is enough! Chemo Angel
The phone rang at 6:30 this morning and I looked to see on the caller ID that it was from St. Francis Hospital. I picked up the receiver expecting to hear Patrick's voice, but instead I heard, “Hi mommy...I stayed up allllll night!” I smiled. My day is going to be good! Patrick got on the phone and said, literally, she did stay awake all night. The TV was never turned off and she sat in bed and played with an old cell phone that has no service but still holds a charge. He said she constantly played with the ring tones and changed them...basically making it almost impossible for him to drift off. We will have our work cut out for us when she comes home as we try to acclimate her back into a diurnal schedule.
Right now she and the kitty could spend the night entertaining each other, as Stowie usually feels the friskiest at night, being the nocturnal creature she is. We can handle this situation, though. Once Sicily gets home from the hospital, and the other kids home from school today, all we will have is time. We will hopefully have nothing but time for awhile. I like the thought of that. Sure, things will still be hectic and maybe even a little hustle and bustle with Christmas fast approaching, but as long as she stays fever free and feeling okay and doesn't have to be readmitted to the hospital between now and my favorite holiday, things will be wonderful! I won't let my mind fast forward to Jan. 4th. I will try and enjoy each day as it comes and only that day!
Sometimes it's hard to do that, especially for a planning minded person such as myself. But all I usually need to do to halt the fears and worries that attempt to take root in my mind is to think of how far we've already come. We're hiking up one of the world's biggest mountains. We've already endured perilous situations and still found the strength through our faith in God to push forward.
At times we've looked back and it scares us how high we've had to climb and we also look up and see that we can't even begin to see the top, yet, but we know it is there. Everything has a top and a bottom...a beginning and an end...an alpha and an omega. When you're somewhere in the middle and have been for some time, it can be hard to always have the courage to continue the clime, even when you know you really have no other choice. But what makes the climb bearable, no, more like enjoyable, is when you get looking back and you quite looking up and instead you look around and realize you are climbing that mountain with your family, your friends, and even perfect strangers that want to be there with you! That's when I realize I can climb forever if I need to. That's when I know that if I slip, there will always, and I mean always be someone near to catch me, help me up, patch my wounds if needed, pat me on the back and say, “Let's continue.” That is how I can describe the reason Patrick and I are able to do all this. People. Hundreds of special people! From all over the world...from different walks of life...with different types of faith...but with one thing in common... COMPASSION!
I wish I could describe into words how humbled we are. The word humble can mean “meek” or “submissive” but I relate more to the definition of “unpretentious.” I like to share stories sometimes of what others have done for us, not to boast or brag, but to show gratitude and appreciation when I struggle getting to a pen, some paper and a stamp to formally thank them.
For example, yesterday, Elias bounces off the bus, like he pretty much does every day with a white plastic bag clutched in his hand that had something in it. Corinthian has just recently started going outside our front door to watch Elias get off the bus. I asked him why he was doing that and he replied, “I just like to watch him.” It is sometimes a humorous site...that kid is all boy and usually in his own world. Anyway, I asked Elias what he had in his sack, thinking maybe it was something he received from the book exchange they had in his class. He pulled out a big green stocking that was full to the rim with stuff and said that the Santa Claus who came to his school, wanted to give this to Sicily. It is hard not to tear up and try to swallow the knot that almost always instantly forms in my throat when something like this happens. How do you say thank you to someone like that? How do you let them know their thoughtfulness helped you get through a tough day? The only thing I have ever been able to do is thank God for that person...whomever he or she may be...at least He knows! And sometimes He is the only person who needs to...for He is the reason so many people do things such as this! I think I could actually right a whole book on human compassion! I have enough stories to fill the pages and someday I may actually take on that adventure. Another good reason for me to share these stories...so they are already documented and would just need to be compiled some day.
Another quick story and then I have to go wake up Elias for school. The phone rang about a quarter to four yesterday afternoon and I did not recognize the number on the caller ID and there was no name. I answered it and heard a sweet, somewhat familiar sounding voice on the other end ask me if this was Sicily's home. I said yes, and the voice said she had a delivery from Sicily's preschool. I knew today was their last day before the holiday break and that they had a program scheduled for the morning. As I sat holding Sicily in the recliner at the hospital, I actually looked at the clock around 10:15 and thought to myself, “Her friends at school are probably preparing for their Christmas program...what I wouldn't give to see them!” So the door bell rings at our front door, and as I turn the handle and pull it open, imagine my surprise when I see Sicily's beloved teacher, Miss Sylvia, and her husband standing there with their arms full of gifts. She was just as surprised, too, as I think she was expecting to be greeted by one of Sicily's aunts and not me. Again, we were showered with generosity and kindness that knows no bounds! I can honestly say I love these people with all my heart and in a crisis situation, they would probably be some of the first people I'd call! Without having close family very near us except one sweet nephew and his wife, God has provided us with family in other forms. He allows provides!
Okay, have to get the cute little eight year old up. Nice thing about this morning is that he gets to wear his pj's to school as they are having a “Polar Express” day and will be watching the movie and drinking hot cocoa. He shouldn't be too hard to arouse out of bed. I'd like to go to school today, too! ; )
I'll update when the princess gets to come home to her castle and awaiting kitty. Everyone have a wonderful Friday!
I laugh when Kerry writes something funny the kids do or say, but more often than not I have tears running down my face, and I am so full of awe at thier strength and faith and they must have the faith of 100 people, because I think I would have fallen apart a long time ago, but then again maybe not, because I know in my heart God can sustain us.
Thanks Caterina sending you hugs and prayers too, because I know you got to meet Sicily, so you feel deeply for her.
You only live once, but if you do it right, once is enough! Chemo Angel
I laugh when Kerry writes something funny the kids do or say, but more often than not I have tears running down my face, and I am so full of awe at thier strength and faith and they must have the faith of 100 people, because I think I would have fallen apart a long time ago, but then again maybe not, because I know in my heart God can sustain us.
Thanks Caterina sending you hugs and prayers too, because I know you got to meet Sicily, so you feel deeply for her.
Second post for today...Sicily is home. She was happy, hungry and a little stinky! She first loved on her kitty for awhile, then took a swim in the bathtub to "wash off the hospital smell," as she calls it, and finally she attempted to eat a little Princess spaghetti O's but her tiredness overcame her and she laid down on the couch and fell asleep. Stowie laid on the back of the couch for a quick catnap to watch over her. She is not a very affectionate kitty accept when she wants food or her fur brushed, but she has a way of letting us know she loves us. Usually at this time of day she is asleep up stairs on one of the boys' beds, but today she needed to be near her Sicily.
I am full of happiness right now. In one hour the whole family will be under the same roof again and I can already sense "my Christmas feeling" coming on! ; ) It feels good! We are expecting a little company before the big day and after, as well, with Bett and Grandma Zeka coming a couple of days before and my parents are coming a couple of days after. The kids are very excited!!!
With company coming it helps to kick my motivation into gear and I'm ready to conquer the clutter...at least the best I can. There still has to be plenty of time to roast marshmallows over the fire, drink hot chocolate, decorate sugar cookies and make snowflakes out of coffee filters. Most of my "de-cluttering" will come in the form of just moving things around a little! That way I can hopefully accomplish both goals without knocking myself out!
The day is not over and I still haven't found my Christmas yet. Maybe it just wasn't meant to be this year. We had a nice couple of days but even though we kept things low key, Sicily's body hasn't bounced back from her last round of chemo. She started running a temp of 102 around 6:45 so she and Patrick are getting checked into the hospital after braving the still treacherous roads. My heart is broken. I want my daughter and husband home with the rest of us. She was very sad when I told her she had to go, but quickly became stoic and just nodded her head when I told her I loved her and would see her in the morning, as I carried her out into the garage to be safely buckled into her car seat.
Her counts as of yesterday morning were zero. Her white blood count was .3 when it should be above 4.5. Everything else was low and will be dropping even more as her body will be trying to boost her white cells with the GCSF shots I give her nightly. A fever, in this case, is an instant forty-eight hour pass to the hospital. But, it has to be done for her protection. I just wish we hadn't been dumped with seven inches of snow last night. Patrick just called to say they made it there, but it was not easy. I'll try to update more tomorrow. Nothing ever happens too fast on the weekends, especially after a holiday.
I guess you could say I'm having a "Blue Christmas!" I am so sad!
The phone rang at around nine o'clock this morning and I heard a sweet little voice say, "Mommy, when you come to the hospital, will you bring a BBQ sandwich (Arby's) and pizza?" My heart did a flip! ; ) "Of course I will," I told her! She said she slept great. Last night Patrick said they discovered her right ear was red and inflamed with an infection...most likely causing her fever. She hasn't had an elevated temp since 10:00pm. He also said they went ahead and gave her a blood transfusion last night...number seven, I think. I'm starting to lose track. Thankfully I have it documented in her "beads of courage" strands!
Even though we think the cause of the fever has been pinpointed, it depends on who the doctor on call is this weekend whether or not Patrick can twist their arm into letting us "spring" Sicily out. Even though she is under the care of her fav nurse, she feels better at home and we are pretty good care givers. We've done alright so far. The magic number of forty-eight hours derives from how long certain cultures take to grow and determine if she has certain bacteria that would require more powerful medications to treat. She is already on an antibiotic now for her ear infection, and we can take that over at home. Pray for the mind and heart of the decision makers to let Sicily come home. If something shows up from the cultures, we just bring her back! Her new baby doll and pink polka dotted stroller are sitting and patiently waiting by the Christmas tree for her return.
Last night, as I was saying good night to the older three and explaining to them about Sicily's ear and hopefully that is the explanation for her sudden fever, Elias, who received his dream Christmas present, said he'd rather have Sicily back home than have that gift. There's my Christmas!!! I found it!!! Elias has the knack of saying the right thing at the right time without even knowing he is doing it. He also does the opposite from time to time, as well. He is just a purely innocent little eight year old boy that speaks from his mind, heart and soul...whatever it may be.
I have to share a little story that occurred on Christmas eve that affected me and emptied out my "box of hope"...but only temporarily. There is an old Czech tradition that Patrick's grandparents used to celebrate at Christmas and we try to carry it on. It involves an apple, candy and nuts with each one being symbolic in a certain way. Each person takes their turn cracking a raw nut to for tell their health for the year to come. If the meat of the nut is good, the person will have good health, if the opposite is discovered, the person's health will be affected in some way.
Before we did this little tradition, we had been discussing how one year the only person to get a bad nut was one of our nieces who ended up having a bad knee injury. Now, I am not a superstitious minded person, but sometimes things still implant themselves in my mind, and their symbolism still means something to me. To make a long story short, Sicily cracked a bad nut. I wanted to throw the whole bowl out the window. It upset me and made me lose site of my determination to hold onto hope! Again, I know it really does not mean that she is doomed to have bad health, but it did not help detour the heavy weight I feel in my heart!
I am doing better today. Just hearing Sicily's voice sounding chipper and her having the desire to eat does tremendous good. The other three kids are doing good, as well, and are such a great comfort to me! I need to run pack a bag incase they won't let Sicily come home so I can trade with Patrick, who isn't feeling very good himself. I will update later if anything changes.
Thank you all for your constant prayers and support. They are my fuel and the fire that keeps me going!
Friday, January 1, 2010 8:52 PM, CST Hello all and Happy 2010!
I'm sorry for such a long absence but we have been staying busy with company. I took Sicily to the clinic on Tuesday for a CBC and she ended up needing platelets again. Elias wanted to go with us but he was great and did not complain once about the four hours away from his new toys! It helped that I took him to the gift shop and let him buy a small five dollar toy with some of his Christmas money. It was also good for him to see what takes place and how well Sicily handles everything. He told her, "You sure are brave, Sicily," after he observed the needle being pushed into her port.
We had a return appointment again on Thursday and Isabella decided to tag along that day. Sicily's numbers were on the rise so we finally were able to stop her GCSF shots after fourteen days. Her ear infection had cleared up, as well.
Monday is fast approaching but I have been successful at keeping it off my plate of worries with my parents visiting along with one of my sister's and her family. We've had a nice time, but more importantly, the kids have had a blast. Sicily is full of her usual spunk and energy and has loved having a house full! I'm sort of ready and then again not really ready for Monday to arrive and the older three kids back into the routine of school.
I've definitely enjoyed the post Christmas activities and wish we had just a little more time. This year really stressed me out and a lot of that was my own doing...something I still need to work on. Like I've said time and time again, if I could just get my house in order our lives would simplify somewhat. I never make New Year's resolutions because they usually hang over me and I don't accomplish what I verbally said I would do, but I am going to work extra hard at trying to get things organized and in their place around here.
I still don't know what the future holds past next Monday, but we are getting pretty good at this day to day thing. There are times I wish we could make some long term plans, but it's just better we don't as to not have to be disappointed or crushed if we can't fulfill them. I just pray with all my heart that the results of the CT scan, which will include Sicily's chest and abdomen, show that these drugs are working and her cancer is on it's way to being defeated! She misses school so much. She still talks about not being able to wait to get to go back. I hope that day comes soon.
Well, I need to run. Isabella needs her twenty four hour insulin shot and I need to start hunting down little bodies to get pajamas on!
Love to you all and here's to an awesome new year!!! And I have come to the conclusion that many of you are so right about the "nut" thing...Sicily's health is not great right now and it may take the rest of this year to improve it, but improve it will and next year her nut will be the best one of all!!! ; )
No news to report yet as we were told we most likely won't hear anything until tomorrow morning. There is a small chance we could find out late this afternoon, but it would not be a definitive call, only preliminary. I have done very well so far in dealing with the anxiety (“scanxiety”) that accompanies days like today...didn't even feel it in the days prior, but that most likely has to do with the fact that we were busy and preoccupied. A good thing to be before such an event. Sometimes we have control over the things that cause us to stress, but most times we don't, so it's best to let go of the worrying. Easier said than done, but I have to try and this time it worked.
There is nothing we would have done differently and there is nothing we can do at this moment in the here and now that would or will change the results of these scans. I have put my faith and abounding trust in God. If it be His will, then we will hear what we hope to hear. If not, we will continue to look for other ways to treat Sicily to give her the chance at life she deserves.
Miss Sicily is full of her usual spunk and energy...just happy to “Be!” Her appetite has returned and we love to see her this way. Last night at dinner she had seconds. She usually doesn't finish her firsts! She was a radiology tech's dream patient this morning during her scans, which is par for her. She actually likes the CT machine. It must serve as a carnival ride of some sort for her...the table she lays on moves up and down and back and forth, and the inside of the machine spins around her all the while. As an adult it scares and intimidates me, but not the fearless one! She also doesn't mind drinking the radioactive contrast needed to scan her abdomen. I guess I might drink it, too, if I were NPO all morning!
I feel a sense of peace and calm right now. Hopefully it's not the calm before the storm. I'm leaning more to it being the calm after the mental, emotional and physical rush of the holidays. This year wiped me out emotionally, I think, and for reasons that are not apparent to me! In forty years of life, this is the first time I feel a feeling of relief that they are over. I still have yet to send out my Christmas cards, but I also still plan on doing them. If I would have had any foresight this year I would have ordered “Happy New Year's” cards instead! ; )
We were able to make it to church yesterday morning for the first time in a long time as a complete family. Sicily's numbers were high enough on Thursday that we felt comfortable taking her. We usually sit in the back somewhere...not exactly by choice but because by the time we finally arrive that is the only area left with enough room for the six of us to squeeze in together.
Sicily was on the tired side and preferred for me to hold her most of the service. She kept one of her knitted hats on for awhile, but as she laid her head on my shoulder it started to slip off so I removed it exposing her little bald head. Even though we are used to her appearance, I have to keep in mind that others around us may not be. It's something hard to see, despite her still looking absolutely beautiful, but it attracts the eyes of strangers whose hearts, I know, must ache for what they ponder she has had to go through. Many know, even though they don't know us personally.
Sicily's name has been read faithfully during petitions for prayers for the past year and a half during mass. Soon after we heard her name for the unknownth time, a lady sitting near me leaned back and asked if this was Sicily. I said it was and she introduced herself. Her name is one that is familiar to me through the church and she told Sicily that she had cancer at one time, too. She was very sweet and for some reason I needed someone to acknowledge Sicily's presence that morning...one of those strange feelings that usually go unexplained. We usually see someone familiar on Sunday mornings, but we attended a later service than what we usually do.
We were then instructed to turn to a page in the hymnal as I heard the familiar tune of “What Child Is This” beginning to play on the organ...one of my very favorite Christmas songs. Again, for reasons unknown I felt tears burning in my eyes and experienced their cold dampness as they streamed down my checks. My nose began to run and I was without any kleenex in my purse so I had to continue to sniffle, bringing unwanted attention to myself from those around me. Church does that to me sometimes. Holding my beautiful bald cancer fighting daughter during church does that to me, a lot! Certain music brings on such emotions and I just go with the flow...the flow of leaky eyes! I guess even though I did not perceive myself as giving into the stress and anxiety of Sicily's upcoming scans, I was unconsciously feeling the dread and had been for the past two weeks during my favorite holiday. It felt good to release a little of that built up weight yesterday morning as I once again turned my cares and troubles over to God. I gave it to Him...I handed it over to the only One who can get me through this! Therefore...I am!
I will jump on here as soon as I hear anything, which still may be awhile. If the phone doesn't ring by lunch time tomorrow I will politely call and check in. This could be agony if I let it...but I won't...and neither should any of you. You are all doing everything you can to help us by praying and lifting us up! That is all we can ask...and we will continue to ask!
Okay, let me see how many of you I can confuse, as I was there just a minute ago but I think we finally have this little dilemma figured out now. I still haven't heard from Dr. Hum yet concerning the results but Patrick did speak with our brother-in-law, John, who understands the family side of this waiting game but also has the means as a pediatrician to have the CT results faxed to his office in OKC.
We, at this point, are not declaring victory over the cancer in Sicily's abdomen yet because our hospital here does not have a copy of the most recent scan, the baseline post surgery, of her kidney/liver area due to the fact that the baseline was done in OKC on November 10th. The radiologist could only compare yesterdays abdominal scan to the one from October 9th when the recurrence was discovered. Since surgery was performed in between the two scans done here, we can't rely on the results and will need a copy of the other scan from OKC before we can determine how well the treatment has worked. We do know that there is still cancer remaining behind Sicily's liver near the vena cava and that is what we are waiting to find out how much, if any, it has shrunk. Does any of that make sense?
We did, however, have the baseline for her chest done here and the comparison from the November 18th scan says the lungs are CLEAR. “That”, we will accept as a victory!!! I'm still inhaling and exhaling slowly until I am told the percentage of change in the tumor still in her tummy. It is safe to say it has not grown any, which is definitely a good sign!
I have no idea what the next step in treatment will be as it needs to be determined based on the results we are having to wait a little longer for. I did not expect to hear that the cancer would be completely gone, and on the same note I did not expect to hear that the cancer had grown. I really tried not to “expect” anything too good or too bad. I'm maintaining my stance of remaining in the middle of the road... whether we find ourselves driving through the mountains or the valleys of our life! I feel safe in this mode...my safe mode! It works to help maintain the balance I so often strive for but many times can't quite acquire!
So, in a nut shell, we know a little but still crave a final “say” and will continue to wait as patiently as we can...prayers are being answered as I am still able to function and am not feeling my heart palpitate too much! ; ) It helps that Sicily is so healthy acting and feeling, other than the junk still trying to hold onto a spot in her body. She smiles and giggles and plays. I'm very seriously considering taking her to school the next two days to let her live it up a bit before we continue with the next phase of treatment. Even though my head wants to keep her in the confines of our house to protect her, my heart knows to let her enjoy life and grab at the chances to fill it with experiences that will help her get through the tough times yet to come! I haven't talked myself into it yet, but I am leaning towards it.
I don't know if I can handle being home without her here with me for four and a half hours. She is my constant companion, and even though we can wear on each others nerves, the house is just too quiet when she's not here chasing the cat around with a stethoscope or singing out of tune at the top of her lungs any song that comes to mind. She's a hoot, but I'm willing to make the sacrifice of facing loneliness if she is able to enjoy a couple of days of “normal life” by getting to go to school!
I'd better sign off as the princess is snoozing on the couch and I can go up and down the stairs briefly without having to tell her my every move! ; ) I'll report if or when we get anymore news. Thanks for the abundance of prayers. Living proof...that's what we are...living proof! By the way, Isabella chose the new background for this site yesterday. I think she made a good choice!