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As I type Sicily is ready to head out the door and be merrily on her way to school. After she woke up from her snooze on the couch yesterday afternoon, in an attempt to thwart the bad mood that usually follows such an event, I knelt down to tell her that I was going to send her to school the next two days. In two seconds she jumped up and ran looking for Corinthian to tell him. As soon as Patrick came home from work, she hopped and skipped to him excitedly sharing the good news. I looked at him and asked how could I not take her to school when it means this much to her. He completely agreed. So, we will shortly be off traveling down the road we have not been able to travel in awhile...the path to preschool.
I will make the most of my time alone, coming home to talk to the cat and do a little de-cluttering. I already have lunch plans for Thursday with a dear friend...the one who makes me laugh through my tears and cry through my laughter...should be a good time! I wasn't sure we were going to be able to get Sicily to calm down enough for bed last night. She was full of whatever she gets full of! She acts like we are on our way to the greatest place on earth...and in her world, it is! So I am thanking God for letting these two days happen. Two days of normalcy for a little girl who lives in a complicated world. Two days to recharge her spirit, not that it's lacking at the moment, but this opportunity will hopefully give her that extra drive to get through the next leg of her journey, which may start as early as next Monday. She is scheduled to go inpatient even though we are not sure yet what the next move will be. So, that's what these two days mean and will do for her...and me!
By the time evening rolled around yesterday I was tired and wishing I could crawl into bed early and let the day quietly slip into its bygone place in the past, but we found out Sunday evening via a Broken Arrow school cast recorded phone call that a meeting was scheduled Tuesday evening for the parents of students preparing to enter the ninth grade next year. It would be held at the South Intermediate High School from 6:30 to 9:00. Broken Arrow public schools has the largest public school system in the state of Oklahoma with over 16,000 students (graduating classes run between 1,000 to 1,200...scary!). I just heard on the news this morning we are now the fourth largest and fastest growing city in Oklahoma. Guess that proves we chose a great place to live a year and a half ago, huh?
I am already having anxiety over our oldest preparing to enroll for “High School,” so I knew in my heart it was necessary for Corinthian and I to attend the informative meeting. I dragged my feet a little and played on Patrick's guilt a bit to see if he would offer to go in my place, but when it came down to it, I knew I needed to be the parent to go. So Corinthian and I went. He thanked me for taking him before we even reached the school, cementing my own guilt deep in my gut. It turned out to be great. I left feeling excited and confident in his next educational step. I have to laugh because the session we decided to attend first was about the various clubs and organizations offered at the school. Other high school students, along with some faculty, shared their experiences and knowledge about the clubs and by the time we left “I” was ready to enroll and sign up to join about half a dozen of them. The girls were hilarious...the word “like” was used over two hundred times and every club was “just LIKE so fun!” Corinthian and I couldn't help but exchange smiling glances every time a club was described in that manner...”Like, you just have to join because, like, it is, like, totally fun!” I started having flash backs to the valley girl era of my time. The eighties still rule in my book...”Like, totally!” ; ) Corinthian already has a desire to join three or four clubs, if his schedule will allow after enrolling in two or three pre-advanced placement classes.
One club is called “Mock Trial,” which is just that...a competitive club about law and the court system. They actually compete against other schools over a realistic court case. Then there's the art club and student council and a writers guild...like I said, where can I sign up? I have no shame in admitting that I will be living vicariously through my oldest son as he travels through his high school years. He's a fun kid and a really good kid! I am glad I was able to go with him last night. It was a good experience for the both of us!
Well, pee-wee is chomping at the bit so I better find some way to pass the time for her until we can hit the road. What I wouldn't give to pull up a chair and sit at a desk in her classroom along with her. She wouldn't go for that...it's her time and her place and mommy has no business being there. So Stowie is going to have to put up with me talking to her for a few hours. She already looks at me with disconcerting eyes so today won't be any different than any other. Just a bit on the quieter side! ; )
Everyone have a great day! If any news pops up you can rest assured I will jump on here!
Second entry for today...some days you get more than you want and others you are left with nothing. I can't be called the most consistent person, can I?
I just wanted to jump on here very quickly to report how Sicily's day went. I don't think it can be summed up in one word, but it was “Fantastic!”
Since the weather is so cold and the kids can't go outside to play on the playground, they decided to have an all school parade with Miss Sicily as the line leader. You can bet that made her feel very special. Driving home she sucked down a pixie stick which prompted me to ask her if she was thirsty. Her reply was, “No, I had juice pouches at school with my snacks. I ate M & M's and dog food and...” I interrupted, “Dog food? Do you mean puppy chow?” She said, “Yah, but I like to call it dog food.” No, her preschool does not feed the kiddos dog food. For those who may not know, there is a snack made out of rice or corn chex, peanut butter, chocolate and powdered sugar that is aptly called “puppy chow.” I think she liked the “dog food!” She definitely enjoyed her day.
She is on the phone with Grandma Parker right now giving her all the details. The first thing she did after we walked in the door was change her clothes to a pair of jeans and a Hello Kitty t-shirt, then grabbed her stethoscope and headed upstairs to check on kitty cat. She rarely misses a beat. Now I just pray the snow we are forecast to get does not accumulate enough to cancel school tomorrow. It's out of our hands so I won't worry about it.
I will close for now. I need to run Elias to the ENT doctor's office when he gets home from school because the last two allergy injections I gave him he ended up having reactions to. I'm not feeling comfortable with doing them at home right now since he is not yet into maintenance, so I'm going to try to turn it back over to the nurse for a little longer. It gets tough sometimes having to squeeze in that extra appointment each week, but I have to.
All I can say is that life is moving faster apparently than what I can keep up with. I feel like I am the last bow tied onto the tail of a kite flying wildly through the air. I’m doing my best to hang on tightly, but I occasionally feel like I am slipping! I’ve accepted it as just the way life is right now, but the guilt of not keeping everyone informed or staying in contact with all of you still weighs on me. I have over fifteen hundred unopened emails in my yahoo inbox. Please forgive me if you’ve tried to contact me lately. I am going to make getting back in touch with everyone a priority, very soon, hopefully. For now, I am still trying to manage life one day at a time. It continues to be quite a struggle for the planner in me!
To catch everyone up with what is currently going, Sicily went inpatient this afternoon (room #312) to begin another round of ICE. Last Friday morning I was in contact with the sweet lady at the clinic here who is in charge of CT scans to find out if there was any news on the scan from OKC. As I feared, they don’t have it, but she did say she overnighted the scan performed here last Monday to OKC and hopefully they would be able to compare the two. As of this afternoon, neither clinic’s are in possession of the scans they need.
Returning to Friday, by the afternoon, I told Patrick that I was ready to let go of the worrying as it really was out of my control and not doing me any good. Our consensus was that we were ready to continue with another treatment, anyway…we just wanted to be able to hear and grasp a number, a percentage that would confirm that what we are doing to our daughter to rid her of her cancer is working to some extent. We are not going into this round of treatment completely blind, but we are trying to maneuver through the fog a little.
It was recommended and decided to cut back the drug, Ifosfamide, to half dose and only administer it on days one and three. This will hopefully cut the chances of Sicily suffering from the horrible neurological side effect of the two previous treatments. This drug is still considered vital in the mix and cutting it out completely is not an option. The plan, for now, is to go two more rounds of ICE, then scan again to evaluate the next move. I asked Dr. Hum if surgery would be a consideration, again, and she said that if Dr. Puffenbarger, Sicily’s surgeon in OKC thinks it is a possibility, then it could be. She said a biopsy, at least, may be warranted down the road to check if what is left after more treatments is still active tumor or scar tissue. That is all hypothetical and I would be on cloud nine if or when that decision has to be made, because that means we would be shrinking the heck out of this cancer! Meanwhile, we are about an hour away from starting a dose of Carboplatin, followed by Etoposide, and finally Ifosfamide. Methalyne Blue, like before, will be given every six hours to help counteract the Ifosfamide.
Sicily is in great spirits this evening and her personality and spunk are helping my mellow attitude of late! I have been in somewhat of a funk lately and it’s been hard to climb out of it or pinpoint the cause of it. Saturday morning I really started feeling like I was near a breaking point. Nothing in particular has me feeling low, just the combination of everything. My heart was broken when school was canceled for Thursday due to the extremely cold temperatures. When I told Sicily, she cried in such disappointment. She awoke in the night crying about missing school, and then again in the morning. I promised her she WILL return to school. It is a true balancing act wanting to protect her but also wanting to hang onto the quality in her life! As long as her counts rebound after each of these treatments, I will take her to school. There will most likely only be a small window of opportunity to do that as it takes about two weeks for her white cells to rebound which leaves us with one week. We will take that! Something is better than nothing. I think the fact that she did not get to attend school that second day weighed heavily on me. Once again, it was completely out of my control and there was nothing I could do about it, but it made me very, very sad.
Saturday morning just didn’t start out very well. Sicily became upset with Elias for some reason or another and bit him on the back. I know she is not living the typical life of a four and a half year old little girl, but I refuse to raise a spoiled child. I have said from day one…”Cancer or no cancer, I will not raise her to be spoiled!” I feel frustrated when she acts in this manner as it’s not fair to anyone. I don’t want our other three kids to feel like they need to give into her demanding behavior, which rears its ugly head from time to time (actually, quite often, unfortunately)as they may end up resenting her. No matter how this all turns out…if she lives to the ripe age of ninety-five with two thirds of a functioning kidney, she will not be spoiled. Whether God calls her home early, I will not send a spoiled child up to heaven! Silly as that all may sound, it’s just part of the balancing act we call our life! It’s hard and very frustrating at times. It brings me down and starts to dissolve the inner strength I work so hard to maintain. God never forsakes me even in the times I feel that I am barely hanging onto a string…the last thin thread of that kite tail.
Sometimes we have to fall down flat on our faces and be trampled on a little so we can appreciate what we have when we are able to stand tall and walk without tripping. I’m pretty clumsy and not very coordinated so I find myself tripping quite a bit, so to speak. I have a natural and self diagnosed biological tendency to slip into little mini depressions. Nothing serious enough that conversations with God and hugs from my husband and kids can’t eventually fix, but it can add to the hurdles of day to day life. I felt like I was laying on the ground Saturday morning. Patrick and I decided that due to the absurdly cold weather, it was best not to take Sicily out to church so the older three kids and I attended Saturday evening mass without them. It was what the doctor ordered to help ease my dismal mood. As the kids and I settled into our pew, we were approached by an usher and asked if we would carry the gifts to the alter for the evening. In my book, this is a huge honor and one to be taken very seriously. There is always a feeling of nervousness and a bit of anxiety that attaches itself to this act when I am faced with it, partly because I am not comfortable in the visual spotlight as it is hard for others not to watch the family that carries these gifts which include the blessed body and blood in the form of bread and wine.
Saturday evening I felt very calm and actually experienced the foreign emotion of excitement as the time came. I had knelt and prayed to God as soon as we arrived at church that evening for Him to guide me, direct me, strengthen me and use me for His will, whatever it may be. I just want to be what He wants me to be. After folding the kneeler back into place and scooting back and settling into my seat, the usher propositioned us. Do I feel like it was a sign? Not exactly at that precise moment, but it dawned on me before I held the silver pitcher representing the blood of Jesus in my hands and escorted my children up the isle and to the alter. I felt full and satisfied. I was actually overflowing. The feeling was indescribable.
God never forsakes His children who come to Him when they are in need. When I am emotionally, mentally and physically drained, I tend to furrow my eyebrows and stubbornly convince myself that I don’t need help, when in actuality, I desperately do and the only One who can help me is there twenty-four seven, three hundred and sixty-five days a year, without fail. All I have to do is seek Him. It’s that easy! It’s that free! It’s that helpful! All I have to do is ask! ”So I say unto you, ask and you shall receive; knock and the door shall be opened up to you; for everyone who asks, receives; he who seeks, finds; and to him who knocks, the door will be opened.” Luke 11: 9-10
My journey of faith continues to be a daily work in progress. Every day I have to want to have my faith…I have to want to need my faith…I have to want to seek my faith. Like a good and worthwhile relationship, having faith takes effort. Just because one day I am full and overflowing with it doesn’t mean I will not face another day where I am in need of seeking it. Some days it comes easily while others days I have to work with all my might. In a nutshell, as I so often attempt to sum up my thoughts, this explains how a person can get through the obstacles and perils in and of life that grow, spring up and at times bury them alive. Ask, my friends…just ask! ; )
The princess is starting to doze off in the brownish orange hospital recliner. Chemo will be starting shortly and on its way through her little body to kill the cancer. Sleep will hopefully come easily for both of us. We are in the care of our favorite night shift nurse. It’s a peaceful feeling being under her care and watchful eye!
I will say “goodnight” or for most it will probably be “good morning” before you read this. I will try to update more tomorrow and report how Miss Sicily is doing!
This seems to be about the only time I currently have to update. I'll take it! Between Uno games, walks and time in the playroom today, the hours went by pretty fast.
It was a good day. A full day. Sicily slept pretty good through the night in between the three potty breaks. She received her three chemo drugs, including the half a dose of Ifosfamide. The thought process behind cutting the dose of this drug in half and skipping the middle day is the hope that her one little two thirds of a kidney will be able to handle it better and flush it out before the neurological side effect has a chance to take action. She did not show any signs of a complication after last nights dose, but it usually does not hit her until after the second days dose. Tomorrow night is when we will be praying a bit harder that this change works for her. We are supposed to be discharged sometime on Thursday, but if she has a problem we are prepared to stay longer...whatever it takes.
A pink jacket wearing hospital volunteer appeared in the doorway this afternoon to let us know that she would have the play/art room open this afternoon. We weren't able to visit it the last two inpatient stays so this was a treat. The sweet volunteer set Sicily up with some paper and paints and sat down beside her. We began to discuss Sicily's cancer and all the things that go along with this life altering event. I explained that we try to look for the blessings that are sometimes hidden in the difficult and tragic events in our lives. I began to tell her that because of Sicily's relapse with cancer, we were able to discover our other daughter's medical condition. I didn't use the term “diabetes,” but began to lay out the scenario that played out the last weekend in October. Before I finished, the volunteer replied, “Don't tell me she has diabetes?” I answered, “Yes,” with somewhat of a puzzled tone to my voice. I continued, “Our twelve year old was diagnosed with type I.” She smiled at me. The kind of smile that emits a kind of compassion that only someone who understood what that meant could give. She said, “I am diabetic, type I...have been for thirty-six years since I was twenty-five.” I got goosebumps and I could have easily shed a tear, but held back.
I could have sat and talked to her for hours as Sicily painted away with her abstract art. Unfortunately, we did not have ample time, but what we did discuss was very informative and beneficial and I am so thankful Sicily and I were able to sit in the playroom for a short spell. I also enjoyed talking to the teenager who is inpatient next door to us. She came to the play/art room for a little while and she was a breath of fresh air with her positive attitude. I hope to get to talk to her more tomorrow, if possible, when I return. By the way, I am at home right now helping kiddos with homework...well, Corinthian is helping Isabella and I'm trying to get Elias to come downstairs so I can help him with spelling but he's practicing his selective listening skills. He's close to mastering this skill! ; )
Sicily and I eventually returned to her room after popping a bag of popcorn and she settled into the recliner to watch “Mary Poppins” for the third time. There was a knock on the door frame, as Sicily insists on leaving the door open so she can people watch (we are right across from the nurses station) and the child life specialist asked if Sicily was up for some visitors. She continued by saying that one of the Harlem Globetrotters, “Slick” Willy Shaw, and the Biggest Loser winning contestant, Danny Cahill, would like to see her. Sicily, being her usual stoic self, continued to sit in the recliner with the bag of popcorn in her lap. Willy Shaw looked awesome in his red, white and blue Globetrotter's gear as he spun the basketball on one finger...the famous maneuver everyone envisions when the name “Globetrotter” comes to mind. In my mind I am thinking, “Where is Patrick???” Danny Cahill had his guitar and played and sang a song he was inspired to write after his experience. It was a beautiful song of hope and he sang it with passion and feeling. He also gave Sicily a CD so I can't wait to listen to it again. He is a great guy with a great personality. I have to brag because Broken Arrow proudly claims him as its own. I have a lot of respect for men like these two fellows who take the time to visit and entertain the kids at the Children's Hospital! I really appreciate them. I overheard in the hallway someone saying that they were at OSU the same time Garth Brooks was...I kidded with her, “Can you get him here?” ; ) (I think he has a house somewhere near Tulsa) What I wouldn't give to hear him sing “The Dance”...my all time favorite song of his. If I would have been told before I had children that one of them would have to suffer and fight for her young little life, and another would have to live with a life long medical condition, knowing what I know now...I would still bring them into this world. I love “Dancing through life” with them. ; )
One last little tidbit. For Christmas, I searched all over the internet for a very special gift for Sicily. This little gal loves to play doctor and nurse. She plays it more than anything else. I bought her a pair of pink scrubs and also a little child sized white lab coat that I ironed on, “Dr. Sicily.” She wore her get up yesterday around the third floor hall of the hospital. She's a little walking example of why we need to save her life and the lives of other precious children like her. She wants to be a nurse or a doctor when she grows up...if she gets to grow up! Maybe she will be the doctor who saves dozens of lives. Or maybe she will be the nurse who cares for the elderly (her parents) or gently helps those in need or calms the fears of little ones faced with painful medical procedures. Seeing her in her little medical attire is something. It only drives my desire to save her life even deeper!
Love to each and every one of you and thank you for being dance partners with us! When we finally kick this cancer to the curb I'm going to run out and buy myself a pair of cowboy boots and start doing the “Cotton Eye Joe!” Anyone care to join me? ; ) Sorry, I'm a little tired and a bit loopy. I start to have a little too much fun with my imagination when I get this way! I have to make myself think of something funny after pulling up “The Dance” and listening to it as I typed that last paragraph! My kleenex fell apart! : (
Thursday, January 14, 2010 9:04 AM, CST
I updated late last night so many may not have read that journal entry yet, but I just wanted to jump on her quickly to report that Sicily is doing great. She suffered non of the previous side effects. Thank you all for the support and prayers! She is getting her last dose of Methalyne blue and I have already signed her discharge papers. Aunt Pat is on her way here to help us pack up and head home. I'm looking so forward to this weekend having us all under one roof, and as a bonus, the temperatures are forecast to be really nice. Yeah! ; )
This inpatient stay went so much better than the previous two...Thanks be to God!
Wow, what a wonderful day we’ve had. Sicily is doing really good. She is receiving her second half dose of Ifosfamide as I type so we will hopefully know soon if this course of action will work in her favor. She is do some good luck. We had Chinese food for lunch with Aunt Pat and my dear friend, Walgreen’s Kelli. Sicily, Kelli and I later opened our fortune cookies and it was decided that Kelli and Sicily should trade with each other as the one Kelli opened read, “Keep on charging the enemy so long as there is life.” Wasn’t that awesome and so fitting for Sicily? So Kelli gave it to her. We liked it!
The morning started off with me taking Isabella to the bus stop by herself as I had to take Corinthian to an orthodontist appointment a little while later. Aunt Pat treated Elias to a special breakfast at Sonic before he boarded the bus. Boy, did he feel special. Poor Corinthian was already experiencing some pain before we even left the doctor’s parking lot as he now has to wear bands that connect his top teeth to his bottom teeth. I took him home and gave him some Ibuprofen before delivering him to school in hopes of easing his discomfort. Aunt Pat relieved Patrick at the hospital so he could get to work and she and Sicily had a good time shopping at the hospital gift shop. ; ) I returned later with the Chinese food.
This morning Patrick reported that Sicily stayed up part of the night. It wasn’t due to discomfort or suffering from any chemo related issues of the past…it was because of a tournament of flashlight Uno with sweet nurse Kathy, who, by the way, Sicily kept referring to as Aunt Kathy. She’s not used to saying the name “Cathy” unless she puts the title “Aunt” in front of it. She beat Kathy eight games to four. Sicily is one fierce Uno player! She’s quick, decisive and very calculated in her moves. Does Vegas have an Uno table? ; )
Kelli hung out with Sicily and I all afternoon and we had our usual laugh fest! I think we were part of the same soul in a former life. I have encountered few people in my life that just truly “get” me and Kelli “gets” me…and then she laughs at/with me! Love her! We walked the halls with our new chemo friend and neighbor, Morgan, who had us in stitches, as well.
Morgan is a fifteen year old girl with the maturity of someone two or three times her age. She is truly amazing. She, like Sicily, is battling cancer for the second time and her attitude is so inspiring. I love being around her. She sees herself as a role model to younger kids battling cancer and believe me, she is that and a whole lot more! Kelli can vouch for me on that one! We were in total awe of this young lady and her ability to see past the devastation of cancer. I am now a member of the Morgan Mitchell fan club! She’s planning on shaving her head sometime tonight as her short hair is starting to fall out again and she wants to give herself a Mohawk. Hope I can stay up late enough to watch her!
On a more serious note, my heart sank last night as I watched the news and learned about the devastating earth quake in Haiti. Not long after Sicily was diagnosed in August 2008, we had a visiting priest, Father Tom Hagan, come visit our parish from Haiti…the place he lived and worked…the place where no one dared to go due to the violence and crime. He was making a difference in the area of Port-au-Prince known as Cite` Soleil. When I learned of the disaster last night, I couldn’t help but think of him and pray he would be okay. I called our church this morning, without really thinking I may get an answer, but felt driven to find out, none-the-less, if there was any word on Father Hagan. There had been. He was okay. I felt a huge sense of relief. He made a huge impact on me in a very short span of time and I have thought of him often. I still can’t believe the horrible situation that has occurred. Hard to fathom and wrap my mind around. It puts a lot of things into perspective for me! I know I don’t even need to ask for prayers to be sent in that direction!
I’m getting pretty sleepy and want to get Sicily into bed. She’s still up and I’m watching her closely to see if I can pick up on any little changes. I’ll report tomorrow how our night goes.
It’s been awhile since I’ve updated…basically because there has really not been anything major to report. Sicily had an appointment to check her numbers on Monday and the computer system was down at the hospital. Our nurse called later to give us a report and her numbers were not too bad but looked to be on the way down.
Monday evening Sicily developed a cough and it has continued. This evening she fell asleep on the couch after not being herself much of today. I went to kiss her on the forehead and she was on fire. I took her temperature and it was 103.2. I waited a few minutes and took it again and it was the same. Before I even called the pediatric oncologist to report Sicily’s fever, I started packing. I sort of keep a couple of bags packed for this such of an occasion and just add to them whatever else we may need. Sicily’s doing okay. She cried only for a minute and then just accepted what needs to be done. So if she can do it, so can I!
Sicily is hooked up to fluids and has already received an antibiotic. Her cultures have been collected and she has had a chest x-ray. This has become pretty routine for us this time around. This treatment really knocks her down but we know she gets back up and recovers pretty quickly.
So, she and I are in our pj’s and getting ourselves settled in for the next couple of days. Pray this is nothing serious and we are home by the weekend.
Thursday, January 21, 2010 11:01 AM, CST
Sicily and I did not sleep too well, as was to be expected. Between her frequent coughing fits and the crying baby somewhere near us, rest did not find us. We’ll manage. She is fever free right now but that could be due to the Tylenol she has been taking since we arrived at the hospital yesterday evening. She received half a bag transfusion of platelets around midnight and is currently absorbing half a bag of blood as I type this. For the next few hours I will sit close by her and watch the bright red fluid as it slowly drips from the bag hanging high on the IV pole and through the tube that runs directly to her port. As I do this, there is a sense of guilt that plagues me as my mind drifts to the thoughts of all the people in Haiti that are in desperate need of medical attention. I can’t complain as I sit in a nice hospital room with concerned and compassionate nurses and doctors looking after my daughters care and every need. I have no room to complain of anything just knowing what else is going on in the world around us. That is why I can calmly sit here and wait for my little girl to feel better.
There always seems to be a tendency to want to rush to get here so we can rush to get home. I don’t feel that right now. I do miss being at home with my husband and other three kids. I miss sleeping in my big comfy bed that my body is accustomed to sleeping in. I miss lots of things but have learned to let go of so much of that and let myself feel lucky, instead, just to be here! We are so very fortunate to live in this country. It may not be perfect…in some instances we are far from perfect, but we can’t deny that we are fortunate! I won’t as I sit and watch video after video of thousands of people in Haiti physically and emotionally devastated…not knowing what the next hour, minute or second may entail. I count my blessings and thank God for everything! EVERYTHING!
Dr. Hum knocked on the door to our room a little before nine this morning. I was not asleep but not yet awake either, still lying down on my narrow little sleeping space. I threw back my white hospital laundered smelling blankets and moved to the orange/brown recliner to be able to sit and listen more attentively. Dr. Hum proceeded to say that she and Dr. Meyer both, along with each hospitals radiologist, were finally able to review the two abdominal CT scans. She quoted the changes in measurements of the remaining tumors and guesstimated the percentage in change to be between 30 to 40 percent in volume. Good but not great. We’ll still take it. She did mention there is an area at the top that raised a little concern. It will be closely watched as it is too early to tell whether it is an area of growth or scar tissue build up. She said she and Dr. Meyer were both still pleased with the outcome.
We are going to go ahead with the previously discussed change from the ICE protocol and try Irenatecan along with two other drugs to see if we can affect the tumor even more. Irenatecan is one of the four drugs that showed up as potentially “clinically beneficial” on the molecular profiling tests that were performed in Arizona. I’m excited and anxious to start it on Sicily. It will require a longer hospital stay, five days of treatment instead of three, but we’ve done that before with her protocol from last year. The plan is to do this for two or three cycles and then scan again. They may switch back and forth between the two drug regimens to attempt to throw off the cancer from trying to build up a resistance to either one of them. Pray this will work and will be the key to destroy this beast once and for all. The Irenatecan should be less harsh on knocking down her numbers but has the side effect of diarrhea. They will counter balance that with other medications. The teenager we met last week, Morgan, was on this drug and her only complaint so far was that specific side effect. She humorously referred to the drug as, “I ran to the can” instead of Irenatecan. You have to look for the humor and laugh as much as you can when something that funny is discovered. ; )
I also discussed with Dr. Hum the possibility of another surgery in the future if it can be determined that the tumor has retracted from the area of the vena cava. It is still listed among the possibilities, but we don’t go any further in the plans as things still have to be taken one step at a time.
Well, I’m still in my night attire and Sicily has dosed back off to sleep in an almost up right position in her little child sized hospital bed. She has her knees drawn up and one crossed over the other...not the most comfortable looking sleeping position, but it works for her! I need to jump in the shower and rejoin the land of the diurnal living. Our nurse tech just came in to inform me that the phone lines are down. That would explain why my mom hasn’t called me back. Better get in touch via the cell. What would we do without all of today’s modern conveniences?
Friday, January 22, 2010 2:20 PM, CST
We are home!
We were cut loose around 12:30. Sicily is doing and feeling great. Give the gal a little platelets, blood and antibiotics and she’s rearing to go. Daddy took over the night shift last night so I could attempt to catch up on some sleep. When I arrived this morning Sicily was curled up asleep in the orange/brown reclining chair…sans the reclining. Patrick said she slept there all night. Oh the things she gets away with when daddy is on duty. ; )
Everything pretty much came back okay on all the tests that were performed to pinpoint the cause of the fever. There is still a couple out, but Dr. Hum let us come on home since Sicily is doing so well. If something comes back questionable, she will just call us back in. We will continue with the GCSF shots until at least Monday when I take her to the clinic for a numbers check. If her white counts rebound like we hope for them to, she will go inpatient the following week to start the next treatment. She will most likely need more platelets by Monday, as well. Pray for an event free weekend, please!
Corinthian started feeling bad yesterday evening and woke up with a fever over 100 this morning so he is home today. He is very bummed as he hates to miss school and he will also miss a school dance tonight. It stinks and I feel for him, but that’s when we just have to accept situations when they are out of our control and we can’t do anything about them!
I am sitting on the floor outside my bathroom as I type this so I can keep a close eye on the fish swimming in my bathtub. This is pretty much the routine whenever we come home from the hospital. This isn’t the most comfortable position to type so I will sign off shortly. I just wanted to share a little story about Elias…I think I could write a book on that boy alone!
After having a conversation with my sister, Cathy, we’ve come to the conclusion that Elias has the heart of a humanitarian. He has been very affected by the news and footage he has seen streaming across the news every night about the tragedy in Haiti. His little eight-year-old heart has been drawn to want to take action to help in some way. His first idea was to have a garage sale to sell some of his toys he said he doesn’t need any more to raise money to aid the Haitians. We’ve explained that it isn’t a good time of year for a garage sale but we can definitely look into it in the future months. The people of Haiti will need help for a long time to come. Just because he is not able to sell his toys right now doesn’t mean he can’t later.
He came up with another idea…something he actually weaved his mind around, literally. Isabella received a loom and loops to weave potholders out of for Christmas in 2008. The kids had attempted to make some but lost interest when we couldn’t figure out (and I couldn’t remember) how to finish them. While Aunt Pat was here helping us out last week, they got the looms out again to see if they could figure out how to finish them. It just so happened that I ran across a little book in the hospital gift shop that gave instructions. I bought it, brought it home and handed it to Corinthian who quickly figured it out and proceeded to teach Isabella and Elias. Elias fell in love with this activity and decided that he wanted to make some for his teacher and some other staff at school. Then his little brain decided that he could sell them to raise money for Haiti. We already ran out of the cotton loops so I have ordered more online. Our local craft store has the polyester kind, but we like the cotton better. Elias is anxious for them to arrive. I just love this little boy’s heart! He is ornery and can pester and question a person to death, but he has a heart of pure gold. I can’t wait to see what he grows up to be. No matter what he does, he makes me proud and honored to be his mom!
Well, the fish is wrapped in a black and white polka-dot towel and ready to put on her KU cheerleader outfit she bought with Christmas money from Grandma Zeka. She happened to watch part of a marathon of “Bring It On” movies last weekend and became enamored with the cheerleaders. The outfit arrived in the mail yesterday and daddy delivered it to the hospital and it has become her favorite choice of clothing for now and most likely the next few days.
Isabella is attending the middle school dance without the watchful eye of her older brother and it is the first event since her diabetes diagnosis. At the beginning of the week she expressed concerns and doubts about going, but this morning when I offered her an out since Corinthian wasn’t going, she replied as I dropped her off at the bus stop, “All my friends are going, and besides, you’ve already paid for it so I don’t want to waste your money.” Okay, then! I will drop one beautiful young twelve-year-old lady off at the middle school for a little socializing. She will just carry her diabetic supplies in a cute little black knitted shoulder purse made by a dear family member that will just look like it is part of her outfit!
I’m going to attempt the crazy task of painting our master bedroom this weekend. It’s just one of those nagging projects I’ve wanted to do for a long time so I am just going to dive in! Wish me luck! If you don’t hear from me in the next few days it will be because I will be taping baseboards, door trims and crown molding and climbing up and down a rickety old ladder a couple dozen of times! Can’t wait.
Well, looks like there has been a change in wardrobe…Sicily has appeared in her pink scrubs and is asking to take my temperature. Nurse Sicily is on duty. We’ll all be taken good care of this weekend! ; )
Monday, January 25, 2010 4:45 PM, CST
Sicily and I are in the clinic for the second time today. We came in for an appointment at 11:00 this morning but the lab was running over an hour and a half behind so we did not stick around to wait for her counts. I was pretty sure we would have to return but took the chance and had her needle removed from her port. We headed home since Corinthian had to miss another day of school again. He is on an antibiotic and is hopefully on the road to recovery. This illness hit him pretty hard, especially for a kid who very rarely gets sick.
Even though I knew we’d most likely be making a second trip to the clinic, it’s still hard. We left the house without applying the Emla cream (numbing medicine) or “whipped cream” as Sicily used to call it, to her port. Luckily I carry a tube in my purse along with big band-aides. We usually just use Glad Press ‘N Seal to cover the area with cream as it is so much easier and less painful than having to remove a band-aide. The most important thing is that I was able to apply some cream in time. It has to be applied twenty minutes before access. I had to pull over on the side of the road as soon as I realized I’d forgotten it. When I removed the band-aide from this mornings visit, it was full of blood…hence the need for platelets. Her blood isn’t clotting too well, so here we are hooked up to an IV of cloudy yellow fluid. Her platelets were at 8 and a transfusion is ordered when they get as low as twenty.
We will return on Thursday to check counts, again, and we already have an appointment scheduled for next Wednesday to go inpatient for six days. It will be a long stay, but we’ve done it before and we have support coming to help. Patrick’s sister’s, Teresa and Bett, and also Patrick’s brother and and sister-in-law, Larry and Jane, are all ready to fill the roles of extra parents we desperately need during these times. We are so blessed!
If Sicily continues to feel good in the morning, I will take her to school. We need to keep those brain cells busy and out of mischief at home. I know she gets tired of being home all the time. It wears on us all. This past weekend was tough with her behavior. Some can blame her chemo, but as parents Patrick and I both know this was part of her personality before cancer entered our lives. It just makes things that much harder to deal with sometimes when she acts out and is hard to verbally re-direct. I find myself having to let go of my frustrations late at night when everyone else is asleep in bed. The tears flow and I try to find ways to figure out how to make it through the next day or event! I’ve found myself getting upset or mad over little petty things at times because I can’t direct my frustrations at this cancer and what it has done to our lives! Some days are just hard, and for no apparent reason! I continue to do the best that I can.
On a happier note, I am pleased to report that Isabella did great at the school dance last Friday night and reported having a great time. I worried the entire two hours but was so relieved when I picked her up. She proved to both of us that she can manage things if she needs to. I talked to her about remembering to read her “signs” if she started to feel herself getting low. She did not end up having to check her blood sugar at the dance but just waited until she got home and it was exactly where it needed to be. I just chalk it up to another obstacle over come!
I managed to paint about two-thirds of our master bedroom over the weekend. It was what I had hoped to accomplish, so that was good. I took Elias with me to one of my many Wal-Mart runs for one thing or another and he ended up bringing home a guitar. He received money for Christmas and begged for me to let him buy it. He loves it even though he can’t do anything with it. I took lessons for a year when I was in high school but couldn’t even remember how to tune it. We’ll have to work on that.
Well, it’s about time to go home so I will sign off.
We are all doing pretty good on the home front. Sicily was able to attend school yesterday and is there again today. She finds such happiness there! When I walked her into her classroom yesterday morning, we hung up her backpack and coat, put her lunch bag in the plastic lunch container and she looked for her name on a desk. Her dear friend, Lillian, came up and gave her a big hug. It was hard not to melt at that sight. When I relayed the event to Patrick later in the afternoon over the phone, it made me cry.
When I entered her classroom at the end of the school day, her teacher reported that Sicily was able to jump right back into the swing of things and didn't seem to miss a beat like she's been there all along. I thank God that she is still able to be a part of her little piece of the world. Just her knowing she can still return every once in awhile does us both a heap of good.
Corinthian is starting to feel a little better. I think he still felt kind of yucky yesterday, but he stuck it out, which was completely his own doing. He has a very strong drive, or work ethic, if you will, when it comes to school. He has realized that being enrolled in advanced placement classes makes it kind of tough to be absent. He hates missing out on discussions in his literature and language classes. Those are things that can't be made up at home. I have to keep reminding him that he can't help it if he was sick. He has pretty high expectations of himself. Makes it easy on Patrick and I that he is that way where school is concerned.
Now Elias on the other hand...; ) I know better than to compare our kids. I have to laugh because he, so far, has shown himself to be the exact opposite of Corinthian where school is concerned. He may be even brighter than his older brother, but he wants to take the easy rode. I'm not sure this is a personality trait that can be altered. We find ourselves having to remind him a lot to the point we are nags. I just want him to give a hoot, that's all. He is definitely his own person! Got to love him!
Isabella has remained healthy and so far has missed the bugs that zapped Corinthian and Sicily. The H1N1 virus vaccine was offered at both middle and elementary schools so I had all three older kids receive it. No one can afford to be sick, but the thought weighs heavily on us as we walk such a tight rope already. We try to make sure the kids all get plenty of sleep and there is always a gallon of orange juice in the fridge!
Well, the sun finally decided to make an appearance this afternoon after a very gray morning. We are expecting a pretty severe winter storm to blanket us with ice and snow over the next couple of days. I'm not sure what the plans are as of yet concerning school, but my best bet would be that Friday it will be canceled. I'm okay with it this time. I'm ready to burn a fire in the fire place thanks to all the wood Aunt Pat brought over a couple of weeks ago from Wellington that Uncle Robert chopped up. We'll be nice and warm and cozy.
Sicily has an appointment tomorrow morning to check her counts. I don't think the weather is supposed to be worrisome until later in the day, so I may even be able to take her to school for a bit after her appointment. Wouldn't that be awesome...her getting to go to school all three days? None-the-less, I am so happy she got to go these past two. It's the fuel that fires up her resolve and determination to get through each treatment! Mine, too! I've said it many times before and will say it over and over again, there is no place on earth she would rather be and no place I'd rather take her! I miss having my little shadow around during the four and a half hours she is there, but it is good for the both of us to be temporarily separated.
Last night she sat in bed with me after I sorted some laundry and just hugged me and said, “My mommy!” I hugged her back and kissed her sweet little bald head and said, “My Sicily!” I will cherish moments like that forever. I hope I have years and years of such moments, but in case I don't, I hold on tight to what I've had.
It's already time for me to go pick up my pocketful of sunshine. She will be anxious to come home to see kitty and look out the window to check if any birds found the bird feeder she made at school yesterday (cardboard toilet paper holder spread with peanut butter and rolled in bird seed). She can't wait for the birds to find it. They may be appreciative of it, too, once our ground is covered with snow!
Everyone have a good middle of the week. I'll check back in soon!
I took Sicily to the clinic this morning for a check of her counts. She is doing okay and we have another appointment scheduled for Monday to see if she will be ready for her next inpatient chemo treatment on Wednesday. Her ANC count was over seven thousand on Monday and has dropped now to around three thousand. Still in the normal range but I hope they can behave themselves until next week!
Yesterday afternoon after Elias arrived home from school, we immediately departed for the ENT (ear, nose and throat) doctor's office where he receives his weekly allergy shot. We have the freedom of going in at any time on either Monday, Wednesday or Friday each week. It varies with our schedule and we try to squeeze it in before school some days and after school on others. Last week we went midday on Monday as the kids were all out of school for the Martin Luther King holiday. Sicily had an appointment at the pediatric oncology clinic that morning. Elias came along with us as we planned to drop by and get his shot on our way home. The old “kill two birds with one stone” thought process.
Sicily likes to go with us to see Elias get his shot and help him be brave, even though he has become very used to it and doesn't mind it at all anymore. It's somewhat of a solidarity movement on her part...I think it provides some comfort to her that two of her three siblings also require needle pricks quite often like she does. It some how makes it easier on each of them just knowing they aren't the only ones having to endure them.
When we arrive at the office each time, I fill out a simple little form and hand it to the same sweet gal, Crystal, who patiently waits behind the sliding glass window. She is a familiar face that greets us with a smile every time we are there. As I leaned over the little counter ledge to fill out the required information on the allergy form yesterday, I heard Crystal's voice say something about a picture of herself when she was on chemo. I looked up, at first not realizing she was speaking to me, and saw her handing me a picture of an adorable hairless headed little girl in a bathing suit standing on a beach. At first glance, it could have easily been mistaken for Sicily as she posed on the beach in Florida last summer. But with a closer look I could easily recognize the same sweet smile of the grown young woman there before me.
Crystal said she wanted to show my daughter what she had looked like as a little girl when she was on chemo. I could feel the warmth welling up in my heart. Since I hadn't brought Sicily with us as she was asleep upstairs when we needed to leave, I asked Crystal if she would make a copy of the picture for me to take home to show Sicily. As she was copying it, I asked her what type of cancer had she been treated for and I honestly wish I could've seen my own reaction as I heard her say, “I had a Wilm's tumor!” I do recall feeling my jaw drop to the floor. I can't explain why this was such a big deal to me other than just seeing and knowing of another long term survivor of Wilm's. We have now met two.
As parents currently journeying through this battle zone, it gives us great hope & determination when we encounter someone who has survived the initial war. Anyone who has ever been touched by cancer knows the war can last a life time. In other words, the long term effects of treatments can be long lasting...so much about what the future holds is unknown. But that goes for each and every one of us! Cancer or no cancer, none of us knows what tomorrow holds! I think the most important thing is to realize what a gift life is, and I think Crystal validates this! I think she knows how valuable her life is!
I wish we all could realize that! From now on, every time I take Elias in for his allergy shot and we are greeted with Crystal's smile, I will be reminded that our own story can have a happy ending! I can see before me proof that cancer doesn't always win! God has laid before us an example so that our hope can be renewed on a weekly basis, if needed. Funny thing is, if Elias hadn't had those two reactions from the shots I had administered at home before Christmas, I may have never known about Crystal. I would still be giving the shots at home and would be none the wiser.
It's instances like this where I can plainly see God's handwriting on the wall. It's my responsibility to notice it, read it, comprehend it and then share it. I shake my head in amazement as the tears form and burn my eyes when I ponder how many times this has happened. I love it. I hope God keeps writing on the walls around me...especially when I feel those walls closing in on me periodically. At least I will always know He is there and always will be! I want Him there, so He is there. His grace is sufficient!
Well, little Miss wants something to eat. Her appetite changes directions as fast as the Oklahoma winds change. Right now it's starting to flow in the direction of insatiable, but I love it! She wants ham wraps...sliced ham spread with cream cheese and then rolled around little dill pickles. She and Isabella could live off of them right now. Whatever it takes!
Everyone stay warm and safe, especially if you are in the path of this winter storm system sweeping through the great plains. It's a good time to be at home! I'm thankful we don't need to be inpatient. Always something to be thankful for! ; )
Just wanted to jump on here very quickly to report that we had a great weekend. The kids were out of school on Friday due to the snow. Unfortunately Sicily did not get to go to school on Thursday due to the weather, but will hopefully get to go on Tuesday.
She will begin her next inpatient chemo treatment starting on Wednesday. I just found out the young lady we were neighbors with last time is supposed to be there, too. I'm actually excited!
This gal is so amazing and her positive outlook and view of life is contagious. I hope we will be rooming close to her again. We just may have to put in a request! And to top it off, we have lunch plans already in place for Friday with our friend, Kelli. Kelli hung out with us the day we got to know Morgan and I am so looking forward to laughing my tail off when we all get together again.
God has blessed us in so many ways. He has surrounded us with the most amazing people...hundreds of people...some we know as well as ourselves and some we may not know at all, but He has sent them to care for us and we feel their (YOUR) presence!
I'm going to try to get to bed here soon, but I just wanted to let you all know we had a great family weekend! I love my family!!!
I take Sicily into the clinic in the morning and Elias has an ENT doctor's appointment in the afternoon. We'll be at another office and not the one we usually go to for his shot, but we'll hopefully get to see Crystal's smiling face on Wednesday morning when I take Elias in before school. Corinthian is doing great and Isabella is, as well.
Wednesday, February 3, 2010 3:59 PM, CST Hello all,
Just wanted to jump on here quickly so I can finish getting us settled into our room. We are in room #318. Sicily is in pretty good spirits and knows we will be here for the next five nights. I was a bit nervous this morning about whether or not she would get to go inpatient as her platelets were only at 64 thousand on Monday and they want them over 100 thousand before chemo. She almost doubled her count in two days and was at 119 thousand this afternoon. Yeah! She is hooked up to fluids and will get her first dose of Irinotecan sometime this evening. We'll have to be on the look out for diarrhea, but other than that we should not have any major surprises like those that occurred with the Ifosfamide!
I'll try to update more later. We have to deck the walls and door with red hearts to make this hospital room festive! ; )
Thursday, February 4, 2010 3:38 PM, CST
We are doing well. Sicily is snoozing in the orange/brown recliner right now so I thought I’d take advantage of this time away from constant UNO games to update.
Our night was so-so…for some reason she got up more than usual during the night to use the bathroom. I was on guard anticipating the bowel side affect so I don’t think I let myself rest too deeply, not that I ever do while inpatient, anyway. That is the number one reason why Patrick and I make it a practice to switch out every other night so that we don’t wear ourselves down and get sick. We feel blessed to have the luxury to be able to do that most of the time. We also feel blessed beyond belief to have such an amazing support system behind us. Two of Patrick’s older siblings, his brother Larry from Canton and his sister Teresa from Enid, are at our house right now helping us with some of our home projects while the kids are at school, and then assisting them when they get home. Like I’ve said before, we need to be a multi-parent household at times like this.
Yesterday during the clinic appointment before admission, Dr. Hum explained that she is going to withhold the order for GCSF shots once this chemo treatment is completed because the three drugs we are using this go round should be kinder to her counts. That is the hope, at least. If Sicily’s counts struggle when we return next Thursday to the clinic for a CBC, then we can always start the shots. Dr. Hum wants to give Sicily’s bone marrow a break since it has been put through the wringer lately. I pray she can have the break, as well.
Sicily’s only complaint right now is the discomfort she is feeling in her abdomen…what we are assuming is bowel related. As much as I hate the idea of it and cringe at the thought, I still wish just a little that her bowels would loosen and clean themselves out. She has always struggled with this issue and we need to take some sort of action towards it in the future. We were told over a year ago by the radiologist in OKC, Dr. Syzek, that one of the side effects of abdominal radiation could be problems with the bowels and it may take years before it rears its ugliness! We are always trying to stay aware of her “potty” habits and try to keep on top of things! We just don’t want her to have to suffer any amount of discomfort if it is something we can help or prevent.
Shortly after lunch today, there was a quiet knock on our partially opened hospital room door. In walked a young doctor who introduced himself and stated that he was a resident checking in to see if we had any concerns or questions he could convey to the oncology team. I discussed our concerns about the pain Sicily complains about in her abdomen and the history of her bowels. He asked her if he could press on her tummy and she nodded her head yes as he proceeded to gently examine her. He listened to her chest and asked her to take deep breaths as he rotated his stethoscope around her back to listen to her lungs. He stepped back and commented on how well she took her deep breathes. He seemed appreciative of her cooperativeness.
He had a very positive and friendly bed side manner…the kind you like to see when dealing with children, especially bald headed beauties like my own! He stood for a moment longer and then asked me a question I have never been asked by a member of the medical staff. He said, “Can I pray over your daughter?” I don’t know if I looked as shocked as I felt, but immediately answered as quickly as I could, “Yes, of course!” He knelt down beside Sicily in her reclining state and bowed his head. I followed suit and closed my eyes. As he asked our Lord to watch over Sicily and be with those whose care she is in, I felt the warm familiar build up of tears in my eyes. He continued to ask that the medicine she is taking be able to kill the bad cells in her body and the side effects to be minimal. As his prayer went on I could feel my heart swelling. After offering his words in the name of Jesus Christ, I opened my tear filled eyes and thanked him! I thanked him for bringing medicine and faith together. I told him we can’t do what we are doing without either one! We need them both!
It was such a breath of fresh air to have both wrapped up into one and having him walk into our room this cold cloudy afternoon! I still have goose bumps and the tears are on standby ready to fall at the first thought and recollection of this occurrence. Medicine is an amazing human creation, but it can only take us so far. God gave us the ability to understand our own bodies; the ability to comprehend the hard visual facts that science is in our mortal world, but He left a clause somewhere in the “contract” of humanity that states He has the right to intervene and perform His own type of medicine. The type of healing only He can practice…a divine prescription called MIRACLES. I’ve read about them, I believe in the possibilities of them all around me, and I crave one to appear in the life of my little girl! When I experience the act of a young physician praying over my daughter in her hospital room, my belief in miracles triples and I cry tears of pure gratitude. Thank you God!
Each and every time I accompany Sicily to this hospital I feel closer and closer to the people whose job it is to care for her. It takes very special and strong people to work in this type of environment. This job has to be very emotionally and mentally draining but also has to be so fulfilling at the same time. It is not a cut and dry world of medicine. When dealing with children, emotions can’t help but come into play and as for me I personally welcome them. I actually need them. God has placed certain people here to be with us for a reason. Like I’ve said so many times before, I am just thankful to be aware of what He is doing for us and not take a smidgen of any of this for granted! Answered prayers, once again! I know many pray for specific things and those who have prayed for the medical staff…He has heard you and answered those prayers to the highest level! ; )
As soon as little lady wakes up from her on again off again napping pattern, I am going to try to get her to do a little walking to attempt to stimulate her bowels to do something other than hurt her! She has been crying out in pain every once in awhile from what may be cramps and impending diarrhea. Pray for her to be comfortable. This is still better than what she had to endure with the Ifosfamide. She still laughs and acts like her usual stinker self in-between bouts. The good news is that we may be able to be discharged Sunday instead of Monday. With this treatment she doesn’t need the post chemo drug, Mesna, used to protect her bladder.
Well, she has awakened and is crying so I will sign off. Thanks for continuing on with us!
Today has been one of those days that may be hard to sum up in words, but I will try. It was wonderful! Sicily is doing very well and hasn’t complained about her tummy hurting much at all (answered prayers, again) and the day has just flown by.
The morning started off with me taking Corinthian to our pediatrician as he has continued to complain about stuffy ears since his cold almost two weeks ago. As it turns out, both ears are still infected so he is on medication to hopefully clear the infection and restore his normal level of hearing. I take him back in ten days to recheck his ears and access if anything further needs to be done. I love going to our new pediatrician’s office. I kid you not, we were in and out in eighteen minutes and about ten of those minutes were spent with the doctor. Having a son who hates to miss any amount of school, this was totally a good thing for him. We hopped over to the hospital, which was in close proximity to where we were, and I traded places with Patrick so he could take Corinthian back to school and head to work. Larry and Teresa were playing a few hands of UNO with the champ.
Not long after I arrived to Sicily’s room and Teresa and Larry departed to their perspective homes hours away, the child life specialist came to our room with a group of employees from McAlister’s Deli to present us with a gift. The employees of McAlister’s Deli pulled together their tips from the last year and purchased $100 gift cards from Target to give to some of the kids and their families who are frequent visitors to the Children’s Hospital. Their generosity was overwhelming and such an awesome act of thoughtfulness! The blessings of the day just continued to flow!
A little after lunch time, there was a knock at the door and I opened it to greet a gentleman who introduced himself and explained that he had left us a message on our Caring bridge site. I quickly put two and two together to realize who this man was…he works with the father of Sicily’s sweet little buddy at preschool. He is a familiar traveler of the road we are currently journeying on as his own daughter battled cancer, clear cell sarcoma (also a kidney cancer and a scary one at that) over eight years ago. He proudly showed me a picture of his absolutely beautiful daughter, now a young lady, who also happens to be the youngest of his and his wife’s four children. There is a feeling of true empathy and warmth when we can look into the eyes of another parent who can honestly understand what we are going through. A very strong connection is made and our mental sense of support expands just knowing this family is there! People make it through this!
While still conversing with this father, my friend, Kelli, and her hubby, Jeremy, brought lunch for Sicily and I along with our chemo buddy, Morgan. We scooted down the hall to Morgan’s room and had a blast playing Yahtzee and UNO. We broke out a package of rub on tattoos and covered Morgan’s bald head along with Sicily’s hands, a few on her legs and even a very masculine pink kitty cat on Jeremy’s upper arm. ; ) Do we know how to have fun, or what? It is so cool how the relationships seem to form in this type of environment. Kelli is no stranger to pediatric cancer as her cute young cousin has battle neuroblastoma twice. We’ve concocted a plan to “arrange” a marriage between him and Sicily so we can be related! We entertain ourselves with thoughts and dreams of the future.
Kelli and Jeremy spent their days off keeping us company and entertaining us…making our hospital stay enjoyable and downright fun! What may seem to some as a simple gesture, means the world to us. I know Kelli would love it if she could spend time like this with her little cousin down in south Texas when he would receive inpatient chemo, but since she was not able to, she does the next best thing and helps out another child. I think God likes this! ; )
Sicily and I ate a quiet dinner together. I ordered off the hospital guest menu and she ate microwave popcorn. Whenever we are inpatient she says she will wait and eat when she gets home. She doesn’t quite grasp the concept that her body doesn’t do so well if it goes without food for five plus days! So if microwave popcorn stimulates her saliva, I’m happy to serve it for dinner!
After dinner we had another knock at our hospital room door. A sweet smiling woman introduced herself and I immediately recognized her name from signing our guestbook. She is the mother of a little girl who attends the same preschool as Sicily and she also knows the cancer world all too well. Even though our daughters attend the same school, I never had the pleasure of meeting her until tonight. It speaks volumes to me when people take the time to come to this hospital to visit us and share their experiences and compassion. We sat and talked and I felt a strong bond with her, just like what I had experienced earlier in the day. I think this hospital stay could be considered one of the best I’ve experienced thus far since this journey began. I think God pulled out all the stops on this one and let the blessings flow freely. If you can envision my face, I will be going to bed with a perma grin plastered on my lower face! I am in awe of what surrounds us!
I’ve rambled long enough so I will sign off. Patrick will be here to take over in the morning after he takes Isabella to a choir event. Her independence increases with each opportunity to manage her diabetes on her own, as she will need to do tomorrow during lunch. Mama bear still worries but in the end is full of pride with her courage and acceptance!
We are home. Arrived home early yesterday evening. Sicily is doing really well and has not experienced any of the forewarned side affects of diarrhea, but she still could.
Saturday morning, before heading to the hospital to trade places with me, Patrick dropped Isabella off at a choir activity called Circle The State With Song. Her sixth grade choir class was one of nine total choir groups to participate in the program locally. The students came prepared with songs they had worked on in their classes and then had the opportunity to work with a guest choral clinician, as a group, who fine tuned their music, which was considered challenging, and prepped them for a performance. They worked from 8:00 to 2:00 and then put on a concert, which I was able to attend. It was beautiful! They sang eight different songs. When I scanned over the program I saw that they would be singing a song that I knew would stir my emotions. The lullaby, “All the Pretty Little Horses,” was on a CD I used to play over and over for Sicily when she was a baby. It definitely struck a sentimental chord with me and I had a hard time fighting back the tears in that dark auditorium!
Before I attended the concert later that afternoon, Patrick had brought Elias with him to the hospital. I think Elias was glad he went as he was able to interact with the three therapy dogs that were making the rounds on our floor. They were all pretty good sized dogs. Two were labs, one chocolate and one yellow, or blond. The labs made me think of a very special part of our family in Colorado who are so supportive of us, and they are of the four legged and hairy kind! ; ) Animals play such a huge role in the lives of people. These therapy dogs do just that...provide therapy to the kids in the hospital as well as their parents. I think I enjoy their visits about as much or even more than Sicily, if that is possible. When she hears they are coming, a lot of the time she waits at her door and peeks down the hall to check for them.
Elias also really enjoyed the visit from these calm and obedient creatures. He sat on the floor and had one of the dogs, a black and white dog named “Deeds,” pretty much turned into putty in his lap. The dog and boy were going to be hard to separate, but the time finally came for them to move onto the next room. I think Elias said about a dozen times, “Deeds is my favorite dog!” Like I said, the therapy they provide is such a gift! I really appreciate the time the owners take to do this!
Elias and I left the hospital and I took him to our favorite hobby shop as he has been dying to buy some science kits and a friend told me about some she had found at this store. Sure enough, with Christmas money he has been very frugal with (a characteristic from dad, not mom!) he bought an invention kit and a kit on physics, both containing a book and the supplies needed to transform his little scientific mind. He spent the rest of the afternoon hooking things up to batteries and turning copper wires and magnets and paper clips into moving working objects. His mind was completely and totally wrapped around each turn of the page and he marveled in what he was able to do. So did I!
Also after Elias and I left Sicily and Patrick at the hospital, Dr. Hum visited with them. She told Patrick that it looked like the Irinotecan was already starting to work. Not ever hearing this sort of statement right in the middle of a treatment, Patrick asked how she knew that could be. Apparently, they test Sicily's blood for any signs of tissue and it was showing up in her CBC. I don't know exactly how this drug works and am anxious to talk to some one about it, but there is a way to gauge the progress. It is hard to wrap my brain around it and even harder for me to control the excitement that is growing in my heart of the prospect of what this drug may be doing to the tumor!
Patrick asked if there were a possibility that the Irinotecan could completely eradicate the tumor and the answer is, “no!” Diffused anaplastic Wilm's won't go away that easily. Another surgery is still going to be the only way we can completely get rid of this cancer. That is what Dr. Hum said she and Dr. Meyer are working towards and hoping can happen. We will treat Sicily with another five day round of the three drugs she was just given and then scan to see if the tumor moved away from the vena cava.
The thought of Sicily having to endure yet another surgery, the fourth to battle the cancer and fifth over-all, makes my stomach clinch into a knot and my heart ache beyond belief, but it may be our only hope, and I am holding tight to that hope, still! I also still believe in miracles. They say that drugs alone can't battle this cancer, but I am praying with all my heart and asking for anyone and everyone to join me petitioning God to grant Sicily this miracle! I'd love to be able to show the world what He can do!
I recently had a conversation with someone about what I would say when asked, “Why does God let bad things like this happen, i.e. children with cancer or devastating earthquakes in already fragile societies?” The only answer I have and the only answer I completely believe in my heart, mind and soul is that God uses circumstance like ours, and others, to bring His children closer to Him. In my book it's quite a gamble, but it's also very simple. Sometimes it works and sometimes it doesn't. Sometimes those directly affected and persons surrounding them, both physically close and distant, are brought closer to Him, like us, for instance,through these trials.
Other times His children run away and blame Him for the very life He blessed them with. I think I run to Him a lot out of pure fear. What would happen if I didn't go to Him? Would things be worse than what they are? To have faith in God I think you also have to have a true understanding of fear and what it means in your relationship with Him. It's part of it, but in no means is it a negative thing! I fear Him so He takes away all my other fears. I know that sounds confusing. I even confuse myself (not a difficult task), but this is just a folder out of the file cabinet of my brain labeled, “How to understand life...to the best of my ability.”
I've never claimed to be very cerebral...I “feel” my way through life more than I “think” my way through, but that is just how God made me and I am fine with it! I'm sure I scare the heck out of the “thinkers” in the world, like my hubby. ; ) But we also balance things well by both representing our skills when decisions need to be made! It takes both kinds!
Well, little gal is asleep on the couch while big fluffy white snowflakes criss-cross the skies as they flutter to the ground. I think she slept the best she has slept in weeks last night. I didn't do too bad, either. We will head out in the winter weather in about an hour to travel down the road to Corinthian's school to assist him in high school enrollment. I'm still a little in denial that he will be considered a high schooler next year. And Sicily will be a kindergartener! She can't wait to board the bus with her big brother, Elias. Talk about an emotional day. We're doing everything we can for that day to get here!
Love to you all and thanks, sincerely, for being a part of our journey!
Wednesday, February 10, 2010 3:00 PM, CST Good afternoon,
We are all doing well. Sicily is slowly gaining back her appetite...but very slowly. I have just enough time in between treatments to put back the meat on her bones that she loses while inpatient. Right now she is so skinny her hip bones stick out. I hate that! I become the nagging mommy who begs her to eat and drink all the time! She managed to avoid the diarrhea side affect, which we are thankful for. Her bowels are doing what they should be doing for a normal person, not her usual stuff! ; ) We are happy, non-the-less!
She is snoozing on the couch...her favorite napping spot and is curled up with a big fluffy red Valentine's teddy bear she received in the mail yesterday. She looks so cozy! We are planning on working on her Valentine's for her classmates at preschool sometime this evening. Depending on her counts tomorrow, she may get to attend half a day of school. If she is not high enough, we will at least drop by her class to make the delivery. She has an appointment at 9:30 and I pray her counts are okay since we are not giving her the white blood cell boosting GCSF shots. She seems to feel good, but with her it's hard to tell for sure.
She made a unique observation yesterday. She saw my razor in the bathroom and asked why I needed to use it. I explained that when she gets older, she may decide that she wants her legs to be nice and soft so she will use it to remove hair. She sat and thought for a minute. I could see the wheels turning in that curious little mind of hers. She then looked over at daddy's sink and remarked how daddy has to use a razor, too, but for his face. I said, "Yes he does, so his face is smooth." A smile spread across her little mug as she said, "If daddy didn't shave and he grew whiskers, he could be a cat!" How much do you bet daddy will never forget to shave? He has to be so happy to know what he has in common with Stowie, the kitty! ; )
Little girl is now awake so I'd better run. I have to take Elias to the doctor for his weekly allergy shot as soon as he gets home and then we will work on Valentines along with Sicily. I love doing Valentines!
Thursday, February 11, 2010 3:01 PM, CST Good afternoon,
I am happy to report that Sicily's counts are holding their own therefore I was able to take her to school a little before 11:00. I was so, so, so happy for her. Her ANC was around 1900 so hopefully it will maintain or improve and she will also get to attend school next week.
Once we entered "The Stars" classroom and Sicily's classmates noticed her arrival, a group of them (mainly boys, since three fourths of her class are precious little boys) began to chant her name..."Sicily, Sicily, Sicily...!" Made my heart pound with excitement. It was so cute and sweet! She gets right back into the swing of things very quickly. She may miss school more than she makes it, but it's apparent her school doesn't forget her! ; )
Sicily has already stripped off the cute red and pink clothes I had her so appropriately dressed in and has donned her clothing of choice...jeans and a t-shirt. Whatever makes her comfy!
I have to run pick Corinthian and his buddy up from school as they have yearbook staff after school on Thursdays so he doesn't ride the bus home. His enrollment went great on Monday. Later that evening he said, "Mom, I forgot to tell you that I can take drivers ed second semester next year." "DRIVERS ED????" What? I think my hearing is a little off...sounds like you said, "DRIVERS ED!?!?" That can't be! But, alas, it will be. Patrick has already let him drive through the neighborhood (and, oops, there it goes...the neighborhood, that is) on several occasions in the old Ford pick-up that he will soon inherit. He could probably pass his driving test right now! Glad it's not legal here to do so, yet! I need to be eased into this upcoming milestone!
Everyone have a wonderful day and stay warm and safe!
I am so sorry for not updating lately but when there is no news, sometimes it's hard to journal. Plus, we've just been "normally" busy! I'm getting ready to take Sicily for her third consecutive day of preschool. She hasn't been able to attend a full week since October. It feels wonderful and I am so thankful she is feeling good enough to go. I have no idea what her counts are and quite frankly don't care at the moment. She hasn't bruised lately and has had an enormous amount of energy so I'm enjoying this break from watching every move she makes.
She will be admitted next Wednesday for another five day chemo treatment. After that we will wait a couple of weeks and scan to see what the latest drug regimen has done to the tumor. Please pray it is retreating away from the vena cava so surgery will be a possibility!
The past week has been awesome! Again, I am so thankful for every minute we've been given. I am reminded how scary and painful this journey is as on Tuesday, the little boy we became aware of last August, Cash Caywood, from around my hometown of Enid, passed away at the tender age of fifteen months from this awful disease. My heart is very heavy today and I am full of grief for this young family!
Cherish today and every day! As one of my favorite songs says, "Today's a gift and not a given right!"
I have a lot of words floating around in my head and when I have the time to sit down and pull them together, I will journal again. Until then, just imagine us "living!"
SICILY IS IN NEED OF YOUR PRAYERS MORE NOW THAN EVER!
I am sitting in the room that holds special memories of our dear friend, Esther. Last year about this same time, we were inpatient together and I remember walking on one of Sicily’s many, many walks past this very room and seeing butterflies hanging from the ceiling. Tons of butterflies made out of marker and water stained coffee filters appearing to float through the air. I guess it was appropriate that we be in this room at this time to receive the news.
Sicily’s pain is due to tumor growth.
We only have the report from the ultrasound as we are waiting to do an extensive abdominal and chest CT to confirm the findings, but the tumor in her right kidney bed has grown. There are areas of deep concern on her adrenal gland and liver masses have now been identified. Also a huge concern is that abnormalities are being documented with the remaining left two-thirds kidney. I know that when one kidney is lost, the remaining kidney can grow to compensate the level of function needed. This does not seem to be the case as the test reports a change in texture. This should not be happening. We don’t know the condition of the lungs, but with her recent cough development, I’m scared that they may find mets there, as well. I’ve shed tears and will continue off and on for some time, but I also have my wits about me and am ready to ask to go anywhere we need to go to help our little girl and do whatever is humanly and spiritually possible!!! If ever we’ve needed prayers, we are at DEFCON 5 right now…extreme high alert!
We are still waiting for the contrast needed to do the CT. She needs to drink over an hour when it arrives so it will still be awhile before the CT happens.
We’ve already had communication with our brother-in-law, John, who’s a pediatrician in Oklahoma City and who has been an important part of our journey. He spoke with Dr. Meyer to get his initial opinion on where we may go and he so far has recommended Texas Children’s Hospital. They are apparently well equipped to handle a phase one treatment plan, if that is what we decided to do. So much relies on the results of the CT so I’m past being ready to get the show on the road.
I will update as things progress and thank you all for your prayers, thoughts and endless support!
Thank you all soooo much for your prayers and words of encouragement. Have been fighting the tears and cannot even begin to fathom what the family is going through right now but definitely trusting God - He loves and cares more than anyone can.
Location: Leon is one of our "Seniors" up for adoption at www.mwdr.org
Yes, please let me know!
I remember last year, when Kerry was posting about Ester, and Sweet Sicily wanting to go to her funeral after she passed...
I'm crying too, it is hard not to, when you have been praying and following a family for so long! I want to scream at the top of my lungs that I HATE this beast cancer, that robs so many of so much... most of all time. Time for treatment, time for travel to treatment, time for fun, time with family, time for joy...
I'm at home as I wanted to be here to talk to the kids about the latest turn in events. I have sat and pecked away at this keyboard more times than I can count and feared the day I would have to report that Sicily's cancer is terminal. A complete cure is pretty much out of our reach and we have been given the usual three choices that seem to be handed to all parents who have walked in these shoes before us.
The CT scans came back worse than expected. The cancer in her right kidney bed has grown significantly, there is cancer in her liver, her intestines, her lungs and spots that eventually turn into cancer on her remaining left kidney. The three choices would include searching for a hospital that would accept her in a phase I trial (all experimental drugs and treatments). One of the issues with this is that they usually need the patient to be chemo free for three weeks prior to the trial and since Sicily had chemo yesterday, a lot of tumor growth could occur before she could even start the trial. In addition, the drugs used could be so harsh as to kill her themselves. I can't stand the thought of her passing away in a cold, white hospital room miles from home! Another choice would be to put her back on the ICE protocol, but that would only buy a little more time with her and prolong the inevitable.
The third and final choice would be to bring her home, enjoy every last second with her, make her as comfortable as possible, and surround her with all the love we possible can before God calls her home. In my heart I already know what my decision needs to be, but I'm not ready to verbalize it. I know so many of you wonderful supporters have offered us invaluable gifts, but the bottom line is that procedures like stem cell transplants and kidney transplants aren't even an option. To have a kidney transplant, Sicily would have to remain cancer free for two years before she could even be considered. Considering the amount of cancer affecting other organs, we could never reach that goal. A stem cell transplant at one time was thought to be an option, but anaplastic cells are no match even for something like that.
I've known for sometime, and I think it's been pretty clear through my writings that I've felt this coming. I guess you could say that would explain the dreams I've had about Sicily's funeral. God has just been preparing me.
Saying that I feel in my heart what we should do, I am actually going to ask Sicily her opinion in the matter. Does she want to continue the fight and try other drugs and visit other hospitals? Or does she want to stay at home and be loved on by family and friends and be made to feel comfortable until God is ready to take her to heaven?
I now know why children like Esther and Pablo came into our lives and left before her. They will be waiting for her to introduce her to Jesus. They will be ready to play with her...ride ponies in the sky and build enormous building out of Legos.
All I can say right now is that this is what it is. Everyone has been or will eventually be touched by death of someone that meant the world to them. It is the cycle of life and natures plan. I get it. I've gotten it for some time. The pain is still unbelievable and the tears will fall time and time again. But I know that the sun will shine again.
And most importantly, I know that because of my faith and my beliefs, I will get to see my daughter again. I know she is still here and that she is still full of life, but I think it's my duty to help you all see why and how we may be making this upcoming decision. I want peace and I want acceptance and I want just pure love to surround us while we continue on this road.
I just got off the phone with Patrick and told him the true feeling in my heart. We both have high hopes that she could at least make it until her 5th birthday on April 15th. If possible, that may be our goal. She deserves to be given a fifth birthday party!
I sat the other three kids down after school and broke the news to them that Sicily's cancer has gotten worse and that she may die. I put it in as gentle of words that I could find, but Elias immediately broke down and didn't stop sobbing for half an hour. I knew he would take it the hardest. Isabella just doesn't seem to grasp it and it took awhile for the emotions to hit Corinthian, but they did. He had tried for so long to stay strong and I told him he needed to let it all go. Please pray for Sicily's sibling. This will affect them for the rest of their lives! I don't want them to be haunted by any of this, that is one reason Patrick and I have always been forthcoming with them. We are a family and decisions like this affect us all.
Well, Aunt Bett and Aunt Val are on their way home with Sicily from the hospital while Patrick drops off a prescription for pain medicine. Pray for a peaceful night and that Sicily is comfortable and knows how many people love her!