Splitcoaststampers.com - the world's #1 papercrafting community
You're currently viewing Splitcoaststampers as a GUEST. We pride ourselves on being great hosts, but guests have limited access to some of our incredible artwork, our lively forums and other super cool features of the site! You can join our incredible papercrafting community at NO COST. So what are you waiting for?
Surgery is underway. I woke up around 3:30am and finally got up at 4:00 tired of battling insomnia and wrote a wonderful long journal entry. I hit send and it disappeared. I was so upset. So, I will make this quick and will try to recapture all my early morning thoughts later.
Sicily woke up completely fever free this morning by the grace of God. She was her usual laid back self this morning amazing the medical staff with her mature demeanor. I asked her as she laid back on the child sized gurney if she was happy. She nodded her head yes. So I said, "So am I!"
Surgery started a little later than expected (expected...we really have learned to let go of "expectations!") and could take between two to two and a half hours. We are relaxing in the waiting room with Patrick's sister, Teresa, and brother, Larry, and sister-in-law, Jane. Expecting a few more visitors soon.
I'll explain more things in detail later. Prayers are working and we feel each and every one of them.
This is Sicily's Aunt Bett and I'm happy to report that our brave Sicily's surgery went well and she's ready to move to a private room. Kerry will provide more information later. Thank you for the prayers and gum chewing, and please continue them for her recovery. Thank you!
Latest update for today
Wednesday, October 28, 2009 4:58 PM, CDT
Sorry for taking so long to jump on here to update. Sicily is resting comfortably in her little hospital bed. Her pain continues to be managed through her epidural. She only whimpers now and then as she is thirsty and wants ice water. Her bowels are silent at the moment so we cannot give her anything until the nurse hears some sounds through her stethoscope and trained ears…then the doctors may let her have some fluids. I remember trying to listen last year after Sicily’s surgeries but I could not make out anything. Pray Sicily’s body decides to kick start itself so she can get the water she so desires. It’s hard having to tell her she can’t have anything to drink when she is so used to me telling her at home to drink, drink, drink for the sake of her remaining kidney! Mommy is confusing sometimes.
Once again we were reunited with our surgeon and the anesthesiologist who took care of Sicily last year. Patrick and I feel like we have a strong relationship and bond with Dr. Puffinbarger…one of mutual respect. To pick one word, if possible, to describe her I would say she is a character. But I can’t stop there. She is approachable, and knowledgeable, and just easy to communicate with. She has a sense of humor and a true appreciation for what we parents are going through as she is a parent of young children herself.
After she visited with us and left to prepare for surgery, I was left feeling nothing but confidence and security putting my daughter’s life in her hands. Our anesthesiologist took the time to answer any and all questions and explained things to help us understand what would take place. When he was done, he squatted down beside Sicily who was sitting in a rocking chair and told her that he would take good care of her and he would make sure she would not feel any pain. She nodded her head at him and slapped him a five at his extended hand. It takes very special people to work with children. We’ve been so very blessed both in OKC and in Tulsa to have encountered such very special people.
While Sicily was in surgery, we enjoyed the company of family in the waiting room. We also were treated once again to a fabulous lunch from Pizza Hut by one of Patrick’s old KU fraternity brothers. We mucho appreciated that! One of the surgical nurses checked in via a phone call midway through surgery to let us know that things were progressing along well.
Close to the end of the procedure, we were told that Dr. Puff wanted to meet with us in one of the consultation rooms. We started to feel the panic creep into our bodies as she has always be-bopped into the waiting room after surgery to speak with us. Our minds started to worry as we headed down the hall hand in hand to meet with her. We stood outside the surgery recovery room door to wait for her, holding up the wall as if it was about to fall on top of us. I felt petrified for the first time in a long time.
After what felt like an eternity standing there as people passed back in forth in front of us, the door swung open and out marched Dr. Puff. Sort of shocked that we were standing there with ghostly white faces, she asked what we were doing out there. We replied that we were told to meet her in a consultation room but they were all full. She started down the hall to find all the rooms were occupied. We were under the assumption that she had bad news to report to us, but instead, she was just attempting to protect our privacy and didn’t know if we wanted all the ears in the waiting room to hear her report. Since our family members were the main occupants utilizing the room, we told her we wanted them to be able to listen in…the more ears the better.
Down the hall we continued and we sat in the corner ready to hang onto every word she said. For the most part, everything went good. After popping a tootsie roll in her mouth, she explained that the tumor, or tumors as it turned out to be, had grown to the sizes of a lemon and a lime and were piggy backing on one another (if I understood right). They were stuck to, but not exactly attached to (or entertwined with), the vena cava…one of the main and substantial veins in that area of the body. For that reason, a small portion of tumor was left behind as to not damage the vena cava. Dr. Puff did not want to risk it. The tumors remained encapsulated so she was able to remove the bulk of them.
As it turns out, our oncologist, Dr. Meyer, may have a gauge after all to observe the effectiveness of the chemo. Samples of the tumor tissue are packed in dry ice and paraffin and are on their way to Arizona as we speak. We have hopes of hearing their analysis within the next two weeks. Meanwhile we nurture our little brave soldier back to health. Dr. Puff also reported that Sicily’s bowels looked amazing for undergoing eleven radiation treatments and overcoming an intussusception. That was good news. Time will only tell if they will behave and do what they are supposed to do. Pray her body will cooperate.
The other great news was that we were able to bypass going to the PICU and were sent straight to the surgery recovery floor. “Yeah” for actually being able to potentially catch a few winks tonight…that is between IV pumps beeping and stat checks. We know the drill very well and will expect a third year medical student on their surgical rotation to check in on us around 5:00 am (or what feels like earlier) and then a parade of other doctors and students will march through shortly thereafter. It is an important part of the training of these future physicians and I will educate anyone who will stand there long enough to listen to me ramble about my daughter’s diagnosis and her journey thus far!
I will sign off for now. Just wanted to thank each and every one of you for the support through your actions, thoughts and prayers!
Sicily slept through the night and continues to be pain free thanks to the medical wonder called the epidural. I slept here and there in between beeps, but I feel pretty good this morning. My demeanor is so positive this morning as we are allowed to give Sicily little sips of water. When the surgery fellow visited this morning, she said she would write in the orders for her to be able to have some clear liquids. I was a little surprised when room service brought in a whole tray full of them…chicken broth, apple juice, coffee (coffee for a four-year-old?) but Sicily only wants water. What Sicily wants…Sicily is going to get.
When the nurse was in evaluating and checking her stats, I asked if she heard any bowels sounds? She gently pressed her stethoscope to Sicily’s lower abdomen and listened for awhile, then checked the other side. She looked at Sicily and said, “That was a big growl,” from her stomach and then looked at me and said, “I hear some movement.” I try to control my heart from beating too fast and getting myself too excited, but I don’t think anyone really knows, outside of the doctor’s who remember all too well what we went through last year, what this means. I sit and calmly watch as the nurse continues her work, even though I’m ready to jump up and do the happy dance.
My eyes fill with tears as I see my daughter lying in bed being completely compliant. When the nurse releases the child sized blood pressure cuff from the side rail of the bed with a rip of the Velcro, Sicily automatically raises her right arm up ready to be checked. She raises her arm again without even being asked when her temp needs to be checked. We laugh at how ornery she is at home, but when it really matters, she is so good. My mom said it makes her feel sorry for Sicily that much more to envision her this way, but I said, “It doesn’t make me pity her…it makes me proud of her!” And I am…I am soooo proud of her. She never ceases to amaze me. I love this little girl so much!!!
Today we will attempt to get her out of bed with the assistance of the physical therapists to have her sit in a chair and maybe walk a little…nothing too aggressive. If things should continue to progress as smoothly as they are, there is a chance that Sicily could be dismissed as early as Sunday. Patrick and I know better than to even plan or expect that to occur, but it is still nice to “think” about all of us going home as a family together on Sunday! Prayers are working so far. When we’ve needed things to happen, they’ve been happening!
I am still very nervous about the bit of tumor left behind on the vena cava, but God is in control and I have to believe that there is a greater good and a reason why some things are the way they are. We have more questions to go over with the doctors concerning this and will hopefully be able to communicate about them soon. It is to our understanding that the tumors were also pressing up against Sicily’s liver, but we are not sure if they were attached in any way or if anything was left there, as well. None-the-less, a base line CT scan will be performed in about two weeks and by then we should know or have somewhat of an idea what our course of action will be.
Patrick is here with us so I’m going to run back to my sister’s house to shower and clean up and then head back here. It’s hard to be separated from Sicily while she is in this state for any amount of time. It’s around 10:30 and I’m still in my pj’s. I know some parents around here “living” in the hospital stay in their night attire all day, and that’s just fine. It’s a mental thing for me to be dressed and slightly (very slightly) primped. It goes back to feeling “normal!” If I didn’t think I’d get confused with being a medical employee around here, I’d wear a pair of scrubs night and day. Looks comfy! ; )
Everyone have a wonderful day and I’ll do my best to keep the journal entries flowing!
Thursday, October 29, 2009 6:43 PM, CDT
Second update...just a quick one.
Sicily is still doing good. She started running a fever about an hour ago, so she is being watched closely. It was 102 and Tylenol has been administered. She is staying awake a little more now despite the side affect of drowsiness from the pain meds. She continues to take little sips of water now and then and blows bubbles to keep her lungs in good shape.
I'm getting ready to head to my sister's house for a good night sleep and it's daddy's turn to be on duty. I added a couple of new photos but wasn't able to put on the one I wanted as it was too big for this site. I will add them to Facebook. I will update in the morning how Sicily and daddy do during the night. Prayers are being felt and we love you all!
Just lost another post…gets very frustrating! I resigned myself to the fact that I will have to write in Microsoft word from now on and then copy and paste it to CaringBridge. A little more inconvenient, but the hospital connection keeps getting dropped (resulting in lost journal entries) so I better take my time and do this or suffer more lost posts!
I got back to the hospital around noon. Sicily continued to run a temp throughout the night, but it was not very high. Patrick and I are still concerned even though the doctors are not. She was starting to itch quite a bit, too, so they discontinued the main drug in her epidural, which can have the side affect of itchiness.
When I came in, she had only eaten about a bite of jello. I sat down and explained to her that if she did not eat some of what was being delivered to her room that they would have to find other ways to get her the nourishment her body needs. Her little mouth came open like a tiny bird waiting for mommy bird to feed her the worm. I was able to feed her almost the entire bowl of orange jello.
Soon after, she said she needed to use the bathroom. Aware of what that meant, we excitedly called the nurse in to help us get her to the bathroom. She still has a foley so we anxiously awaited for something else to happen. And it did. SICILY’S PLUMBING WORKS PERFECTLY…every bit of it!!! We can’t even begin to explain how awesome a feat this is compared to what she went through last year. Sicily looks at her mommy and daddy as if we are a couple of dorks getting so excited over this…but we are happy to be dorks and have a reason to do so! She is kicking back in bed relaxing and watching the movie, “Robots.” She looked up at daddy and said, “Robots can’t really talk.” She’s just a little too smart sometimes! ; )
I will say that all this is truly the result of answered prayers. There is no denying it. We feel extremely blessed and are so very grateful. My heart is full right now. Even driving to the hospital before lunch I had the feeling that today was going to be good, despite already knowing that Sicily still had a bit of a fever (which has now broken).
I stopped at an Arby’s restaurant and bought a turkey sandwich for my lunch. I pulled back onto the busy street and headed towards the interstate. Like so many times before, I stopped right by a corner where a homeless man was standing holding his little card board sign with a pair of dingy hands. Written in black marker the first and only word I saw was, “Hungry.” Without thinking twice, the thought popped in my head, “I can fix that.” I rolled down my passenger window and handed him my lunch. He sincerely thanked me. The light turned green and I continued on my way. I don’t tell this story for any reason other than to share what was going through my head. I can’t help but think every time I encounter such a human being, “What would Jesus do?” I have the luxury and ability to go anywhere I want and get whatever I want to eat. Blessings should be shared! Judgements should not be passed…it’s not our place to do so. I hope Isabella would be proud of her mom for following her lead, once again. ; ) (I posted once about a similar situation where my eleven-year-old daughter wanted me to help a homeless person. She influenced me to pay more attention to those in need around us.)
We can’t wait until tomorrow morning when we get to see and hug our other three kiddos again. They are missed but have been taken care of so well. They’ve truly enjoyed their time with Aunt Bett and Grandma Zeka. We can’t thank them enough.
Thank you all for praying, caring, and staying with us on this ride. I love being able to witness the results of human kindness and compassion. I am so lucky!
Just a quick little update. Sicily is doing really good and is on schedule, according to the doctors, to be released tomorrow. YEAH! She had both her epidural and her foley removed this morning so we will pray she remains comfortable without much added pain meds. She is definitely ready to go home. In the middle of the night she told the nurse about her kitty, Stowie. Aunt Bett reported that Stowie wondered around the house as if looking for Sicily and slept on her bed during the day. I think it's safe to say they miss each other.
I'm not sure what our plans are for this evening with the other three kids. I imagine we will try to go trick-or-treating somewhere. It's kind of funny having Halloween on a Saturday...it doesn't really feel like it. I took the older three kids out for lunch and then we ran a few errands. While in Old Navy, an employee asked Isabella if she was dressed up for Halloween (she looked like a tween rocker, but it was her normal dress) and we replied, "Not really." The employee said, "If she is, you get 15% off your purchase." Okay...yes she is. ; ) Can't argue with that!
Everyone have a safe and fun Halloween holiday. I'll report when we get home tomorrow. Continue to pray it all goes smoothly!
Sunday, November 1, 2009 4:05 PM, CST
We are home now and Sicily is doing pretty good. She’s adjusting and so shall we all. She’s very happy to be here and to be reunited with Stowie the kitty. I just gave her a dose of oral pain medicine and she may get drowsy here in a bit. Pathology came back reporting the recurrence is anaplastic Wilm’s, again. If they would have told me any different, I would have requested a second opinion. We had already resigned ourselves to the fact that it would be unfavorable, so we were not shocked at all. We just nod our heads and say, “We knew it!”
The three older kids and I had fun going trick or treating last night with their cousins. It was a good distraction from life at hand. A new storm is brewing on the horizon…in fact, we already feel the winds picking up and drops of rain falling on our heads. We’re scrambling for the umbrellas hoping to somehow find a way to protect ourselves.
We have been observing Isabella lately and her eating and drinking habits. She is a tall bean poll but eats like a lineman for a pro football team. We kidded her that she had two hollow legs because we could not figure out where she put all she consumed. Her aunt and grandma, while caring for her in our absence, noticed she got up several times during the night to use the bathroom. They became very concerned knowing her other habits and that’s when the word “diabetes” creeped into our vocabulary.
One of the many, many advantages of staying with your brother-in-law who is a pediatrician is the ability to have simple tests run at a moments notice. John tested Isabella’s urine with a little glucose dip stick test and the color that we hoped would stay green, turned dark brown…meaning her glucose level is very high. He then did a finger prick to check her blood sugar and the number popped up at 278 after fasting all night…normal should’ve been under 100. Isabella appears to be Type 1 diabetic.
As if our lives haven’t been turned upside down enough, we are not only upside down on this ride, but we are spinning uncontrollably. We are not “out of control” but I’m getting pretty darn dizzy about now and really wish this ride would slow down and go a different direction! How much does God think we can handle?
I will be trying to get Isabella into a pediatric endocrinologist to figure out our next step. We’ve briefly explained to her what her body is doing, but I don’t think she has grasps what it all means. John took the kids out to eat for breakfast and the first thing she said was, “I don’t know what I can eat!” If anyone could adjust to this, I think Isabella can! Elias came and told me that Isabella has diabetes. Guess he did not know I was already in the loop. I said, “Do you know what that means?” And he replied, “she has to go to the bathroom a lot?” It will be an educational lesson for us all. We’ll all learn to adapt and try to make the best of this “new” addition to our health regime!
Latest update - thanks so much for your prayers for Sicily - please do not forget Isabella who just was diagnosed with diabetes.
Monday, November 2, 2009 1:02 PM, CST
We are doing good. Sicily seems to be managing pain pretty much on her own. I've given her a couple of doses of pain medication, but the last one was at 2:00am as she seemed to be a little uncomfortable and restless. She refused any this morning. Even though she is only four, I am trusting her to let me know. I ask often if she hurts, and she replies, “No.” Yesterday, before we left OKC, when asked that question she replied, as she held up her index finger and her thumb pressed together, “Just a tiny bit.”
On the way home I kidded around with her telling her that Stowie, our kitty, has probably wondered where she was. Her reply to that, in a very matter-of-fact tone of voice was, “Well, I was in the hospital.” Silly cat... doesn't she keep up with things?
We've already had a pretty busy morning. We took Isabella to our pediatrician to get a referral to the pediatric endocrinologist...they are a referral only practice. I'm planning on calling here pretty quickly to see how soon they can see Isabella. I'm ready to learn how to help my daughter. I'm anxious to find ways of being creative and having fun with her “new” life status. She loves to cook and help in the kitchen. Because of her health, she may take a more active role in the meal planning. I recently bought a cute little black and white apron to give her as a gift sometime. I've decided I'm going to add iron on letters that say, “Diabetic Dive” to it and give it to her for her twelfth birthday this Saturday (still can't believe she will be twelve!)
I am also waiting for a return phone call from Dr. Meyer's office to learn what our next step with Sicily will be. We found out last Friday that the tissue samples had not been sent to Arizona, yet...hopefully today. I guess the OKC pathologist wanted to make sure he had what he needed to complete his part of the process before sending it off. I continue to be very anxious about getting all of this done in a timely matter knowing that there is still cancer existing in my little girl's body! Who knows what it could do in another two weeks time. We already saw the growth from her CT scan to her surgery...pretty rapid. But I will continue living and breathing each day! We will get through it...ALL of it!
All we can ask is for prayers to continue, and we have no doubt that they will. Thank you, everyone!
Sicily continues to recover. Eating is a big issue with her right now (between the both of us) and her little body is showing the signs of her decreased appetite. Her face is thinner and her little torso is very skinny. I want to beef her up a little before the chemo begins.
By late afternoon yesterday I was spiraling in a downward rotation after spending a good part of my time after lunch on the phone trying to make contact with Sicily's oncologist and the endocrinologist we need to have Isabella see. Didn't get too much accomplished. Then I began reading over literature about Type I diabetes and I just lost it. What does a girl do when she's swimming in her own pool of tears? She calls her mom! Of course my sweet mom feels helpless in helping me as she is recovering from a fractured shoulder and a fractured knee, but all I really needed was to hear her voice and for her to let me vent, which she lets me do any time!!! It helped!
As we were finishing up our conversation, my phone beeped to let me know another call was coming through. I looked at the little digital screen on the phone receiver to see the name of our priest, Father Joe. I clicked over and heard him ask if it was okay for him to come pay us a visit? Wow, talk about Divine intervention! There was absolutely no way he knew the state I was in at that moment. I cried, and God consoled me! The timing was impeccable! Father Joe came to check on Sicily and to bless Isabella with the anointing of the sick before he leaves for two and a half weeks on a pilgrimage to the Holy land. He came bearing gifts of sweets...candy bars for Corinthian, Elias, and Sicily...and for Isabella, three bags of sugar free Russell Stovers candy. Isabella lit up like a Christmas tree!
As he sat on the couch preparing to anoint Isabella, Sicily offered to hold the lid to the little gold container of holy oil. She's an old hat at being anointed since she has done so twice, so she was happy to be of assistance! Another neat twist of this event is that this is the oil that Sicily helped carry up on Holy Thursday. Who knew two of our children would be in need of it this year? Pretty amazing.
My evening only improved thanks to the pure and innocent antics of our son Elias. In Isabella's presence, he made many comments on how he was going to start taking better care of himself. He asked if he could eat sugar free items, as well, and proceeded to do jumping jacks in the living room. When this kid gets an idea in his head, he goes full throttle. As Patrick tucked him into bed, Elias answered, “Yes sir,” when Patrick instructed him to do something. Patrick asked him why he said that, and his comment was, “I'm just going to try to be a better kid.” I laugh through my tears of pride. He is such a sweet kid! He asked this morning which kind of bread is better, white or wheat? When I answered with wheat, he said he's going to eat that from now on. Guess I'd better start making out my grocery list! ; )
Through all the thoughts my head has had to process the past several weeks, and primarily this past weekend, it came to me how incredible God's timing is. At first, it was a question of, “You've go to be kidding me? Both of our daughter's are in dire need of medical attention at the same time?” But then it hit me how truly incredible God's timing really is! Had Sicily not relapsed so soon and had we not needed Aunt Betty Kay and Grandma Zeka to care for our other three children (and for them to be aware of the “signs” Isabella was exhibiting), how long would have Isabella's condition gone unnoticed and untreated? It scares me to think how long and how dangerous it would have been. So, you see, God does things on His time and in His way for a reason. Yes, this is still going to be quite an adjustment and at times a mind boggling struggle, but He has also blessed us with all of YOU...and we know we are not doing this alone! Amazing, isn't it? How blessed are we?
As I'm typing this and the phone is practically glued to my hip, it rings with a call from the endocrinologist's office. I will be taking Isabella in tomorrow morning and Thursday morning from 8:00 to noon for a diabetic evaluation and education. We are ready. I am definitely ready and will dig out my thinking cap and dust it off as “school is in session!” I wanted to also share a little story about Isabella yesterday. When I picked her up from school to take her to the pediatrician, she told me that she told one of her friends in choir that she just found out she is diabetic. Guess what her friend said, “Me, too!” Is that not another proof of how God takes care of His children?
I will sign off for now. I'm expecting a call from Dr. Meyer, our oncologist, sometime today to discuss what he thinks Sicily's next step should be until we get back the molecular profiling analysis, so I will jump back on here and report if that happens.
When I was in high school, I would occasionally walk down the street to eat lunch at a nearby hospital cafeteria. For some reason, I enjoyed being in that atmosphere and I even found the smell somehow soothing (crazy, I know). I thought briefly for awhile that I might want to go into nursing, but dismissed it not long after deciding I didn't think I could “poke” people with needles. I learned to give myself allergy shots shortly after Corinthian was born and decided if I could give myself shots, surely I could do others...having no inclination that it would be to two of our children. I'm starting to get pretty good with needles, even though I wish I didn't have to be!
I woke up this morning not feeling as enthusiastic as I felt about all this yesterday. Of course, I am not a morning person...so I don't wake up enthusiastically period! Isabella had to fast and I know that was hard on her. We navigated our way to yet another doctor's office on the campus of OU's Schusterman Clinic and I found where we needed to be right off the bat. I'm usually directionally challenged, but I guess I'm getting pretty good at finding doctor's offices, as well! I have to say after spending four hours listening, discussing and practicing what has to be done to Isabella for the rest of her life, I once again felt empowered. There is still so much yet to learn and absorb, but I can do this. And in time, so will Isabella (there is so much measuring and calculating..I feel like I need to transform my kitchen counter into a lab until I grasp it all!).
I was so very proud of how Isabella handled herself and her acceptance of what has to be done for the sake of her health. God was very generous when He blessed her with certain traits. She hasn't exhibited any signs of self-pity and she just nods her head when it's time to do something. I will be very anxious to get her empowered to feel she can do a lot of this on her own, only because of what lies ahead with Sicily's treatment...which, by the way, Dr. Meyer never called yesterday...GRRRR! We can't wait much longer before we take some sort of action with her treatment. At least something to hold us over until the analysis comes back from Arizona!
All in all, I have come to the conclusion that God really doesn't give us more than we can handle. But as Mother Teresa said, “I just wish He didn't trust me so much!” Even Mother Teresa knew she had limits. I feel very fortunate that I haven't met mine yet, but, “PS God...I'm not far!” I think I'd like to coast on this level for awhile! Still lots and lots of adjusting to do. God is still connecting us with people who are there for us if we need them...members of our wonderful church...neighbors who we haven't had a chance to really get to know. We will be cashing in on those offers. We will have to!
I will continue to live day by day and attempt not to let myself get too anxious over tomorrow. It isn't here yet and I don't have control over it anyway...the Man upstairs is still steering the boat through the treacherous waters. I have my life preserver on and will hold on tight. It reminds me of our little trip to Branson and how I ended up getting on a ride with the boys. As I was strapped into the “ship” I sat there thinking to myself, “Why am I doing this? I'm too old for this! Why am my subjecting myself to this scary ride?” After the ship started slowly swinging back and forth, the tickle in my tummy was so strong and my whole body was stiff. Then this wave came over me and made me relax and even though I still felt that strong internal tickle, I now was completely enjoying it and I didn't want the ride to stop. I even threw my hands up in the air (and waved them like I just don't care...sorry!). ; ) That's the way I feel like our lives are right now. It's a scary ride, but if I can make myself relax, and laugh at the tickle, I can't help but enjoy it...even through all the fear!
I will update when or “IF” we get to talk to Dr. Meyer. Please pray he doesn't leave us hanging too much longer. I hate when my anxiety turns to anger. I try not to let it happen, but it does anyway. The fear factor, in this case, is really really strong! Love you all and keep up the gum chewing prayers. “I'm living proof!”
Whew...what a day! Just now getting a chance to sit down and collect my thoughts. I wish I had a USB port in my head so I could just plug myself into the computer and just “think” all my random mental ramblings into a journal entry! That might be a dangerous tool in the wrong hands, but boy, it would sure make life a little easier for me. “Easy” is not a word used in our reality these days. I will try to substitute it with the word, “Manageable.”
Sicily is improving and feeling more like herself everyday! Isabella and I had another morning of diabetes education and our heads are still swimming. I wish that Patrick would've been able to attend these classes with us, but it just wasn't possible. I hope I can explain everything to him in a way that will make sense. He's going to have to learn fast as I will be heading to OKC next Monday night with Sicily.
Patrick was able to finally speak with Dr. Meyer and he squeezed us in early next Tuesday morning for an appointment and a baseline CT scan. I will take Sicily by myself. Patrick also followed up with CARIUS, the molecular profiling institute in Arizona, and they are working on her case right now and may have some results by next Thursday. PRAY a chemo will be found that will conquer this nasty stuff for good!!!
We do know that radiation will once again be part of Sicily's treatment and we will do that in OKC, like before. Treatments will be done in Tulsa, again, like before. It's more crucial now that we stay close to home so that Isabella can be monitored by both Patrick and I. I will be meeting with her school counselor and nurse tomorrow morning to deliver Isabella's doctors orders and to discuss how things work. I know Isabella will be safe at school. There is just a lot of prep work and a lot of things to keep track of (at least for me) and I hope she transitions easily. I made three trips to Wal-Mart today to fill her EIGHT prescriptions. OUCH! I will return tomorrow as they did not have two of them in stock. I definitely want to look into mail order prescription refills so I can have three months supply on hand. I like to be prepared. I hate to run out of toothpaste, toilet paper and now, diabetic supplies! ; ) I'll get it figured out eventually!
I've got to go calculate Isabella's carbs for breakfast. I have her lunch all planned, counted and ready. Wish us luck tomorrow! I will also attempt to make Isabella her birthday cake. I still can't believe she will be twelve on Saturday! Where does the time go?
SICILY IS BACK! The old, pre-surgery, spunky little gal has resurfaced. She is boisterous and ornery. She has a wiggle in her walk and even though she is still a bit guarded with her body movements due to her abdominal incision, the pounce in her step is slowly returning, as well. When she smiles her whole face joins in...especially her eyes. It was like literally over night she reappeared. Makes my heart so happy! She's napping on the couch while the Christmas music plays in the background. I have the radio in the minivan also tuned into the Christmas music station and as Isabella and I drove to the diabetic clinic yesterday morning, she commented, “I just love this music...it makes me happy, even though I have to go to the doctor!” She's my daughter!
I met with Isabella's school counselor and nurse this morning to go over her needs. I can honestly say I left there feeling Isabella was in the safest of hands! She's probably safer at school than she is at home because there will always be someone around to observe her. At home, if she hangs out in her room, I'm going to want to check on her often. I'm sure the anxiety of that will ease as we get more used to this new way of life, but I am a bit on the over-protective side!
The boys are doing pretty good. Elias has been complaining of his leg hurting so we're keeping an eye on that. He fell when we were trick-or-treating last Saturday night so I don't know if he bruised something or what. I watched him limp out the door on his way to wait for the bus this morning, but once he got to the curb, he ran across the street and ended up riding his buddies scooter around the driveway. Can't hurt him too much. If he continues to complain or feels worse by Sunday, we'll run him to the doctor. I'm starting to get a little paranoid and the hypochondriac in me is starting to raise one eye brow. One could surely assume that nothing is seriously wrong, but I don't go down that path anymore...better safe than sorry (or shocked!).
We will be heading to Wellington for a quick visit this weekend. That is what Isabella wants to do for her birthday. We are still on the guarded side with Sicily and her recovery and want to protect her health as much as we can considering the journey ahead. I hope everyone understands. We are not making any specific plans. We would love to see and hug so many people, but this will be a quick trip. We're going to focus on making Isabella's twelfth birthday a special one.
One last thing I wanted to touch on. I still do not know how I am managing as well as I am. I truly am surprising myself! ; ) I hope this coping mechanism, whatever it is, continues! But if I look deep and analyze this (like I love to do), what I figured out is the support we are receiving from so many is the key to my strength, personally. The emails and cards and phone calls are my spinach, if I were Popeye! Honestly! If you can take yourself back and visualize those old cartoons where Popeye, at the hands of his adversary, Bluto, in need of desperate strength, he pops open a can of spinach...pours it down his throat...and got his game into action. That's how I feel when I read emails or guest book entries on CaringBridge. Makes me ready to go in and fight the bad guy! ; )
I better go wrap some birthday gifts. Everyone have a wonderful weekend. I promise we will! God bless you all!
Sorry I haven't had time to update lately...go figure. I will try to make this quick. We had a wonderful weekend in Wellington celebrating Isabella's birthday. She felt very special! Sicily is doing great; almost feeling too good. We had to stop her from pulling her little baby cousin around the backyard in a wagon. Her little surgery recovering body wasn't supposed to be doing such an activity. Hard for her strong little mind to comprehend that!
Sicily and I will be leaving in the next hour or so to head to OKC. We are to arrive at radiology by 8:00 tomorrow morning to get her going on her contrast needed for the CT scan. At 8:30 we are to meet with Dr. Meyer. CT is around 10:30. When the scan is complete, we will grab a bite of lunch (since she can't eat anything until after) and head to Dr. Syzek's office to talk about the radiation plan. I have no idea how much radiation she will need or when it will begin.
I'm packing enough for Sicily and I to be gone a couple of days, just in case they want to start right away! I am stressed but still "managing" okay. I just don't feel like I've had adequate time to go over everything with Patrick and Corinthian enough concerning Isabella's new routine. I know they will do fine...it's just natural for a mother to worry! It's all still so new and I hate having to leave her! But I also am the one who has done most of the research for Sicily's needs and feel that I must be the one to take her to OKC. I have things mapped or planned out in my head of how to juggle it all, but will it work?
Elias still has to be taken into the ENT doctor's office for his allergy shot once a week, and this week the nurse is supposed to let me bring home supplies to start doing it here. I'm hoping I can take Elias in on Wednesday or Friday morning to get that all settled. Corinthian has an orthodontist appointment for an adjustment on Thursday. I really could use a cloning machine right now. I want to be the one to take them to all these appointments and be the one to communicate with all the doctors, but I can't be more than one place at a time! Again...we will manage.
Please pray that everything goes smoothly this week and we are able to conquer our objectives. We have hopes (a scary thing to have right now) of possibly hearing news about the molecular profiling by Thursday. I continue to take my deep breathes and exhale slowly. I'm still smiling and laughing. If I don't laugh, I will cry...and I will do that if I need to! The Christmas music continues to play non-stop! It's about the only thing really keeping me sane right now!
I will try to update tomorrow when or if I find out anything. Chew, chew, chew!!!
I sincerely apologize for not journaling sooner. I have pretty much been going ninety to nothing with all the things going on around here.
I don't have a lot of news to report on Sicily other than she is doing really good and I even took her to school today. Oh happy day! Does she ever love going to school!
Yesterday we spent a long day in OKC hopping from place to place, but everything went smoothly. We started out the day by reporting to radiology at the Children's Hospital and having Sicily start the hour and a half process of drinking red kool-aide flavored (at least that's what the bottle is labeled) contrast to prepare her for the CT scan. Before her scan, we were able to sit down with Dr. Meyer for a good length of time and discuss a contingent plan of treatment. We say contingent as the results of the molecular profiling, which are complete, were to be faxed to Dr. Meyer today or tomorrow. I have no idea what they say. We needed to decide on a course of action as if we did not do any testing, just in case the results don't give us any usable information.
Dr. Meyer wants to use a regimen called ICE – Ifosfamide, Carboplatin, and Etoposide. I'm familiar with the name of this treatment as many children I have followed through an online support group have used it. It is not set in stone, naturally, as we will want to factor in what the molecular testing reports, if anything. I'm just happy to have a plan of some sort! One of the key questions right now is whether to have radiation therapy right off the bat, like we did last time, or wait a while to do it. It will be included as part of Sicily's treatment, but since there is residual tissue left behind (a “tiny bit of cancer,” as Sicily describes it), by with holding the radiation we can possible gauge whether or not the chemo she receives is working. That is a decision I am putting on Dr. Meyer and Dr. Syzek to hash out. I'm okay either way they decide to go about this.
We also should be doing “something” by next week, be it radiation, chemo or both. I have to say right now that Dr. Syzek is numeral uno in my book as far as doctors go. She is both an amazing physician as well as an amazing compassionate and caring human being. She goes above and beyond in her actions. She and Dr. Puffinbarger are two of my favorite people right now! ; )
Yesterday proved to be a fulfilling day for my heart, as well. While at the pediatric hem/onc clinic, Sicily and I were able to run into our cancer friends, Morgan and her mom, as well as the family of a little boy battling Wilm's with whom we were able to meet while in the hospital together recovering from surgery. I did not get to talk to Nathan's parents for very long before they were called back to an exam room, but as they left, I heard someone behind me say my name. I turned around to find myself sharing the back of a couch with Stacie Caywood, the mother of a precious little guy named Cash that was diagnosed just a few months ago with another form of kidney cancer. They had initially thought (and hoped) it was Wilm's but it turned out to be another type. Cash and his family live near my hometown of Enid, Oklahoma. We have a family/friend connection and it was so wonderful to get to meet and see baby Cash in person, as well as his family. It was quite a whirlwind of a day, but a good one!
I am happy to report that Isabella is adjusting very well to her circumstances. She is independent in testing her blood sugar levels four to five times a day, and has even started to give herself insulin injections in her tummy. I did not expect to be this far along so soon. She is amazing me. Counting carbs and calculating insulin is work, but it is already starting to get easier and I know it will become second nature to me in no time.
Last night I thought I would just pose the question to her if she wanted to try and giver herself a shot to see how it would feel. She answered my question with another question...”Do you want me to?” I replied, “Only if you want to.” To my surprise, she did. I was so happy to see her confront that hurdle of fear of giving herself a shot in the stomach. I think she surprised herself that she could do it. I don't see her doing it all the time yet, and I don't want her to. She still needs a lot of supervision as she accidentally pushed the button once on the insulin pen before she had the needle all the way punctured through her skin. It's dangerous not knowing if she received her correct dose of medicine. I will continue to encourage her and stress that she takes her time.
She came home from school a little upset yesterday because someone asked her what the zip lock baggie full of glucose tablets were for. Instead of using the opportunity to explain her condition, it only upset her and she said she did not answer the persons question. I know it is still hard for her to understand. I'm trying to teach her to embrace her diabetes and feel comfortable talking about it with others. I'm not pushing her at all...I just pray that in time she will have the confidence to explain it to others!
It was so great to be able to take Sicily to school today. I'm still very much on the cautious side, and may not have considered letting her go, but she did get the H1N1 vaccine yesterday and I just want to make an attempt to balance her quality of life with everything else that is going on. She very proudly showed everyone, and I mean everyone...whether they wanted to see it or not...her abdomen and the three inch scar that has been used three times. I love her scar, as well. I like to think of it as her “re-birth mark.” Each time it was been accessed, she gets another chance at life. She astonished me yesterday when she asked, “Can my tummy open up?” My only thought and reply was, “When the surgeon wants it to!” How is a parent supposed to answer that question?
The boys, including Patrick, are all doing well. I am so glad they are just going with the flow since so much attention is being garnished on the girls. My hopes are that they are relieved and appreciative for their good health. Elias still is under watch with his allergy shots and tubes in his ears, but that is so manageable. I say that, too, about Isabella's diabetes. At least with it, we feel like we are mostly in control...we can help her with her health situation. It's a foreign feeling to have when dealing with Sicily's cancer. But in our hearts, we are doing everything we can. And that's all we can expect of ourselves!
I better hit the hay and attempt some sleep so I can pay attention to the life around us tomorrow! If I'm tired, I might miss out on something. I plan on taking Sicily to school again. May be the last time for awhile! I will journal if I receive a call or any news after the meeting of the minds tomorrow (a conference is supposed to take place sometime tomorrow about Sicily's future!) Please pray for the doctor's and the decisions they will be making!
This has become about the only time I have a chance to get to the computer for any decent stretch of time. Plus, I have no news as of yet, so I am without a sense of urgency. There is a calming and relaxing notion that I don't have to have anything to write about...I can sit down and type just about anything that comes to mind on here and feel like a weight has been lifted. That's why I refer to this as my therapy...and all of you are still my therapists...pro bono, of course! ; )
Sicily thoroughly enjoyed another fabulous day at preschool. I've let go of the sadness that hung over me for quite sometime about the reality that she won't be there very often. Patrick and I agree on the idea of trying to preserve Sicily's quality of life as she heads into battle once again. The safest thing to do would be to keep her home all the time. School makes her happy and if she is happy, maybe her body will work overtime to handle what is about to be thrown at her. She has had both the seasonal flu vaccine as well as the H1N1 and I know that doesn't mean she if fully protected, but it does afford us a little piece of mind. We will take each day as it comes and make decisions daily about school and other activities.
Something else I have learned to let go of, and did it quite some time ago, was my self pity. It was serving me no purpose and made life more difficult to live, for all of us! So I ask for no pity to be directed our way! Pity is pathetic! I don't want pity...I want PRAYERS. Prayers work and they can be done by anyone and everyone...here, there and everywhere (you can thank The Grinch Who Stole Christmas for that one...Sicily's movie choice before school today)! Feeling sorry for one's self is not going to produce any positive results. We still just have way too much to be thankful for.
Many days (most, really) I still feel guilty for all the attention we have received due to the medical situations our children are in. We are just doing the best we can. Most people don't realize or even know their own strength and resolve until they are put to the test. I wouldn't wish for anyone to be tested the way we have been, but I can honestly say that my heart is at peace. I've come a long way. I did not start out feeling like this.
I'm still scared and fear is still laying patiently, hiding in my shadow, ready to pounce on me if I stop and think for too long about what lies ahead! But I know it's there so I do things to not let it catch up with me! Staying busy really helps. Focusing on the needs of others also helps! Busy for me these days revolves being in the kitchen pushing number buttons on a calculator trying to figure out the carbs in every morsel and bite that goes in Isabella's mouth. It is actually getting to be habit already and I'm not worried about it as much anymore ("as much!").
With Isabella's diabetes, we have so much of the control over the maintenance of her health. It's work to stay on top of things...counting all her carbs and making sure we're giving the right amounts of insulin...but WE get to have our hands on the wheel! We're the chauffeurs of this vehicle! With Sicily's cancer, we don't even know where the steering wheel is. Most of the time our eyes are covered by a blind fold and we've been, on occasion, able to lift it over one eye for brief periods just to look around and try to get our bearings, but then it slips back down into place and we are left without a vision of the clear path to follow. We hold onto the guard rail and pray we reach our destination safely.
I'm getting good at squinting my eyes and trying to make out the fuzzy road ahead, but I mainly rely on others to hold my hand and lead the way. Those “others” were supposed to meet today and discuss which adventure we will soon be embarking on. I'm not nervous or anxious, yet. Maybe I won't be at all. God is listening to all the prayer requests for us to stay strong! We've waited this long, what's a little more time? I do hope someone notifies us tomorrow. I am a planner and like to have a little jump start on what will be happening (i.e. - plenty of packing time)! The prayers for patience are being answered, as well! At least in part concerning the medical information... otherwise, I still get to be a pretty grumpy momma bear by evening around the house. Another one of my "works in progress!" I should have a shirt that says that, but if anyone were to ask, "What work is in progress?" I'd have to answer, "All of it!" ; )
I'm about ready to prop my eyelids open with tooth picks so I'd better wrap this up for now. Elias would take me seriously if he heard me say that and would want to see me do it! No joke! And I wouldn't put it past him to try it on himself. I have to be careful with my analogies sometimes! Ideas pop into his cute little head and he wants a visual aide to go along with the words. Funny boy!
I will hop on here as soon as I hear something. Pray it's sooner other than later!
We had a good but busy weekend, as usual. Seems like life is in high gear right now and there isn't much time to relax. I'm sure we'll get a chance to do that once Sicily's inpatient chemo treatments begin.
I did get to talk to Dr. Meyer on Friday by early evening. I'm still trying to process all that he said so I will try to explain it without sounding too complicated. I won't pretend to understand everything. In fact, I understand just the bare minimum, but enough to feel I can securely and comfortably assist in the decision making. The CT performed last Tuesday showed there is a “fair amount of tumor in the belly”...Dr. Meyer's exact words. I was feverishly trying to take notes as he spoke and then I couldn't find were I'd left them over the weekend...one reason for not updating sooner. I didn't want to go on memory alone because my memory often fails me. It's not completely accurate and I don't have an instant replay button. Another one of those handy features I wish my brain came equipped with!
The area that contains residual tissue (cancer left behind) is behind the liver and is pushing on the vena cava. Dr. Meyer also explained that something appeared to show up on the lower front to the right lung. He wasn't over concerned, yet, as this could be a surgical thing (whatever that means) with the lung and they will just monitor it. It's hard to mentally file that away and not think about it, but we've had to do that as a whole with the cancer still growing inside Sicily's tummy ever since we were told that some was left behind. If we sit and think about it too long, we get sick at our stomachs! So we just don't! We are very anxious to get started on treatment, but we are not allowed the luxury of saying when that may occur.
I have a new mantra, if you will...”But there for the grace of God go I.” This phrase keeps popping in my head over and over again for some reason, so I did a Google search to see what exactly it means. It is believed to be a quote made by John Bradford, as servant of God, back sometime in the sixteenth century. Imprisoned for a trivial reason, he observed a criminal on his way to execution and made the statement, “There but for the grace of God, goes John Bradford.” He later was burned at the stake and deemed a martyr. My personal interpretation is that it simply means others have it worse than what we do. It struck me as kind of funny as Patrick made the comment to me several times as we embarked on this journey again, how we still have “it” so much better than a lot of folks do. Other's have it better than we do, too, but we tend to look at our lives as “the glass half full!” I just wanted to share that as one of my simple minded epiphanies. I do love it when those thoughts come to my head and I understand “why” they do!
Okay, back to my conversation with Dr. Meyer. The results that came back from CARIUS Molecular Profiling Institute...three pages worth, apparently. Before I continue, I must explain that a clinical correlation response came back for the success of this type of testing at 30%. What that means is that thirty percent of the patients that have used the treatments found to be beneficial to their particular cancer have seen results. Just because the test analysis reports drugs that could be clinically beneficial and those that lack clinical benefit, does not mean that one will definitely work or that another should be totally ignored. This is where it gets a little confusing and I will try my best to make it as simple as possible.
Four drugs came back with a positive biomarker stain that “might” be useful. Doxorubicin, which Sicily has previously had a pretty high dose of and which she can only have so much of in her lifetime due to its harmful affects on her heart. Two other drugs, which are totally foreign to me as well as have not been studied or used in any previous Wilm's trials (but I will still keep them on the list). And finally, Irinotecan, a drug I am briefly familiar with was on the list. It is a cousin to Topotecan, which is fairly common in use with recurrent Wilm's tumors, usually to the lungs.
One drug that was listed as “lack of clinical benefit” was Etoposide. Etoposide happens to be the “E” in the ICE protocol we are planning on using. ICE is the combination of Ifosfamide, Carboplatin and Etoposide. When I asked about the possibility of leaving it out, Dr. Meyer explained it to me this way...alone, Etoposide and Carboplatin did not show any major responses in Wilm's Tumor studies of the past. Together, along with the Ifosfamide, results were seen. It is a chemical thing and we can't for sure know which part of which drug is doing the job. One drug may not work alone, but combined with others, it does.
Confusing, I know...especially to my non-scientific mind! But I think I'm grasping the basic jist of it all! Again, enough for me to understand what needs to be done and why! We will still be doing radiation, but not simultaneously with the chemo. Dr. Meyer wants to get Sicily started right away and then scan her after a cycle or two to see if her cancer is responding. I'm not sure how long a cycle is in her case. I'm guessing a month or two of treatment. Her treatments will be inpatient hospital stays of three to four days every third week; pretty similar to before. If desired results are not achieved with ICE, we have the option of using the Irinotecan.
This is the recommendation of the “minds” and I feel comfortable with it. I still have questions and it may just take time until I get some answers, but the most important task at hand is to start something NOW! I'm awaiting a call back from the oncology clinic here to see when we can be admitted. I told them I would be ready bright and early tomorrow morning. If they told me we could come in this afternoon, I'd be there...but things usually don't work that fast!
I think that about covers most of it in a big nutshell. We are all still doing good, under the circumstances or not! Life marches on! We did take Sicily trick or treating to a few neighbors houses on Friday night. That really stirred some emotions in me and I had to come home and cry to Patrick in the closet. Even though we try to keep everything out in the open and not hide things from the kids, I still don't want them to be alarmed when I have one of my moments. They are well aware of what is going on and what our future may or may not entail!
I was also going to quickly mention that we don't really have a time line as to how long Sicily's treatment will be. With cancer left behind after a surgery, the goal is to rid the body of it for as long as it takes to do so. Consideration has to be given for how the body tolerates the treatment, as well. Sometimes the cure is so toxic it has to be halted. Please pray that Sicily, once again, handles these potent drugs as well as she did the first time and that we are able to successfully rid her body once and for all of this hideous parasite! Please continue to pray for our strength. We still have it and want to hold onto it as long as possible!
Last, but not least, Isabella is still adjusting to her diabetes routine, as are we all. Time away from her while inpatient with Sicily will still cause me stress as I hope and pray I covered all the bases with Patrick and Corinthian, who will assist in her care. I'm putting on my clown outfit and getting ready to start my juggling act...with a big red smile painted on my face! ; )
Thanks for the continued prayers and support. We need them now more than ever!!! Love to you all!
Monday, November 16, 2009 6:43 PM, CST
Second entry for today...just a quick note. Sicily will go inpatient on Wednesday for three plus days to start chemo. Wednesday is also Corinthian's fourteenth birthday. We were in the hospital last year on his birthday, as well. He has a great attitude about it, thank goodness! Still makes me sad! We should all be home celebrating with him, but we will make the best of this situation. We've learned to value every day as much as do someone's birthday. Makes life happy all the time! ; )
Wednesday, November 18, 2009 11:49 AM, CST
Quick update...we are NOT in the hospital right now. One of those nice little flub ups that would have been nice to have avoided. Before this new protocol can be started, Sicily's creatine levels needed to be checked. So we are home collecting urine for the next twenty four hours and then returning sometime tomorrow. Little peeved right now, but I'll get over it. We could have been doing this yesterday had someone told us it needed to be done. When you are mentally prepared to get started, it's frustrating to be sent home!!!
I'll update a little more later when my nerves have calmed down. Right now I have to get Isabella to finish her lunch and get her back to school. She and I spent the morning at the diabetic clinic going over how she is doing. I'm stretched a little thin right now!!!
I am doing much better. I did take the opportunity to look at this as another night together as a family unit, and enjoy the fact that we now have a fourteen year old son. Even though we celebrated Corinthian's birthday last night, he's going to get a two for one birthday deal out of this!
I've always considered myself a pretty flexible person, but I guess I still need work in the area of "last minute changes!" When you've been working towards a goal...a very important goal, and something doesn't go as planned, it can be hard to redirect the energy you've built up for it! But I did! I've conquered a few little projects around the house that I've kept putting off. I was able to run to Sicily's preschool to order her school pictures, which I might not have been able to do. I also packaged up some little hats to send to our little cancer buddy, Cash, that I haven't had a chance to do yet. So, I've made the best of it.
We are diligently collecting Sicily's urine for the creatinine clearance test. Pray that it all goes well tomorrow so she can start trying to get rid of this mean monster growing inside of her. I will be taking her back at 9:00 in the morning. I'll have the laptop with me, hopefully, so I can try to update what entails!
Isabella's appointment this morning at the diabetic clinic went really well. They are pleased with how she is doing. She's already gained back a little weight that she had lost and her blood sugar is really at a nice level. We were there for almost two hours. As we were driving home on the turnpike, my cell phone rang and I answered it to hear the nurse practitioner's voice whom we just left say we were supposed to visit with one more person. I pleaded to just talk to the nurse over the phone, but they said not to worry that we would just catch up at her next appointment.
One interesting thing that I brought home to discuss with Patrick is the opportunity for Isabella to take part in a Phase III, 3-Arm, Randomized, Double-Blind, Placebo-Controlled, Multicenter Study to investigate the impact of a vaccine called Diamyd on the progression of diabetes in newly diagnosed Type 1 diabetes patients. It's a vaccine that has been studied in Europe that affects the beta cells of the pancreas and keeps the pancreas from completely losing its ability to excrete insulin on it's own. It is in no way a cure, but could help Isabella's body continue to help itself for as long as possible. It's very confusing and Patrick and I need to talk more in depth about it, but I am all for it already.
The kicker is that it is a 3-arm test...what that means is that some of the participants will receive the complete drug, some will receive it part of the time and some will not receive any of the drug...they will get a placebo. So, it is a study and we won't know for over two and a half years if she got any of the drug. But again, I am strongly leaning towards it. I plan on taking all the paper work with me to the hospital with Sicily so I can study it more and be prepared to ask a few more questions.
So, that is about all I have for now. Thank you all for the continued support in all the many ways that you give it! Pray things get going tomorrow so we can breath a little easier! Love to you all!
One more quick note...the Friday after Thanksgiving, a blood drive in Sicily's honor will be held in our beloved town of Wellington. We won't be able to be there physically, but will definitely be there in spirit. A really nice article was written in the Wellington Daily News about Sicily and her current battle. I want to thank all those in advance that have signed up to donate. We are guaranteed to need more blood throughout this next treatment. Even though what is donated won't be going directly to Sicily, there are so many out there that are in need and she will be receiving the beautiful life sustaining fluid from some other generous person that has donated in our area! http://www.wellingtondailynews.com/h...ader-fights-on
We are in the hospital, or clinic I should say...not in a room yet, and waiting to do a couple of more tests before chemo can begin. A CT scan of the chest needs to be done as a baseline for they fear that a nodule has shown up there. The CT of the abdomen from last week showed just the tips of the lower lungs and that is where the concern is. They want to make sure nothing else shows up and if it does, we need to know now before chemo starts. Please pray that Sicily’s lungs are not part of the battlefield and that we don’t need to add that to our worries.
We will also have an ultra sound to use as a baseline, as well, so we can check back on the areas of concern without using contrast that is hard on Sicily’s remaining partial left kidney. Lots of stuff to do! We also briefly discussed the option of doing a stem cell transplant if we do not achieve the results we need right off the bat. Again, lots to think about. We are just more than ready to get this ball rolling and pray it goes in the direction we need it to go!
I will update more when we get settled into a room. Just patiently waiting, waiting, waiting!
This morning before we left I kept thinking to myself, “Pee, pee, pee!” Not for me, but to remind myself to retrieve the large orange container in the garage fridge that contained all the fluid we’d collected the last twenty four hours. I put it in the vehicle and as I sat down in the front seat my eyes fell on the sticky note stuck to the steering wheel that simply read, “Pee!” Patrick’s gentle reminder for me not to forget that ever important fluid. Had me smiling as I backed out of the garage.
I have tears welling up in my eyes, and for reasons other than what you may think. I’ll explain why in a moment.
First let me explain some of the results of today. The chest CT did pretty much confirm a 4mm nodule inferiorly in the anterior aspect of the right middle lobe (lung). It is a concern and will be watched very closely, but the bright side is nothing else showed up in her lungs. Since we became aware of this potential spot, my biggest fear was that it could be found elsewhere in her lungs. So even though this is not great news, I’m dealing with it okay just knowing that Sicily’s chemo will begin within the hour.
First dose of Carboplatin will be administered around 5:30. This drug is a concern as it is considered to be nephrotoxic…meaning it could be potentially damaging to her remaining left partial kidney. Again, this will all be monitored very closely through urine samples. This is the reason why we so desperately needed to check her creatinine levels before this drug was started. Normal “low” levels are around 70. Sicily is at 57, so they are adjusting her Carboplatin down to a lower dose.
I’m not sure what exactly the creatinine levels mean so you can be sure I will be researching about them later. Patrick in on his way here to spend the night. He just dropped off the older three kids at piano lessons and I will go pick them up and take them home.
My reason for tears was something Patrick relayed to me over the phone. He said that Isabella, who always comes home with homework, has none this evening because her Science teacher helped her with it…even with other subjects. I can’t even begin to explain how it feels to know that Corinthian, Isabella and Elias are being looked after by such caring people at their schools. When people ask us how we are able to do what we are doing, it’s because of counselors, teachers, office staff, neighbors, our church family and countless others that have stepped up to help us on a day to day basis. This is totally one of those instances when something bad brings out the best in people!
It was somewhat strange for me this morning as I walked Sicily back to the elevator after leaving the pediatric oncology clinic and pushed the number three button that would deliver us to the third floor of the Children’s Hospital. Once we walked through the double doors and onto the floor, many familiar faces greeted us and there was a homecoming feeling floating in my heart. I will never forget when we left here last time on the night of June 8th, hoping not to need to return, but deep down in the gut of my soul, I knew we would be back. And you know what? It’s okay!!!
Daddy is here so I better get ready to head out. This is the hardest part. I want to stay so bad. Patrick and I work well switching back and forth, but we both want to be here for the most part. I’m happy to get to be with our other three kiddos this evening. I value every minute with them all!
Everyone enjoy your evening! We continue to feel wrapped in love and prayers and they are sustaining us more than you will ever know!!!
Friday, November 20, 2009 8:52 PM, CST
We’ve had a pretty good day all in all. Busy…lots of walks and Uno cards. That’s Sicily’s new obsession…playing Uno, and she’s pretty darn good at it!
I spent some time trying to familiarize myself with the new routine of chemo drugs and other medicines needed to make this go over smoothly. We are currently waiting for her dose of Etoposide which runs for two hours and then it’s onto the Ifosfamide. Her medicine that helps protect her bladder runs in between and then every three hours for a total of four doses. That’s what takes the longest. She will only get the Carboplatin on the first day of treatment each time. We should be sprung out by Sunday. We can expect four days and three nights every third week, barring any complications in between with fevers. We already have our prefilled GCSF injections waiting for us in the fridge at home. Nurse mommy is practiced up and ready to go!
Sicily and I enjoyed an awesome visit today from my dear friend, Walgreen’s Kelli. I’ll explain why I call her that, but I first have to say what a blessing she is to me and how I love that she makes me laugh, and we cry together, and then we laugh in hysterics through our tears. It doesn’t get much better than that.
I first met Kelli the night Sicily had her first surgery in OKC to implant the port we’ve been using for chemo and blood transfusions and everything else for the past fifteen months (that still works, thank the Lord!). I went to the Walgreen’s by my sister’s house where we were staying to get Sicily’s prescription filled for the pain medication she was desperately in need of. This tall, pretty pharmacy tech waited on me, and I don’t know how our conversation exactly started, but I did tell her that I was there to get the medication for my daughter who was just diagnosed with cancer. There was an immediate look of concern and empathy on her face and she said she wanted to tell me something when I came back to pick it up. It turns out she was very familiar with the pain and fear we were facing as her little cousin, Tanner, who lives in Texas, had battled neuroblastoma.
She wanted to tell me about CaringBridge and I was so excited to tell her I’d already started a site for Sicily. We exchanged site information and from that moment on, Kelli became my friend. We continued to keep in touch until she and her husband moved to “our neck of the woods” over the summer (I was so excited!). The story only gets better as Kelli told her mom, Katie, after that night about our meeting and a deep, special relationship grew out of that, as well. I finally got to hug “Queen Katie” this summer when she came to visit our precious Kelli. This is just another one of those “God” things I am so grateful for. It’s that brilliantly glowing silver lining that is sometimes hidden in the midst of a gray situation. So even though Kelli no longer works at the Walgreen’s down the corner from my sister and has moved onto a bigger adventure, she will always be “Walgreen’s Kelli” to me and I thank God for that chance meeting! ; )
The other sweet surprise today was a visit from a lady we meet in the play/art room during one of Sicily’s previous chemo treatments. She was a volunteer that day and we were the only ones in the room. She and I sat and talked and I learned that she, too, had been affected by the devastation of childhood cancer with a grandson. There is such an instantaneous bond between people when they learn they share a common experience. A mutual understanding is felt and sometimes a gentle smile is all we need to know someone else understands our pain. I have thought of her so often and even wondered if we would get to see her again. You can imagine my surprise when she stopped in to visit us today. Once again, God puts people in our lives for a reason! ; ) I love these instances more than I could ever explain.
I continue to soak up all the prayers I feel being lifted around us. I joke that I wish I had a way to record my thoughts so I could share more of them, but unfortunately, so many of those thoughts come to me while in the shower. Oh, how the cleansing water clears my mind and I think about everything that is around me.
This morning, after I got Elias off on the bus, those thoughts started to ramble around and the one that repeated over and over again in my head was just the beginning of the Lord’s Prayer…”Our Father, who art in heaven, hallowed be Thy name, Thy Kingdom come, Thy will be done…Thy will be done…Thy will be done.” Those four words kept repeating over and over again in my head. There was an overwhelming emotion rising up in my chest and I could feel tears starting to sting my eyes. I think for the very first time I felt the ability to accept deep in my heart whatever God’s will may be. I think this is probably one of the toughest personal decisions I’ve ever put upon myself to make.
Basically I’m saying I will accept whatever outcome God has planned for us concerning Sicily. I am living in reality and I hate knowing that this may not turn out the way we hope or plan. There is such a huge comfort in the peace that is found when I say to myself, and to others, that I will accept God’s will. This does not mean that I am in any way giving up hope. I am still chuck full of hope, but all this going on around me is beyond my control. I will continue to pray and solicit prayers for Sicily’s complete healing. I still believe in miracles, but I will not live in denial and let myself crumble faster than a day old cookie sitting on the counter if we don’t get to our way. “Our ways are not God’s ways!!!”
I’ve already grieved from day one the end of the innocence my young daughter has been forced to face. I’ve experienced and dealt with the anger, as well…all a part of the steps one takes when handling the loss of someone, even though she is still here. This is the coping mechanism I did not know I possessed. Everyday until this is over, if it ever is, I will repeat those four little words…”Thy will be done…” and accept them in my heart and in my soul!
Little princess has been smiling big cheesy grins at everyone today which is a huge change from inpatient stays of past. I think her hard shell must’ve softened because of her interaction at preschool. She still doesn’t talk too much to others, but I think she is sliding back into her comfort zone here. My one disappointment is that the play/art room we dearly loved to visit has not been opened yet while we’ve been here. It is solely staffed by volunteers but for some reason there haven’t been any. I still think the whole H1N1 has a lot of people scared! I don’t blame them!
It’s time to change out movies and deliver a squirt of foamy hand sanitizer to the princess. It looks like whipped cream and she loves the stuff. She is currently rubbing it on her latex glove clad hands. I guess a girl on chemo can never be too careful! ; ) Love to you all!!!
Saturday, November 21, 2009 10:36 AM, CST
Good morning folks,
We did not have a very good night. Sicily’s body decided to have an adverse affect to the Ifosfamide. She wet the bed twice and she basically lost control of her body movements. It appears that Ifosfamide, on rare occasions, has neurological side effects. But, and it’s a good “but,” they are already pumping her full of Methylene Blue which should counter affect these complications. She is sleeping peacefully right now, but that was not the case during the night. She whimpered and cried and I was not able to console her. When I helped her up to change her clothes after the first bed soaking, she fell on the floor. I helped her up but she was not able to make her legs move the way she wanted them to. What broke my heart the most was that she kept saying, “I can do it, I can do it!” But she couldn’t.
I picked her up and carried her to the bathroom. Even sitting on the toilet she didn’t have control of her head at times and she just sort of bobbed around. I know this scared her, as it did me, but I did not let her know my fears. Luckily, even though this is a rare reaction, Dr. Hum did have a solution. The Methylene Blue is exactly that…BLUE. It’s the perfect shade of KU blue! So I told everyone around here if it works on Sicily, we will be referring to it as “that KU Blue medicine!” ; ) She will be peeing blue soon, as well. Her urine is so diluted that it is void of any yellow, so what we see going in is what we’ll see coming out!
The way the Ifosfamide works is that it goes in the body and does not become activated until it hits the liver. It then attacks the cancer cells and travels to the kidney to be filtered and then exits the body through the urine. With Sicily only having two thirds of one little kidney, she had some build up in her kidney and that is what caused her to have a reaction. The plan for now is to skip this evening’s dose of Ifosfamide. We need to let her body recover. When we continue with the next cycle, she will receive the Methylene Blue before and after the Ifosfamide to hopefully prevent this from happening again. Some may ask why it was not given to begin with, as a preventative measure, and that’s simply because this is a rare reaction that has occurred and we don’t want to give Sicily’s little body any more harsh medicine than what we really have to. I’m comfortable with this plan and I just ask for prayers that it works to her benefit!
Since I am constantly asking for prayers, one came to me last night. Just as another possible option, I want to pray that the chemo shrinks the tumor away from the vena cava just so that surgery, again, could be thrown back into the equation. Though I truly hate the idea of having yet another surgery on her precious little body, I’m willing to ask for it just so we have as many back up plans as possible! I don’t know about the spot on the lungs whether or not it is possible it could be removed at any point. I still have high hopes that the chemo will do its job and kill these anaplastic cells once and for all!!!
Sleeping beauty is still resting peacefully so I may attempt to jump in the shower. I’m still in my pj’s and would love to just crawl in bed beside her and sleep, but these little kid sized hospital beds don’t fit two people very well! Or even one and a half!
We have our guardian nurse on watch so I feel comfortable closing the bathroom door for a short bit. I would feel better if she would briefly wake up to go pee a little blue, first. My luck is she will do so when I’m in the shower. I will update if there are any changes. Just pray she will get to go on one of her beloved walks later today. Love you all!
In the past twenty four hours I feel like I've just about experienced every conceivable emotion in the book. This is why I can so easily equate this journey to a roller coaster ride! My emotions change with each twist and turn!
Yesterday was one of those days where my heart felt the heaviest it has felt in a very long time. I did not want to leave Sicily's side in the hospital, yet I also did not want to be apart from my three other kiddos and my hubby! Like I've said before, Patrick and I work the best when we take our turns between home and hospital, and after the experiences of Friday night, I knew I needed to let go of my over protective selfish mommy desires and let daddy step in. Besides, Sicily had been crying for daddy a lot and he needs to be with her as much as I do! We laugh at Sicily's personality when it comes to how she treats her parents, who, by the way, are pretty masterful at the art of teamwork...except in her eyes, she prefers to favor one over the other all the time. She can never want us both at the same time or push us away at the same time...she's either in mommy mode or daddy mode. It makes it tough sometimes when it's mommy's turn at the hospital and all she wants is daddy! We still manage and allow ourselves a few eye rolls from time to time!
One of the reasons yesterday ended up being so hard, was due to a simple statement made by our soft hearted eight year old, Elias. He stayed with me in Sicily's hospital room as Patrick took Corinthian and Isabella to run an errand. Sicily was resting pretty peacefully at the time. His young ears had been privy to the events that had occurred during the night so I know his mind was working in over drive trying to comprehend it all. We had a movie playing on low volume and the room was otherwise silent except for the soft purring hum of the IV machine. Out of the blue, Elias said, “I wish I could trade places with her so she didn't have to go through all this.” How is a mother supposed to comment back to that one? I did, by just saying, “I know you do, honey!” That's where my pain just deepens. I could work harder at sheltering him from all that is going on, but Patrick and I have always held the belief of being honest, direct and forthcoming with our kids. We, as a family, are a team and we don't want to leave them out in any way.
One of my worst fears would be for one of them to come to me someday and say, “I never knew what exactly was going on...why did you not tell me?” We are careful to explain in simple terms and at the same time, guard against scaring them, but this is just how we feel comfortable about continuing to live our lives “despite of” the circumstances.
When I brought the other three kids home yesterday afternoon, I did have to go in my room and close the door for awhile just to let myself cry away the emotions that had built up. I know I could just as easily done this while still in the hospital room with Sicily, but there are times I truly need to just cry alone. That doesn't happen very often. I honestly prefer crying around someone else. It helps to have someone there to help comfort me and I can in return comfort them, as well. But yesterday needed to be just for me.
When I was helping Sicily to and from the bathroom during the night when she could not manage her own body movements, I was there alone and I managed okay, but I wanted, at times, to just curl up and cry...but that was not going help Sicily get through this. So I held it in until I was ready to release it.
I just casually puttered around the house yesterday not really accomplishing much, mainly because I was physically exhausted. I'm a wimp when it comes to getting a bad night of sleep. I know other cancer parents who have endured night after night of stressful situations, but I start to lose motivation and lack the energy to do much else after one stressful night. After time, if this becomes routine, I will improve. I will adapt and learn to function on less shut eye.
I called Patrick from time to time yesterday evening to check in and was told the same thing each time...nothing had changed. The cloud continued to hover over me. Then, late in the evening, the phone rang and I read on the caller ID, “St. Francis Hospital.” I picked up the receiver expecting to hear Patrick's voice calling to tell me goodnight, but instead I heard a cute and chipper, “Hi mommy, I'm beating daddy!” My heart leaped with joy...Sicily was back. She giggled and taunted that she was going to continue to beat daddy at UNO. I asked her if since she slept all day, was she going to be able to sleep during the night or was she planning on staying up all night to watch movies. Her reply was, “I'm going to stay up allllllll night!” Yeah for daddy! ; )
Patrick did report this morning that she did sleep but got up to use the bathroom every couple of hours, which is good...means she was flushing out the rest of the chemo drugs. By this morning, she was independent, except for the help needed to pull the IV tower, of getting to and from the bathroom. I have exhaled, big time. There is always that thought and fear that enters the mind that says, “What if this is permanent?” I asked Dr. Hum many questions, and she assured me this was indeed just a side affect, and not a permanent condition! Yeah for Dr. Hum, as well. She was right on top of this when it did occur. I will be on guard with the next dose of Ifosfamide, but we/they know what to expect.
Yesterday may not have started out very good, but it ended on a high note. My strength gets boosted when I read messages left in the guestbook. I cry tears that only come from the feeling that we are not doing this alone! When I say my strength comes from others, I truly mean that! I know this may sound strange, but when I'm told I'm being strong...THAT makes me strong!
Before bed, I had the best hour long conversation with Corinthian. We sat in the living room and just talked. I went to bed in awe of his maturity and so thankful he is here. He can read is old mother pretty well. Out of the blue during the afternoon when I was feeling very low, he comes to me without saying a word and gives me a hug. THAT makes me strong. At dinner, Elias sits down at the table and, out of the blue, says, “Love you Corinthian...love you Isabella!” THAT makes me strong. Like I've said before, difficult situations can bring out the best in people. Isabella has embraced her new life with diabetes and is starting to want to be more independent with all aspects of it...THAT makes me strong. I can't let go of my maternal over protection and let her go completely solo, yet, but the fact that she wants to is awesome!!!
I will look at this first treatment and in my heart I have to believe that it is affecting the cancer cells. I had several people bring the subject up, and had already thought the same thing...Sicily sailed through her first treatments almost “too well.” The drugs must not have been strong enough for her cancer. Now that we are indeed seeing side affects in her, these drugs just may be the ticket...”Ya...that's the ticket!” ; ) I will endure what took place Friday night as long as I know I will get my old Sicily back in the end!!!
I'd better go. I'm waiting for Patrick to call soon telling me they received their walking papers. I want to go help him load up and bring her home. She is anxious to see her kitty and I'm anxious to get some food in her. She does not eat very well inpatient, not that I know many who have. She has experienced a little vomiting this time around, too. Just another sign that we've got some heavy duty arsenal going through her veins! I will start giving her the GCSF shots tonight to help boost her white blood cells. We will visit the clinic on Wednesday for a check on her counts.
Thanks for letting me ramble and helping me let go of the load I bare in my heart. I always feel good after I've journaled! Everyone have a blessed Sunday!!! "But there for the Grace of God go I!"
We're continuing on our roller coaster ride. We found out last night that if you mix a light pink Popsicle with a purple Popsicle you end up with hot pink. At least that is what ended up on Sicily's bed, the floor and Corinthian's face...who happened to feel the need to sleep on the floor in Sicily's room last night. Fortunately, Aunt Bett is here visiting and was able to help me clean things up and stayed at Sicily's side all night in case she needed anything. Corinthian stayed as well, although he moved to the floor at the end of her bed, just in case. We wish Bett could just move in with us and I know she does, too. We're petty much in need of a three parent household right now. Since that is not a possibility, she drives the four hour plus drive when ever she can. I know that Aunt Pat would be here at a moment's notice, too...well, a moment past the two and a half hour drive she would have.
Before the events at bedtime, Sicily did begin to run a low grade fever of 100.2...not high enough to warrant a call to the oncologist, but enough of a concern for us to watch her that much closer. Keep in mind this is all new territory for us as we did not see these affects the first time. She has practically no appetite which weighs on me as I want for her to keep up her strength. She does not complain of being nauseous, so it was a bit of a surprise when her stomach gave up its meek contents of two Popsicles! She is doing a little better today and Aunt Bett is getting bits and pieces in her. Pray those bits and pieces stay down.
Today is only half over and I feel like I've put in a full day already. I drove Isabella to school this morning so that I could talk to her choir teacher about the two days of off campus practices they where having for their musical. I needed to be able to get to her at lunch to give her an insulin shot, which I have just returned from doing. Only glitch was that I forgot to put more monitor testing strips in her kit so we could not check her blood sugar. I did give her insulin to cover her lunch, but we are to check every time just to make sure she does not need a correction. I'm trying my best to cross all my “t's” and dot all my “i's” but some are slipping past me.
After I dropped her off this morning, I came home and cleaned everything out of our two year old Nissan mini van because I needed to take it to the dealership as two warning lights on the dash have decided to glow red...one that says “brake” and one the shows a little picture of the battery. Patrick and I checked the manual and tried the recommended suggestions, but to no avail. So, it was off to the experts.
Little did we know that when Bett said last Thursday that she wanted to come for a visit how perfect her timing would be. We buckled Sicily into the backseat of her car and she proceeded to follow me the approximate five miles to the dealership. We were stopped at a red light getting ready to turn onto a very busy street. When the light turned green and I switched my foot from the brake pedal to the gas, the mini van barely inched along. I pushed harder on the gas, basically flooring it...but nothing. I quickly looked to my right and there was an entrance to the parking lot of a drug store. I slowly pulled in and Bett pulled up beside me. We rolled down our windows and I told her that the van was not going to make it. I turned it off and pulled the keys out of the ignition and called Patrick at work on my cell phone. He said he would call the dealership and figure out our options.
After sitting for about fifteen minutes, I tried to start the van back up but the engine would not even turn over. We ended up having to leave it there with the key under the floor mat with hopes the tow truck would be there soon! I got in Bett's car and laughed. I have to! Things are building up and I'm not in the mood to lose it! ; ) So I have to just laugh.
As she drove us back home, instead of focusing on all the things that where going wrong, we started to think about what was going right. Having Bett here to help us was RIGHT...being able to immediately turn into that parking lot was RIGHT...giving my day to God when I first put my feet on the ground this morning was RIGHT! We'll be fine. I think God is just trying to give me lots of stuff to write about. I look forward to the day when I can journal, “Sorry folks, don't have much for you today!” ; )
I will end with something that hit hard in my heart this morning. As usual, I'm sending Elias out the door to the bus while I still have my arm in his back pack pulling out papers from last Friday. I rummaged through the usual school work until my eyes fell on a drawing he had done that completely blew me away. It's a picture of a boy crying, and the reason you know it's a boy is because it is labeled “Boy” with an arrow pointing to the figure. Under the word boy is “Elias,” with another arrow pointing. Under that is a rather large bubble, like the kind you see in a cartoon. In the bubble are these words...“I am sad. My baby sister Sicily she's not coming home intil monday and she has that dum old cancer again and right now she's in the hostpitle. And I miss her. I Love her so much. I want her back home as much as I Love her.” Sorry..I'll grab a kleenix (again) with you. I've made several copies of this and think this should be a poster for a national campaign as to how much pediatric cancer hurts us all!!!
Love you all...each and everyone of you!!!
Wednesday, November 25, 2009 3:04 PM, CST Hello all,
Just wanted to check in very quickly as I don't have much time. I won't be able to update the next few days so I wanted to wish everybody a very Happy and FULL Thanksgiving!
The van has been repaired and it was not anything too major...just a little inconvenience, but manageable!
Sicily is doing pretty good. Patrick took her in for a "numbers check" this morning and though I don't have them before me, the report was good. We still need to continue her GCSF shots until Sunday and then I take her back on Tuesday.
Since this is the time of year we ponder and focus on what we are really thankful for, let yourself go really deep and search your heart and your soul. Even if you are going through a tough time, there will definitely be something you can be thankful for!