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Good Evening all...
Interesting day, to say the least. I am getting ready to lay down and go to sleep with a little gal who got to eat about seven bites of spaghetti this evening and one M&M...and so far, so good. The doctors I guess decided to just try this and see what happens.
We are starting to wonder if what is in her TPN, the yellow IV bag we call lemonade, might be a contributor to her elevated enzymes. I think only time will tell. If she can keep down the little she has had, they might be able to discontinue the TPN and lipids.
She is sleeping with me tonight on the couch/bed so I can keep a close eye on her. Wish us luck! We're both pretty tired so I'll journal more tomorrow. Pray, Pray, Pray for her stomach to accept the food!
We had a pretty good night. I didn't sleep great only because I felt I was on guard, but I'm happy to report the spaghetti stayed where it was supposed to.
The nurse said that there is an order to stop the TPN and lipids later today. Sicily says she is not hungry right now, but does request...you guessed it...more spaghetti. So, that will be on our menu for lunch again today. I'm glad she wants something!
We are getting ready to go for a walk down the hall to get her a cup of crushed ice and water. Keep the prayers coming...they are working! Report back more later! ; )
Good Morning all...
We have walking papers! Patrick is at the hospital with Sicily right now as I came home last night to take care of the kids.
My trip to Kansas for a benefit was cancelled due to bad weather and will be rescheduled for sometime in January. I was really looking forward to that trip "home" but am glad I didn't have to drive through the snow. We are snow-less in the Tulsa area...okay with me!
I don't know how soon Patrick and Sicily will be home because it seems to take awhile for all the paper work to get done. I'm hoping it's sometime before evening. I think Sicily may actually be ready. She hasn't been lately. She admits to liking being in the hospital. Who could blame her...no siblings to fight with, she gets waited on hand and foot and the nurses are all so sweet.
Speaking of sweet, Sicily's surgeon, Dr. Puffinbarger visited them this morning just to say goodbye. Patrick said she told him after Sicily's port is removed when chemo is completed, she wants a graduation invitation and a wedding invitation. I'm sure it's an occupational hazard for doctors to get emotionally tied to patients, but in this case, it was hard not to.
I absolutely adore Dr. Puff and am so glad that Sicily was in her care, because she is a mother, too, and I feel like she really "cared" for Sicily...beyond what a doctor is supposed to! She's a very special person in my eyes and she will be forever in my heart!
I can't wait for our little doll to come home and drive her little pink and purple coupe around the house, with Stowie the kitty in her lap...against her will, or course. I can't wait to make her chocolate chip Eggo waffle's for breakfast every morning and watch her take two hours to finish them because she's too busy to actually sit down and eat them all at once! I can't wait for her to get excited to see her sibling's bus pull up in front of the house and greet them at the door. I'm so ready for all of us to be under one roof again! We can all heal together!
We still don't know what the next step in Sicily's treatment will be. We'll have to return to OKC for an appointment with Dr. Meyer. I know she still has to heal from her surgery a bit longer before the chemo resumes and the radiation begins. But after a reuniting of our family, we can gear ourselves up for the next leg of the journey.
We can't even begin to thank everyone for all the prayers, thoughts, gifts, support, visits and everything else that has been wonderfully bestowed upon us. Thank you , Thank you, Thank you!!! It may take us awhile to get all the personal thank you cards out to everyone, but until then please know how grateful and appreciative we are. We are truly humbled!
Today is definitely a day to rejoice. The war is not over, but we will celebrate this victory that we have been given. God Bless You All!!! I'll report back later when our princess is in her palace again!
Home Sweet Home!
When Sicily arrived home yesterday, she yelled out, "I'm home!" Then she started calling out for her brothers and sister, but they were unfortunately still at school. But Stowie was here...and they were both glad to see each other. They touched noses. I honestly believe that little kitty was glad to see her pesky little friend! And Sicily quickly remembered how wonderful home can be!
She seems to be doing fine. We aren't letting her walk up and down the stairs so she is carried, mainly by big brother Corinthian. She has been cruising around the house in her coupe, just as I had imagined she would.
All four kids crammed into the boys room to sleep last night. I don't know how well anyone slept, but we had to let them do it. Tonight we may have everyone sleep in their own beds, all but Sicily...she still migrates from room to room with her little princess cot she loves to sleep in.
Coming home to a house with a heater running all the time has played havoc on my sinuses and now I have a pretty good head cold going, but I'll survive! I had to drive Isabella to school this morning for choir practice and I went in my bathrobe...not something I would normally do, but lots of things have changed in my mind during the past month. So what if I'm in my bathrobe...no one would see me, unless I was pulled over for speeding...and you know I'd never do that! ; )
Sicily is sitting at the kitchen table right now painting. Her eyes are full and bright, and she just looks good. I still have a knot in my stomach that worries about the high pancreatic enzyme levels that plagued us this past week, but no one in the hospital said anything to Patrick about them before they left yesterday, so I am assuming things are okay. I know the symptoms of pancreatitus, and she has none of them! She will forever be under my watchful eye for many things...that's part of our new normal!
We are still waiting to hear what our next step will be. I'm kind of anxious just so I know what to expect. Will it be a protocol that involves some inpatient chemo? I just need to be mentally prepared.
Patrick is back to work today. I hope he can now concentrate since we are all home together. We are so blessed for the new "family" we have joined with his new job. They have been so incredibly supportive. I don't know if they realize how important their role was in us helping our little girl through this whole process. Patrick never once felt pressure and in return I think he's so ready to get back in the swing of things and transfer focus to work for a change. We still have a very long road ahead of us, but this one obstacle has been overcome and we can regroup and prepare for what is ahead!
I'm still trying to figure out what day of the week it is and wrap my mind around the fact that Christmas is just two weeks away. I have a little catching up to do! Well, better go check on the budding artist and see what sort of masterpiece she is creating! Everyone have a good Thursday...the weekend is right around the corner...YEAH!!!
I mailed a card for Sicily and her family, it ended up being a Christmas card with snowmen on it, and a note inside saying Merry Christmas and Welcome Home. I loved making it, because it was for Sicily, I feel like I know them just from reading the posts everyday. I continue to pray she does well and hope they have the Merriest of Christmases.
You only live once, but if you do it right, once is enough! Chemo Angel
Sorry...I haven't been on the computer much today. I've been putting Christmas presents in boxes and trying to organize things around here...and entertain Miss Sicily!
The older kids are going to help me wrap presents tomorrow night. They are so excited. I love wrapping presents...it's somewhat theraputic for me, but this year I'm so far behind I'm going to need their help! And they are more than willing. I just hope the right labels get on the right presents or it could be an interesting Christmas morning.
I have to share a funny little story about Elias, our smart witted seven year old son. When I've asked him what he wants for Christmas, his reply has been "a dirt bike." I usually role my eyes and ask what else is on his little mental Christmas list. One day, after getting the same answer to my question, I finally replied, "Elias, dirt bikes are very expensive!" With that comment, he gave me a look and shot back, "Mom, it's FREE...Santa would bring it to me...DUH!" How stupid of me!
Despite Santa's potential generosity in this little boys eyes, I still had to burst his bubble ant tell him that Santa would not bring him something that his parents didn't want him to have. My simple reply..."they're just too dangerous!" I sound like the mother from The Christmas Story..."You'll shoot your eye out!" Bless his heart, he still hasn't given up, though. Hope come Christmas morning he is not too disappointed, but I've prepared him for the reality of the situation! I asked if he would be content with receiving a surprise, and he said he would...we'll just have to wait and see! ; ) What a stinker!
Sicily is really doing well today. She seems like her old self. Her head is covered with a soft light colored fuzz...I hate that once chemo resumes it will all disappear again. Still don't know yet what's next. Guess the doctor's are in no rush, I'd just like to know! Patience is being practiced once more!
So glad it's the weekend. Time for some good family togetherness!!! Everyone have a great Friday evening!
I awoke this morning in a little bit of a panick as I was sleeping with Sicily in her room and the light coming from her window clued me in to the fact that it had to be past seven o'clock. I carefully slithered out of bed in hopes of not awaking her and began to look for my alarm clock, which appeared to be missing. I crawled around on the floor and looked under the bed to no avail.
I tiptoed out of her room and found Corinthian dressed and sitting at his desk working on the computer. I said, "Corinthian, what time is it?" And he replied that it was seven fifteen. I must've still been half asleep as I asked again in a bit of a panic what time it was and he again told me seven fifteen. I usually drive him to the bus stop by four after so I was getting a little excited. I guess he could tell by the look on my face so he conceded that school had been cancelled due to ice. A sense of relief came over me.
Patrick had apparently taken my alarm clock out of the room so as to let me sleep in a little. I tried to carefully crawl back into bed with Sicily, but she started to stir and her eyes popped open. And that's usually all she wrote...no chance of dosing off back to sleep. But that's okay. I can always lay back down with her later. I probably need to as I didn't sleep well with her last night.
I love cuddling up with her, but many times in the night, I find her laying sideways in bed with her feet in my back. That wouldn't be all that bad, except those little feet have little toes that have toenails that are a little too long! Note to self...trim Sicily's toenails today!!!
The kids are excited. They love school but there is just something about a snow (or ice) day that is special. Sicily is extra happy that she has her siblings to play with and entertain her. Maybe mommy can actually get something done around the house today! I was going to try to attempt to mail the Christmas cards that I am only halfway done with, but when I heard on the news that today is the busiest mailing day, I sort of lost my enthusiasm to proceed with that activity today. I'll procrastinate one more day!
Sicily is doing really good. It's hard to believe she was hooked up to a ventilator just two weeks ago! Her little body appears to be working well! The weather here yesterday got up to I think 74 in the afternoon. It dropped over fifty degrees by late evening...hard to believe. Patrick was out splitting fire wood in shorts and a t-shirt and Isabella was wearing around flip-flops. I was in the living room wrapping presents with the ceiling fan on. Of course, Elias comes in and asks when we can start a fire. I guess temperatures don't mean a whole lot to him! Well, I'd better make the most of this day since I have so much impromptu help! Everyone have a great day!
Kids received another gift today...school canceled again. We found out last night as the school system has a network in place that makes automated phone calls. Nice to know ahead of time.
Patrick and I will be taking Sicily to OKC this afternoon for an appointment with Dr. Meyer, her oncologist. They called yesterday and squeezed us in today. My heart and mind are both heavy right now. Since we've been home, life has felt like old times. It's sobering to come back to reality and remember we still have a long road ahead of us. I'm very anxious for today's visit as we have had no clue as to what protocol for chemo treatment Sicily will be on.
The current protocol (UH-1) was suspended due to it's high level of toxicity...in other words, it was so strong it was lethal to some children. Don't quote me on the numbers, but of the 53 or so children who were on it, three died and about six had life threatening complications. That's too much! So, we'll hopefully find out this afternoon.
Please pray for us to have a safe trip as the roads are still icy and slick in spots. We will be careful! I'll report back when we arrive home this evening. Get your gum ready!
We just arrived back from our appointment in OKC. On the way there, we got a call from the radiologist's office saying that our oncologist wanted us to have an appointment with them tomorrow. Hmmm!
I told her we were on our way from Broken Arrow to OKC right now for a 3:00 appointment. We were so fortunate that they decided to work us in and told us just to come over to their office when we were done with the oncologist. The details are pretty complex so I'll try to go into them more tomorrow.
It's bed time for the kiddos so I'd better lend a hand.
Sicily will start radiation therapy this Thursday, but I'll explain more of that tomorrow, too. I just wanted to jump on here real quick and let everyone know we have our "roadmap" in hand and are gearing up for this journey that may include some 'bumps, detours and all out scary road conditions'...but we put on our all terrain tires and will forge the road ahead!
Kids are out of school again today. We just blew through the three built in snow days. Yikes! But the residential roads are still iced over and I didn't feel too keen on putting my kids on a bus that would be traveling down those perilous roads!
I'm still waiting for a call back from the oncology office in OKC to try to schedule some of Sicily's chemo treatments to coincide with her radiation treatments. Last night we came home with a schedule of seven days, but the radiologist called this morning to let me know that after reviewing Sicily's case, she will be receiving eleven rounds of radiation, because of Sicily's diagnosis of diffused anaplasia. Darn unfavorable histology! But it's nothing we can't handle.
She has her first treatment tomorrow late in the afternoon and then another early Friday morning. Sicily and I will stay with my sister and her family during these treatments. She will have three a week on Monday, Tuesday and Wednesday for the following three weeks. They told us to expect nausea so we will be prepared with our Zofran! It's sad, she will even have a treatment on Christmas Eve morning and they said she may not feel well on Christmas Day. I think Santa Claus will make her Christmas special, though. And hopefully that of the other three kids as well, because they deserve it, too.
Sicily's chemo "roadmap" is complicated. She will be on what's called Regimen I (i) and it will require her to be inpatient quite a bit. Every third week she will spend either five days or three days, alternating due to the type of chemo drugs used. Two new drugs will be added (Cyclophosphamide and Etoposide) to two of the drugs she received in the past (Doxorubicin and Vincristine). I now have to memorize the pronunciation of the two new ones. If you only knew how long it took for me to learn the first ones! I'd never make it in the medical field! My memory for complicated medical terms is handicapped!
Anyway, one of the new medications is so potent that Sicily will need to be pumped full of IV fluids as to make her need to use the bathroom every two hours to flush the drug out of her system. That is the need for hospitalization...among other reasons! Going over all the risks and potential side affects yesterday of the new chemo regimen and the radiation could easily send a person into feeling like "what's the point?" But we know these steps are necessary to attempt to get her healthy again. We'll deal with other things when or if they occur.
The first fourteen weeks of this protocol will be the most draining. After that they taper off a bit, but hospitalization is still part of it. We pray that Sicily will maintain her normal little resilient spirit and handle the chemo as well as she has in the past. We could see more hospital stays if she spikes a fever or her counts go too low and then she cannot receive any chemo. She is starting out great as her ANC is over 11,000 (remember, normal is between 6,400 to 1,500).
Fortunately, Dr. Meyer is very supportive of us staying in Tulsa for the treatments, so Sicily will be treated at The Children's Hospital at St. Francis. If complications arise, we may head back to OKC, but for the time being, Patrick and I feel pretty good about being so close to home, for our kids' sake and our own. We'll take turns staying with Sicily while in the hospital and taking care of our other kids' needs at home. It's going to be a long six months, but there is an end...we just have to keep our sights on that.
Driving to OKC yesterday for the appointment we had long been waiting for, Patrick and I were deep in conversation about all that was happening and what was yet to come. My mind, heart and soul was anxious and a bit heavy. Sicily was quietly napping in her car seat and we had Christmas music playing on the radio. I looked up just in time to read a billboard sign and was somewhat taken aback. It was a simple Bible verse from Psalms 46:10, "Be still and know that I am God!" and I started to feel a sense of calmness. I'd traveled that stretch of interstate time and again and never noticed it before. I asked Patrick, "did you see that?" And he hadn't. Had I seen it? None the less, God's words spoke to me and I listened.
As we were getting closer to our destination, a pretty white Mercedes passed by us and exited to our right and as it did, for some reason I was drawn to it's license plate that read, "THNKPOS!" Think positive...again, another message. I felt stronger and ready to hear what our lives would be in store for the not so distant future.
I think when we we finally sat down to talk with Dr. Meyer, I was almost antsy with anticipation as to find it out all he had to say. We have our game plan now so we can begin to try to win this. That's what I've been waiting for. It's all kind of happening fast and furious beginning with tomorrow, but that's what Patrick and I have wanted!
The gum companies are going to see another surge in their profits in the next six months as the gum chewing warriors are at work in droves. And God Bless you all! We're going to need each and every prayer we can get! That's about all I have for now...I'd better go...snow days can bring out the worst and best behavior in our kids...both need to be addressed so I'd better get off the computer for awhile! Everyone have a good Wednesday!
Today Sicily and I will travel to OKC where she will begin her new chemo protocol and receive her first of eleven rounds of radiation. She gets the "red devil" Doxirubicin this afternoon around 2:30. It has to be administered via an IV pump as it needs to be diluted as it goes in. If you remember, this is one of the scarier drugs as it has a potential to cause problems with the heart. She will continue to be monitored about that.
Then at around 5:10, Sicily will get her first radiation "zapping." This really scares me, I won't lie. She has a bit of a cough right now and even threw up a couple of times in the night. As she puts it, "it's just drainage!" She's heard that a lot lately as half the family has been battling some form of a cold. We had a pretty rough night, the two of us.
Needless to say, I worry about her being able to control her cough during the 90 seconds of treatment. Sounds easy to do, but she really starts to hack when she's laying on her back (I didn't mean for that to be a rhyme!). ; ) A lot of kids her age are usually sedated during radiation but they did somewhat of a trial "dry" run with her Tuesday and she remained perfectly still, as she has during the five CT scans she has endured the past almost four months. I asked if I could go ahead and give her a little Benadryl before her radiation appointment and they said that would be okay. Might help her relax and hold off the cough for a bit.
We'll go spend the night with my sister and her family and then return at 7:00am for another treatment tomorrow morning. Then we'll hopefully be ready to head home. I'm packing my mini-van with all the precautionary needs of transporting a child who may become nauseated...bowl, plastic grocery bags, shower curtain to line the floor, wet wipes...yes, I've thought it all through! This will become a necessity for the next few weeks!
Sicily is now dosing on the couch so I'd better sneak off to the shower. Get your gum ready today! God Bless you all!
PS - Please add Tanner Creed to your gum chewing prayer list. He lives in the same county we lived in for five years in Kansas. In fact, Patrick realized last night that he had coached Tanner along with our son Corinthian in soccer a couple of years ago. Strange that such a somewhat "rare" disease struck two young people who lived so close!
Things went very well this afternoon...we could feel the gum being chewed around us! ; ) (I wonder if Sicily thinks anyone she sees who is chewing gum is praying for her? Okay by me!)
Sicily received her Doxirubicin and then we had to kill a little time before her radiation treatment. That went so much better than I had anticipated. It took more time for them to actually take the pictures before hand than the actual radiation. And I can't express enough how very special everyone there made us feel. I left thinking, WE CAN DO THIS! And Sicily seemed to feel the same.
I'll need to take my camera with me next week so I can photograph the HUGE machine as it is very impressive and somewhat intimidating. I'm not sure I could sit still with that thing moving around me, but Sicily did awesome. I was so proud of her, as usual! She makes some of these stressful situations seem so easy. I'm so glad she is able to do that.
Of course, all credit is given to all of you for lifting her up and thanks be to God for really listening right now. We're still praying she doesn't feel the nausea, but we can handle that even if she does. We'll be back for another treatment bright and early tomorrow morning so Sicily and I will try to go to bed early.
I paid extra attention as I was driving to OKC this afternoon to look for my billboard (Proverbs 46:10...my new favorite passage)...and even though the fog was very heavy, I located it between mile marker 171 and 170 in the west bound lane of I-44...it gave me the chills to see it again today. It's funny, there are no other words on it...no church claiming its message or any form of advertisement. Whoever put it up there, I want to thank them. It totally made an impact on me at the precise moment I needed it. If that was not a message, then I don't know what is. I've talked about how sometimes you have to read and search deep for the meanings of messages that are around us all the time...but this one was point blank undeniable! Thanks, God! I needed that!
I've also talked about how my daughter's cancer can sometimes be a blessing...I received a phone call today that helped me get through my day. A very dear old friend of mine with whom we used to share an apartment, and of whom I think of so often, called me today before Sicily and I left for OKC. Our friendship has pretty much been maintained with the once a year Christmas card exchange, even though I knew she could and would still be there for me if I were ever in need of her. And she is, as are other dear friends of ours. I'm thankful to God for allowing them to still be in our lives, even though distance and time has separated us, it never permanently does.
There is one thing I'm learning in life and that is something bad can always bring about something good. You just have to tear down the walls of fear, sadness and disparity to see the light shining through! We have light shining all around us! We can't ask for more! Little Princess is ready for her pj's as her cousin is already in hers, so I'd better go and fetch them! Pray we have a quiet night and we'll wake ready for another day!
Treatment went well this morning, we were in and out in less than fifteen minutes and were able to be back home to Broken Arrow by a little after 9:00. Of course my eye lids are drooping and Sicily is geared up for the day as she slept most of the way home.
I'm trying to figure out how to get her to eat, she has lost some weight since we've come home from the hospital. She doesn't want anything. I really need her to use the bathroom as that is how the Doxorubicin exits her little body, and we don't want that stuff to stick around any longer than it needs to.
She so far has staged off the nausea, thanks to the Zofran. If we can manage that side affect, I'll consider ourselves do be doing pretty good!
We just scheduled Sicily's first five or so day inpatient treatment for Thursday, January 8th here at the Children's Hospital at St. Francis. That will be here before we know it. Meanwhile, we'll keep plugging away at the radiation and in between try to enjoy the holidays.
Better run and tend to Sicily's needs for now. Love to you all!
Things are pretty much status quo, which is actually good. Sicily said once this morning that she thought she was going to throw up, so we hurried and popped in a Zofran and she seems to be doing fine now.
She slept in our bedroom last night and none of us really got any sleep. She coughs a lot when she lays down, even though I have a humidifier right by her and I rub Vicks on her feet. It upsets her when she has a coughing fit and can't sleep, but we're doing what we can. We may all need naps today...I say that, but Patrick and I rarely give in!
She's in her sister's room watching a movie right now. I'm getting ready to go run a few errands and try to get some Christmas things finished up. Corinthian is with a buddy and they are Salvation Army bell ringers at a local Wal-Mart so I want to run and try to take pictures of them. He was so excited...he's always wanted to do this!
It's over cast and windy here, but not too awfully cold. I've got a lot of catching up to do on laundry and just all around house maintenance, but what doesn't get done, will have to wait for another day.
Sicily and I will head back to OKC on Monday for more radiation and chemo over the following couple of days. We should be home sometime Christmas Eve morning. We're expecting company so we are all excited. We are in need of things to get excited about! Everyone have a good and safe weekend!
We thought by moving further south, we would be in for a treat with milder winter tempatures...not the case. It is eleven degrees right now and our heater is running full force.
Sicily has had two pretty good nights of rest the past two days, which can only help her little body stay strong. I wish we didn't have to leave today for more radiation, but it has to be done. It's so cozy around the house with all the kids home and Patrick on vacation. We'll be leaving this afternoon.
I was having a bit of a hard time yesterday. I'm trying very hard, but for some reason there is this since of guilt that enters my mind when I try to enjoy the holiday. I can't explain why it is there and am trying very hard to ignore it. I told Patrick that it seems like I'd want to put as much effort as possible into it, but maybe that is part of the problem. Sometimes it's hard not to think of the stupid (excuse my bluntness) statistics when it comes to Sicily's case.
When we first started out on this journey and Patrick and I did the normal research, we were somewhat relieved to find out that Wilm's, at least unilateral, has a 90 - 95% five year survival rate, meaning that in five years, that is the percentage that an afflicted person has of being alive. Bi-lateral was a little lower, but still not bad. It seems the more I find out about Sicily's particular diagnosis, the more worried and fearful I get.
While having a conversation with her radiologists, who by the way I also love, she was explaining to me why Sicily has to have eleven days of radiation versus the seven we were initially told. Having unfavorable histology means there is a presence of anaplasia...there are two types, focal and diffuse. The latter is worse, and that is what Sicily has.
I've tried to research it a little but stopped because it just doens't matter anymore that I know every little detail...it's better I don't. Because of all that, Sicily's five year survival rate drops to around 55 -65 %...still not horrible, but not great either! I'm sorry to unload like this just a few days before Christmas, but I know this all plays into why my heart is still so heavy and I'm having a hard time finding my "happy" place. I'll be okay!
Being at my sister and brother-in-law's house is always a good place to be, since we can't be home! And we are having company for the holiday. Two of Patrick's sisters are coming as well as my parents. I needed family here so much, and I am so glad they are coming. For my sake and the sake of everyone else.
Time to pull out the gum again, not like anyone has put it away...Sicily will be treated at 5:30 today, then at 7:00am the following two mornings. She will also get Vincristine tomorrow morning. She still is doing okay with the nausea control...thank you God!
And thank you God, for allowing us to celebrate the birth of you Son, Jesus Christ. I think this Christmas, I will understand the emotional aspect even more! Thank you all, too, for sticking with us. You will never know how much you all have helped us!
PS - Sicily's new favorite movie, the one we will be watching non-stop for days on end, is The Wizard of Oz. I told her that we have a costume of Dorothy that I made for Isabella many Halloweens ago, and she's already decided to wear that next year. I said that's a good idea! She is, after all, still a native Kansian...born and slightly breed there! ; )
Everyone enjoy your day! And let go of the last minute Christmas stress...it just isn't worth it!
I am doing much better, mainly because of all the supportive and encouraging words that have been written. They're like a B12 shot when I'm really in need of a boost!
Sicily is doing good. Her ANC is at 2200, but that is still considered okay. I still fret a little, but I'm learning to let up on that "natural over reaction" skill I posses! She is still not eating great, but we had some time to kill between radiation and chemo this morning so I took her to McDonald's and she ate two pancakes...the most food she has consumed in one setting since pre-surgery days. Yeah!!!
She's enjoying the extra attention she's receiving here in OKC...John's parents are here. It didn't take her that long to warm up to them, and they are wonderful. Patrick and the other kiddos are being entertained back in Broken Arrow by Valerie and Bett so they are having fun, too.
Just wanted to jump on here and let everyone know Sicily is trucking along with treatment! And Sicily wants to give a special "shout out" to her new cancer buddy, Peyton Weems and we love the Hello Kitty...thank you! ; )
We had an absolutely wonderful day yesterday! Sicily is doing so good right now it was the best Christmas present we could have received! Thank you so much, God...you are forever listening to our prayers and know exactly what we need!
Sicily seems like "Sicily" right now. She smiles all the time (in between her normal three-year-old meltdowns) and she jokes and laughs...this all in the past couple of days. Her appetite has improved and she hasn't felt sick at all. Like I said, we couldn't have asked for more.
The kids all had a super duper Christmas morning! Sicily got her pink kitchen that she wanted so much and the kids were pretty much surprised and excited with their gifts. Elias did get his dirt bike...it's about four inches wide and two inches tall, but it's a dirt bike and it makes real engine sounds. His Aunt Bett gave it to him and he was happy. He never said it had to be a real one, did he? ; ) We decorated sugar cookies Christmas Eve evening and left some for Santa, who I think really enjoyed them! The stockings were hung by the chimney with care and there were visions of happiness everywhere!
It was so much fun to have Aunt Bett and Aunt Valerie here along with Grandma and Grandpa Parker. There is just something more exciting when the kids have an audience to watch them, and at times help them open their gifts! There were definitely some surprises and the kids would have to say this was probably the best Christmas! Cancer Smancer!!!
The only member of the family that wasn't too thrilled with one of their gifts was Stowie, the cat...she received a little black cat collar adorned with rhinestones and a little bell so we can hopefully keep better track of her. She spent half the day hiding and apparently sulking under a bed. I think she's getting used to it today!
I'm doing great and feel very strong right now, only because I know God is working so hard in our lives! There is just no denying it! Whatever our outcome, He is teaching, guiding, strengthening, holding, and every other "ing" in the English language, to us and everyone else who has joined us on this path. How amazing! Even though I may not like that this is happening to our little girl, I can see why God sometimes has to allow this to happen...we cannot deny His existence! He works in wondrous and sometimes mysterious ways, but always, He is working!!!
I will never forget this Christmas and how much my mood and emotions have yo-yo'd back and forth, and that is exactly what they have done. But again, a necessary activity as God uses both my highs and lows to teach me things, and help me understand and appreciate what is important!
I pray that we all will have a new year filled with Hope and Faith and Love...without those three life sustaining words, what good is our existence?
Everyone have a very joyous Christmas season, as it really has just begun! We are to celebrate more after Jesus' birth than we are to before, so let the celebrating begin. I pray that this is a year filled with little daily celebrations that will constantly remind us of what God has given us! The smaller celebrations often times mean the most! God Bless you all and again thank you for being with us every step of the way!
Sorry I've been absent from posting these last couple of days...life has been very good lately. Sicily is doing so good right now, prayers are being answered every minute of the day! She is bubbly, happy, goofy, smiley...she is Sicily! I love it!
I remember sitting in the hospital thinking and praying how much I wanted to see my little girl, the little girl we were used to being around...and here she is. Like I said before, this was the greatest Christmas present we could've received.
Today we return to OKC for radiation and then chemo tomorrow along with radiation the following two days. Today is also our half way mark...we will be over half way done with this part of the journey. Then another chapter will begin with the inpatient treatment...but one day at a time! I'm ready!
After leaving the hospital last time, I couldn't fathom the day we would have to return. It will be a change of scenery as we will be in Tulsa versus OKC, so that helps a little!
I have no idea when I will be able to take our Christmas tree down, and you know what, I'm not anxious to do it! It may stay up until mid-January or even later! It still makes me happy!
Well, I need to get things together for us to go. Tomorrow is Patrick and my wedding anniversary and we'll be apart. But that's life! That's our life, and we still figure out ways to make the most of it!
Sicily had her seventh of eleven radiation treatments this morning. Yesterday afternoon, her siblings got to watch her get her treatment. Of course, Elias was most impressed with the "out of this world, space age radiation machine," for lack of a better term to call it. He thought it was pretty awesome. It should be for 4.2 million...some of which we will be paying for...but it will be worth it in the long run.
When I asked our radiologist last week just out of curiosity how much a massive medical monster like that cost, she reported the price tag, but in typical female fashion became excited when she added, "but we got a 25% discount!" Whoa-Who!!! Who can brag that they saved a million dollars on a "necessary purchase?" Dr. Lisa Syzik can!!! You go girl! I found humor in that!
Sicily is still living out the answered prayers that are being sent upwards...she seems to be feeling good and her counts today were 3300. We couldn't ask for more! She loves being here at her cousins house...two more people to entertain and play with. And they don't fight with her like her siblings! They all get along together really good, though. It's fun!
I think I'll need to take a nap with Sicily today as her treatment was at 6:50 and I'm presumming we'll both be a little on the tired side. Of course I always say I'll take a nap, and then never do. I guess there's some comfort in knowing I can if I want to...not like if I really wanted to and didn't have the opportunity. It's a mental thing, I guess.
Tomorrow is another treatment and then we'll head home to celebrate the upcoming new year together as a family. We have so much to celebrate and be thankful for and I pray for 2009 to be as special and faith strengthening for myself and my family as this past year was. And for all our friends, as well. God is good!!!
Next week, on Thursday, will be our first inpatient treatment...so I'll be soliciting for strength prayers a little early!
Hello all and good Saturday morning, and "HAPPY NEW YEAR" a couple of days late! But that's my schedule these days!
Sorry I've been absent from posting for awhile...we've just been living life! And considering it's Christmas break and all the kids are still home from school, there has been a lot of "living" around here, along with the normal disagreements and arguments between siblings!
Sicily is still doing good. Patrick and I have come to the conclusion after watching her ride her bike and scooter around outside, that chemo and radiation are like sugar and caffeine to her...she has more energy than we know what to do with. And yes, that is wonderful!
I read on a friends mother's site who is being treated for cancer in Arizona at the Mayo clinic that said they want her to "live life around chemo!" Those four words really struck a chord with me as it has been a personal struggle to find a balance between the two...life and chemo. There will be times it will be hard to live our lives during the midst of three to five day hospital stays, but this is still our life and it's the only one we will ever have, so we will need to work hard at making it worthwhile! I'm going to try to think of the chemo as an added activity, like tae kwon do lessons or piano lessons...it's a choice.
We could choose not to do it but how smart would that be? So we choose that this is the best for Sicily and we make our lives as normal as possible "despite" the treatment plan! Again, it will take some work, but nothing is impossible! This life belongs to us, not cancer!
As a mom, I still have the instinct to want to wrap Sicily in bubble wrap and put her on a shelf to protect her from harm. But where is the quality of life in that?
I learned a very important lesson from a very dear new friend, Kelli, who had heart problems growing up but still pursued her desire to play sports, against most doctors recommendations. One doctor gave her the go ahead, again, to his colleagues dismay, but it's a personal decision that she needed to make on her own. I'm happy to report that she survived her volleyball experiences and I believe God put her in my life, among others, as well, to help me make decisions regarding Sicily's life.
Patrick had his own problems with his back growing up and wanted to play football in high school but the doctors were against it. Finally, his mom let him his senior year and that was such an important life event for him! Sicily loves to play sports...any kind. Just last night we had a friendly game of family softball in the front yard. She's a natural. At age three and a half, she knows how to stand and hold a bat and keep her eye on the ball as she swings!
Patrick and I decided we will do whatever it takes to let her fulfill her desires. We'll have a kidney guard made for her and send her on her way! I can't wait to cheer her on in the stands.
Well I'd better get some work done around the house. Today is going to be a beautiful day outside so the kiddos will probably spend most of it outdoors, along with dad! Everyone enjoy the weekend!
Sicily and I will be leaving this afternoon for her last three radiation treatments in OKC then it's off to the Children's Hospital here in Tulsa on Thursday.
I bought a new book the other day on a whim at Sam's because the title of the book really caught my eye. It's a 365 - Day Journaling Devotional by Sarah Young titled Jesus Calling. Needless to say, I'm already so full of hope and inspiration after just reading her introduction and the first few days of devotionals. In her intro, she refers to Psalm 46:10 (my billboard message and all time favorite verse right now) "Be still and know that I am God," as a life-changing verse.
Funny how those words are so instrumental in so many lives. I found this verse at my favorite hobby store and put it up on my kitchen wall so it stares me in the face everyday and is a constant reminder of God's presence, even on days when I may not feel Him, I will know He is there.
Speaking of God's presence, another one of those "funny" things happened to me that can only be explained by God's presence. I was at my favorite store last Friday (Hobby Lobby) and was looking through the clearance isle along with another woman and we began to talk as we shopped. If people were to pass by us, they would've thought we were there together the way we were going on.
After I had left and returned home, I had this nagging feeling of wishing I would have introduced myself to her and exchanged information with her because she just seemed like someone I could be friends with. I had briefly told her about Sicily and her situation and before we had parted, she said she would pray for my little girl.
Sicily and I ran to Hobby Lobby this morning to get something I had forgotten to buy last Friday, and as I was parking, I looked up just in time to see "my friend" walk into the store. My heart started pounding and I got a little anxious...would she think I was crazy for thinking and feeling what I was? I headed through the store and started looking down the isles until I spotted her and it only took a couple of seconds until we made eye contact. She looked excited to see me and when we met, the first thing she said was that she and her husband had prayed for my little girl. We exchanged names and I ended up giving her this website so we could be in contact via email.
I know that sounds kind of crazy and it's not something I would normally do, but considering our life circumstances, I haven't had the opportunity to meet and make very many new friends, outside our wonderful neighbors and some interaction at church. This was another one of those experiences where I feel God hitting me on the head with the obvious. I just continue to try to keep my eyes, ears and heart, mind and soul open to His will!
Back to my new book purchase, as I continue to ramble, when I picked up the book in the store to read yesterdays entry, I was overwhelmed with the words written...as if they were written just for me at this very time in my life. Sarah Young writes the book from what she thinks would be Jesus' point of view...the first person singular. January 4th reads, "I want you to learn a new habit. Try saying, "I trust You, Jesus" in response to whatever happens to you. If there is time, think about who I am in all My Power and Glory; ponder also the depth and breadth of My Love for you. This simple practice will help you see Me in every situation, acknowledging My sovereign control over the universe. When you view events from this perspective - fear loses its grip on you. Adverse circumstances become growth opportunities when you affirm your trust in Me no matter what. You receive blessings gratefully, realizing they flow directly from My hand of grace. Your continual assertion of trusting Me will strengthen our relationship and keep you close to Me." Thank you, Sarah Young!!! See why I had to buy this book?
Well, I've taken up enough of your time today, but I just wanted to share some news. Sicily is still doing "awesome" for what she has endured. We are still scratching our heads, all the while smiling just the same. We are feeling God's blessings and thank each and everyone of you who continue to lift us up!
Sicily is doing great...she loves the extra attention she gets from extended family. She was lucky to get to see her aunt Christy, uncle Doug and cousins McKinsey and Kelsey as they were playing/coaching basketball games locally.
We had a nice visit at the oncology clinic and a good appointment with Dr. Meyer. I love the ladies who work in the craft room...they are beyond wonderful! Sicily is usually very quiet, shy and reserved in public (nothing like her personality at home!!!) but they are able to get her to do a little crafting. She doesn't talk much to others, again, she is not very comfortable with public interaction. I usually have to do the talking for her...she likes to give me a doe-eyed stare when people ask her a question...like I'm supposed to interpret every look she gives me! I do my best.
Tomorrow is her last radiation treatment! Yeah! This went so much better than I had anticipated. Once again, God has strengthened this little girl beyond human belief!
While at the clinic, we were able to personally meet another young lady with whom I have been following her cancer journey via her caringbridge site. I hope her mom doesn't mind, but I'd love to solicit some more prayers for her as they heard some hard news today. Please check in on Morgan, www.caringbridge.org/visit/morgansnowden ...she is another beautiful little soul who has unbelievable courage! I can't say enough how amazing all this young children battling cancer are. And this whole journey has been for us.
Just sitting in the waiting room yesterday at the radiology office, we've meet the nicest most caring people...people who are battling for their own lives and they pass care and concern on to us. I know it must be a heartbreaking site to see a little three year old girl receiving such a scary medical treatment, but she can affect all around her when her name is called and she hops off her chair and bravely marches back to "the room!"
I still can't believe sometimes that these are my shoes walking into the room behind her...shoes of a mother with a child battling cancer. But she makes me so brave and strong. I emulate her behavior the best I can, but I'm still the one behind the wall getting to "watch" her on two little tv monitors as the "washing machine" (the name applied by Sicily to any HUGE medical machine she winds up encountering) does it's job...all the while she remains still. A hard task even for the calmest adult. I can't believe we are almost done with this leg of the journey. It has been very bearable!
In addition to getting to spend some extra quality time with family, it has been a pleasant experience. I will miss seeing the pretty smiling faces on all the techs who have gingerly cared for Sicily during her treatments. A person can't help but feel a connection with anyone who plays such an important role in the care of a precious child. Just like with Dr. Puffinbarger...her surgeon. We were supposed to have a post-op appointment with her but never could get our schedules to coincide. I just wanted her to see Sicily...this Sicily...the way she is when she's feeling good. I wanted her to see how well she "fixed" her! I just couldn't wait to thank her again for all she's done. I spoke to her nurse today and asked her to please convey how wonderful Sicily is doing right now and she said to call her the next time we were in OKC and she would try to get us in to see Dr. Puff. I plan on it!
Also, while we in the clinic today, one of the art volunteers asked if Sicily would want to participate in an art show. She would get paired up with a local artist and create a canvas piece of art which would then be framed and put on display. The night of the art show, she is supposed to get all dolled up and would be picked up by limo and taken to the show where she would walk the red carpet and be photographed by her painting which will then be put up for auction. This is right up our alley. I'm going to work very hard to see if we can swing this. I'll pull out her chemo protocol and count the days in hopes that she'll be in between her inpatient treatments. I just think this would be such an awesome experience for her. She may not understand it all, but boy, it would be fun!
Well, getting close to bedtime. We feel surrounded by love and prayers right now...the only way a person can go through a situation like this. God Bless you all!
Sicily and I made it home this morning. I will be unpacking and re-packing for the next chapter in our book, which starts with an 8:30 check in to the hospital tomorrow morning.
It was kind of hard to come home and figure out where to start or what to do next. My mind has to change gears and refocus for what is coming next. I also came home with somewhat of a heavy heart.
Yesterday morning, while we were waiting for Sicily's treatment, a young woman came in and checked in right behind us. I could not tell her age, partly because I am horrible at guessing a persons age, and also because she hadn't a hair on her head. But she did have the most beautiful eyes, despite their slightly darkened and sunken appearance. Sicily was called back to her room, and as I waited outside her door, the young women passed by. She stopped and smiled at me and in a quiet voice she asked how old my little girl was. I answered, "three and a half." She pouted her bottom lip and tilted her head and replied, "I will pray for her."
I had a hard time swallowing the knot that had just formed in my throat. This young lady was in the clinic again this morning accompanied by someone who I assumed must be her mother. Sicily and I sat quietly in the waiting area with the mother for a bit, when I struck up a conversation to ask her if she was indeed this young woman's mother. She said she was. I then proceeded to tell her how sweet her daughter was yesterday for telling me she would pray for Sicily and before I could finish, she smiled and said, "I know, Julie came home and told me about your daughter." Again, another knot. I asked how she was doing, and she closed her eyes and shook her head and said, "she is not doing very good." Knot number three, which has now made it's way down to my chest. I told her I'd pray for her as well.
I almost felt like I was at a loss for words. I felt like I'm sure many of you have felt when having conversations with Patrick and I...what do you say? Here we were two mothers sailing in the same treacherous sea, but her daughter is not able to tread water as well anymore. But at the same time, "Julie" is worrying about Sicily. Amazing how this whole cancer world works.
I'm still blown away by all the compassion floating all around us. I just want to add "Julie" to our prayers. I know nothing else about her, though her beautiful face will be forever in my mind, and her sweet words in my heart.
God continues to teach me so many lessons and I feel responsible for journaling them so as many people as possible can be touched by Him.
I know our "gum chewing prayer warriors" are hard at work and I know there will be some sore jaws over the next week. Thank you all! The peace and strength I am personally feeling right now is directly a result from all the prayers. God Bless you!
Sicily and I are settled in our wonderful hospital room. It is big, bright and beautiful. This hospital is pretty new and I have to say is REALLY nice. Not too bad of a place if you have to stay in the hospital every few weeks!
She's curled up in her little child sized hospital bed napping. She ordered macaroni and cheese for her lunch, but ended up eating about a third of my salad as it must have looked pretty good to her. Yeah, I got lettuce in her. That's quite an achievement!
I have fourteen pages of info to read about the new meds she will be on. One of the sentences that really pops off the pages when I first scanned over them was, "This medicine is very strong." That's on both the Cytoxan and the Etoposide. She will also be getting Mesna, which is an Antidote used to help protect the lining of her bladder, I believe.
Then, this is the fun part...we will have to give Sicily daily injections of Filgrastim, a Colony Stimulating Factor, in other words it's a medicine used to treat low white blood cell counts. It's supposed to stimulate bone marrow to produce white blood cells so her body can attempt to fight any infections or viruses she may come in contact with. We will start that a day or two after she is released. Looks like we will be here at least until next Tuesday as they are hydrating her now via IV fluids and will hopefully administer the first doses this evening.
They are scheduling a home health visit for when we get home so they can properly teach us how to give Sicily her shots. I don't mind doing it. I used to give myself allergy shots, so I think I can handle it. It will be stressful and emotional, though, to give them to my own daughter, but they have to be done and they will hopefully help her!
That's about all the news I have for now and I will jump back on if there are any new developments. I am still so proud of our little warrior...she just does what she's supposed to do. Someone once commented that she is mature beyond her three little years...that is so the truth. She's amazing!
Love to you all and we can feel the earth shaking with all the gum chewing prayers!
Sicily is doing well. Her chemo didn't get started last night until 9:00...some sort of lab glitch. We were expecting it to start somewhere around 5:00, but you know how expectations go...easier to learn to live without them!
I thought it might be a rough night, but it went pretty smoothly. She wasn't awakened every couple of hours like I thought she would be to use the bathroom, instead she woke up on her own and then woke me up to help her. I warned the nurses that she appears to have a large capacity bladder...and they found out I wasn't kidding. She released 600ml once in the night. And there have been many over 500ml. I'd like for her to go more often just so the chemo doesn't sit in her bladder, but she is on the Mesna to help with that.
She didn't eat a lot of her breakfast, but that is typical of Sicily at home. Uncle Robert and Aunt Pat came and visited us yesterday afternoon and brought Sicily an adorable pink and white OU sweat suit. She wanted to put it on right away, and guess what she's wearing again this morning, despite the rootbeer float stain on the front?.
Patrick and the kids also came by for a visit last night and it was pretty much a three ring circus. The older two brought their homework and managed to get it done.
Sicily is chomping at the bit right now to go for a walk around the 3rd floor, so I begged her to let me jump on here and journal for just a minute. By the way, we are in room #321. I'd better go as she keeps saying, "Ready!" And it's in a statement form, not a question! I'll report more later on how the rest of the day goes.
We had a good day all in all. Sicily is wearing out paths walking the third floor hallways. She is such an energetic little soul that she doesn't want to just stay in her room and watch tv. Exercise can only do her good right now.
She took a nice nap this afternoon and has had a decent appetite. I'd still like for her to eat more, but at least she does eat some.
Patrick is with her now and she started another chemo treatment at 7:00. It drips for an hour and then she gets another one for an hour. So far she hasn't had any sort of reaction. Her numbers will drop drastically, but that is to be expected. We'll have to be even more careful and take extra precautions once she comes home. But nothing we can't handle!
I'm home trying to catch up on a bit of laundry. Before I left, I let Sicily call home to leave a message on the answering machine for Stowie the cat. When I came home to listen to it, it just made my heart ache to be with her. But daddy gets his turn, too. It's such a relief to be only twenty minutes away from them right now. We can hop in the car and visit in no time!
Well, better get productive. Thanks for keeping us so uplifted with the thoughts and prayers!