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What started out as a site to update on our daughter's cancer has thankfully grown into a site to update on our beautiful family of four. Enjoy our journey...

Monday, January 28, 2008

better late than never??!

Okay, sorry Amanda...I know I promised these last week!

I don't have too much to report. We had a pretty low-key weekend. Charli had her 18-month check up on Friday - she did great. She had to get three shots, but was so brave - hardly any tears...wish I was as tough!! She is still long and thin, and going strong. We estimate that she knows between 25-30 words, I think she probably knows more. But, believe it or not, she doesn't talk that much. I wonder where she gets that from, must be me!!

This weekend Charli helped clean around the house! Saturday she helped me dust, and did a great job. Later she helped her dad SWIFER the kitchen floors...and I must say that she by far does a much better job than me!! Sunday she thought about running the vacuum, but decided it seemed a little to mean!!

She is big into playing hide-in-seek, and will play with anyone she meets! She tried to play with a nice stranger in Target Sunday, but I guess the stranger didn't want to play!! Tonight she decided to walk around the kitchen in my heels, which she put on while we were just standing around talking.

Charli is really gaining major personality this week. Everyday we can see her change in some amazingly awesome way! She is great at communicating, which I have always said...but she understands so many commands, it is hard to believe.

It looks like Charli has sustained some damage from the chemo she received over the course of 2007. She has a perfect line of damage across her top teeth, and it looks like another is appearing on the bottom as well. Because of the uniformity, we are all confident that it is from the chemo and not some random tooth decay. That and the fact that this kid never has any sugar...it's too bad that this is coming up - but in the scope of things I know it is nothing! However, it is just another reminder of something that will forever be apart of our lives. I am just sadden to think that Charli will have to continue to suffer from it. Hopefully she won't have any pain with it. Eventually we should be able to tell if it has done any damage to her permanent teeth, but I am not sure how long we will have to wait. We will be taking her to a pediatric dentist in the near future.

Enjoy the pictures! It seems like we should have more, but she keeps us so entertained we forget to snap the pictures...Have a great week everyone!!


I can feed myself...a little messy!

mommy's got it made!!!!

night-night!

do these shoes go with my shirt?!

these shoes are made for walking!


peek-a-boo!!

look at Charli's crazy hair!!


cheesy!!


who put this pillowcase on me?!!

check out the rocking locks!!!!

Friday, January 25, 2008

Pennies for Patients

Today I spoke at an assembly in Humphrey to the K-12 students. I want to start by saying that they were amazing! Everyone was so well behaved, and the had GREAT questions! Their campaign will last three weeks and at the end of it the money they raise will go to the Leukemia and Lymphoma Society. Also, today they announced that they will be raising money to duck-tape one of their teachers to the wall!! Which ever teacher has the most votes will be taped to the wall! $1 will buy three feet of tape and one vote! I can't wait to hear who wins...what an awesome idea! AND...today they said that any money that is raised for that will go to Charli - how awesome! We will be sure to donate that money to an equally awesome organization in their name.

After I quickly introduced myself I showed a five minute video of Charli - so the kids could "meet" her. It was so funny to hear how the kids reacted to seeing her different pictures! Some got giggles, some got "oohs" and "ahhs", and some got "ahhh" is a sad way. I will try to attach the video for all of you to see as well. The biggest hit (and miss) was the picture of her in her John Deere hat!!

After the video I gave a talk about what went on in our life the past year. I really tried to word it so the kids would understand and "grasp" it. It was difficult because I was talking to a diverse crowd!

At the end the kids asked so many great questions! It was so cute!! Here is a sample of some of the hard-pressing questions I was asked:
-What time does Charli go to bed?
-When does Charli wake up?
-What is Charli's favorite color?
-Has Charli ridden on a tractor?
-Does Charli's daddy do tractor pulls?
-Does Charli like CASE tractors too?
-Does Charli really eat dog food?
-How did she get cancer?
-Can she be around people who are sick?
-Will she be able to play sports?
-Does she still have cancer?
-When is her birthday?
-What does she dream about?
-Do you go to the Relay for Life?
-What was it like for you and your husband when Charli was sick?
-Was it hard to live with someone who has cancer?
-What color are her eyes?

Oh, there were so many cute, fun, and great questions asked. They really did a GREAT job and were so well behaved!! I will hopefully keep you posted on how they do with their fundraising efforts, as well as which teacher gets tapped to the wall!

A great B-I-G THANK YOU to anyone and everyone who was involved with the assembly today. I really enjoyed letting you in on Charli and her journey. And, thank you for making me feel welcome! Chad and I even got little hugs from a student on the way out, along with well-wishes for the future. They were all truly great kids!

Best of luck with your Pennies for Patients campaign, we hope you raise a TON of money!!

video

Tuesday, January 22, 2008

Clarification

I want to let all of you know that I did not REALLY get "Mother of the Year"!! I was just making fun of myself for the big mistake I made while brushing Charli's teeth! I felt like just a jerk and a HORRIBLE mom!!!

I PROMISE to get pictures up this week. However, I have been asked to speak at a school assembly in Humphrey Friday, so I am devoting every free second to that project. I hope it goes well...

Thanks for checking in on us, sorry I don't have anything more exciting to report!!

PS. Charli can now say "duck", "quack", "moo", "kasper", "wynston", "love you", and of course the favorite "no-no", "uh-oh", "oh-no"!!!!

I forgot!!

I forgot to say thank you to "The Bernt Family" for the beautiful flowers they sent me last week in honor of my new job, and our new "fresh" start for 2008!!! I have kept them at work, so all the patients and their families can enjoy them...they are beautiful!!!! THANKS AGAIN!!


PS - Pictures to come soon, I promise :-)

Sunday, January 20, 2008

Mother of the Year - 2008

Okay, I wasn't going to make this announcement for a few weeks, but I just can't hold it in. I realize that many, if not all, of you "other" mothers out there apply for this award every year, and sadly only one wins. Generally, this award is given at the end of the year but I was recently told that I went above and beyond! The following certificate was delivered via telegraph earlier today...

TO: Brenda K. Preister, mother of Charli Ann
January 20, 2008

We are pleased to announce the 2008 Mother of the Year Award is formally given to the above mentioned, first-time mother of one. This award is given based on one particular event that seems to be unbelievable. Not only does this award prove "motherly-ness" but also the sheer genius this mother must process. In order to inform all who view this certificate, we will offer brief recap now...
It was a typical Sunday morning in their home. As Brenda (the mother) went to brush Charli's teeth, loading the brush up with LOTS of toothpaste, she noticed that Charli made a funny face. This seemed odd because in the past Charli has truly enjoyed this time. After some time had passed "mother of the year" thought she better see why Charli was acting so odd...so she tasted it. In the midst of all the "goings-on" 'MOTHER OF THE YEAR" put Teeth/Gum/Mouth NUMBING gel on the tooth brush, rather than toothpaste. Although this was cheery flavored, Charli still seemed to notice the odd difference.
It is because of this single act that we feel confident honoring Brenda as the MOTHER OF THE YEAR AWARD receipt.
Please...if you see her, don't forget to mention her moment of glory.



Gee...I have never been so proud...

Friday, January 18, 2008

update

I must first apologize for the lack of pictures...I haven't uploaded any this week!

The week has gone quickly! Work went really well this week, I am excited to do it again next week - I hope I can can survive on my own!

Today I got to enjoy my first Friday off...it was nice, but the day went twice as fast as a "working" day!! I was able to catch up with a few friends I hadn't talked to for a very long time, and that was priceless!! I also ran many errands, and should free up the weekend a lot!

This week Charli did a couple new and cute things! Chad brought her to work one night and got to see all the neat toys! As they left she said "I want ball!!", then she cried because she had to leave!! Tonight, as Chad was rocking her before bed I walked out of the room and said "love you Charli!", and she said "love you" back...ahhh!!! She is learning and understanding commands more and more each day, it is amazing!

It is super cold here, so I am not sure what we will do - but hopefully we will find something "super-fun"!!

Have a great weekend ya'll!

Monday, January 14, 2008

this is the world we live in...

I forgot to mention this story Sunday night...

Every Sunday morning Chad gets to do the morning thing with Charli...get her up and do breakfast, and just do the general playing first thing in the morning, she is so happy and it is the only time he gets to enjoy that.

Well...when I joined them Sunday morning Chad said "I have decided that Charli does have some red in her hair". REALLY?!!!!!

I got such a kick out of this! He has been in denial about her red hair for the past 18 months (less the 6 weeks that she didn't have any!)! I said "well yes Chad, I don't think people just randomly say she has redish hair for no reason!!" What a dork!

I know that many of you will get a kick out of this, so I had to share!!

put your feet up and relax!

Just wanted to post a quick note to let ya'll know that I did survive my first day! Thank you for all the nice notes!!

I had orientation from 9:00-12:15ish and took in a lot of information. I went to W & G (Wiggles and Giggles) at 1:00 and took in even more information until shortly after 6:00!! I think tomorrow will be a bit easier because I will be able to see my predecessor in action, and Wednesday and Thursday she plans on sitting back and letting me do the work :-) Then, next week, I am on my own! I am very nervous - there is so much to learn!

Everyone there is so super nice and seems to have such a positive attitude!! I think that I will really enjoy working with everyone there, hopefully they will enjoy working with me too! I saw several kiddos come in today, and from the looks of things it seems that many of the kids keep the same schedule, so I should get to know many kids and many families in the area.

I have a lot to learn in the next three days, so hopefully I can take it all in and actually remember things!

Have a great week everyone!!

Sunday, January 13, 2008

I'll always have you

Our weekend wasn't too eventful, which is kind of the way we like them!


Friday night, as I posted before Charli went to bed with NO pain medicine Friday night. She didn't even wake up needed any, I was so surprised. She is the toughest little girl I know...toughest person I know!


Saturday I went to Grand Island with my mom, I had fun! I wanted to look into getting a new computer. I have no clue if mom enjoyed herself but I did. When I got home I realized that I can't remember the last time I went shopping with my mommy! We got my computer and spent the rest of the afternoon looking for some new clothes for work! We had a nice relaxing lunch and didn't seem to be in a rush - which felt nice. When we got back to Columbus she headed home to pick up dad and they went out to visit my sister...for Shawn's birthday (tomorrow).


Charli and Daddy stayed home, and enjoyed themselves...a lot! Charli does all sorts of weird things when she is home with her dad! She feel asleep eating this time, last week she feel asleep on the floor while playing/reading his magazine! They really enjoy getting to spend the extra time together. I always feel guilty leaving, but know that they like it when I am gone!
Today we all stayed home! We did venture out for groceries and a trip to Wal-Mart and Tractor Supply!!


We have our "Charli" back now, and it is great!! She has been eating really well, and sleeping well...she is so happy and just so much fun to be around! She is getting so silly. And, it is monkey see, spider-monkey do now more than ever! The good stuff, and the bad stuff!! She loves to help clean up her toys and throw things away. She really LOVES her fridge radio that she dances to about 100 times a day! And, she is understanding so much. She can get a toy that is a specific color, put things in order of size to fit together, and she will saw both Wynston and Kaspers name! And...she is trying to say "Amanda"! She also is learning some animal noises...her best is the piggy!!


Tomorrow is my first day...wish me luck!


There is so much more I want to say about what Charli is doing, but I guess ya'll will just have to visit her to see for yourself!!



helping my brothers eat!

just got done feeding myself pudding, a little messy!

trying to pass the time while waiting...

getting ready to go to surgery


after her "episode", tuckered out

"shhh-shhh"


asleep in the highchair...she ate while sleeping too!


LAST port access!

ready to walk into the hospital, look happy don't I?!

I LOVE shoes!

cute pink bibs...and there is Kasper!



"prepping"

playing and entertaining the nurses!



Saturday, January 12, 2008

thanks!

I just wanted to say thank you to all of who you have sent emails or called since reading last nights posts, your concern is appreciated.

I should have clarified a little better about what made her act that way, just because I know I assumed you did too I guess!!!

Charli received a medication prior to going into to surgery/CT and receiving general anaesthesia. This was primarily to relax her, but also to give her an amnesia affect, so she wouldn't remember going back to surgery, or being scared, etc. Unfortunately, when children do not have enough time between this drug and the general this can happen we were told. The way I took it was that they didn't have enough time to "sleep off" the first drug. I don't really know the best way to explain it.

However, you can rest assured knowing that this was not caused from the general, and this has never happened from sedation. In the future when she goes back for her CT scan only, she will have sedation and we won't have this problem. If she should need to go under general again...we will not be using this "other" drug!

Thanks again for all your concern, I just thought I better shed some more light on it since I wasn't too clear last night.

While I am here, I will let all of you know that Charli slept great last night. She woke up ready to go at 7:00 this morning. She is now eating breakfast, and has decided to share the last few bites of her banana with brothers. Isn't she sweet :-)

I will try to post pictures tonight...but if not tonight, tomorrow! Have a great weekend everyone!

Friday, January 11, 2008

Curve Ball

Well, let me start off by saying that Charli's port was successfully removed!!

Now that I have said that and put any fears aside, let me tell you about our day. Wow, today was probably one of the hardest we have had...at leaset it seems that way now.

We got up and on the road as scheduled, no problem. Charli didn't sleep much on the way down, which didn't surprise me a ton. She is big into watching out the windows now, so she gets wrapped up in that and forgets that it is too early to be up! We arrived at Children's at 7:00 on schedule and things proceeded as normal! Charli was taken back for her CT/surgery shortly after 9:00am.

At 10:15 the surgeon came in and confirmed that the CT report was favorable. Charli's tumor has shown no change. He was on his way to remove the port. In the beginning we were expecting her to be done around that time, so I was a bit surprised. No biggie though. Around 11:00 he came back and and told us that she was done and that everything went well...no problems! She could be a bit sore, but nothing too terribly bad.

At 11:30 Charli arrives in the CARES room. She was a bit shaken up you could tell, but she just had surgery so it was expected. She was very concerned with the oxygen monitor on her finger. In fact, when she woke up the first thing she did was hold up her finger and say "uh-oh" and she discovered the foreign object on her hand! I rocked her and loved on her while she drank a glass of juice.

A few minutes later she started to get very fussy. I tried moving positions, standing up, etc. We moved the oxygen monitor and took the blood pressure cuff off, as she tends to be very annoyed by them. I should also mention that when they brought her back in the room, she was very cold - with a temperature of around 95.6 or so.

She was getting more agitated as the seconds went on, and we noticed that her lips were turning blueish, her oxygen was dropping...but I assumed it was because she was crying so hard. Soon enough her oxygen level dropped to 50 (should be at 100) and she was cold as ice, lips were silver/blue, and her skin was just a dusty grayish color - hard to explain. Looking back on it, I should have been very scared. After a minute or two of receiving oxygen her color came back to normal and the oxygen level raised back to normal as well. However, the fits and the crying were just beginning.

Charli was like a child I have never seen before. Keep in mind that this behavior went on for a good 30 minutes, taking Chad, a nurse, and myself to truly keep her from harming herself. She was grabbing handfuls of my hair and yanking them...pulling chunks of hair out (it hurts now!), scratching herself and us, hitting, pinching, pulling, and moving all over. She would thrust her back and yank her head all the way back as her eyes would roll back and she would just scream. There was nothing we could do. We both tried holding her, we tried offering her a drink, cartoons, toys...nothing worked. Finally, I think she just tuckered herself out. Now that I think of it, it was like she was possessed. I didn't have a lot of time to truly think about it at the time, which is good because I would have lost it. She was like nothing I had ever seen before, and if I didn't see it with my own eyes - I would NEVER believe it. We were told that it happened because of a reaction to some medication. After she woke up from her 30-45 minute nap she was completely back to normal. I would never want to experience this again, by far the hardest thing to see. If this would have happened on our first visit...I don't know what I would have done. Luckily for us, we were a bit "seasoned" to watching Charli "suffer", as sad as that is to say.

But, after it is all said and done - she is doing well. We will not use the medication used today, so we should never have to worry about this happening again. THANK GOD, not sure any of us could handle it. Her face is all scratched up. Chad, a strong-grown man could not even hold her alone, it was just terrible.

When she did wake up and was feeling better the nurse said it was time to take the IV out, at that time Charli perked up and said "uh-oh" like she knew it wouldn't be fun! But, she didn't know the difference!!

We discussed the option of removing the remaining tumor, and it was suggested that unless there is a relapse or direct pain associated because of it...it would be best to just leave it as is. We will go back in three months for a follow-up CT as usual.

We left at 1:20 and came home! She ate and drank well tonight, and played just like normal! Grandma and Grandpa Borg came down and she did a lot of showing off for them, which they loved of course! We didn't give her any pain medication, she is truly the toughest person I know! She had surgery today...and no pain meds. I take pain meds for such silly things in comparison.

Thank you for all the phone calls, emails, prayers, and well-wishes. What a great way to start '08, and the start of a new chapter in life for Miss Charli. Although today was a tough day for us, it is a day to rejoice. The "freedom" we are able to feel after today compares to nothing I can think of. Knowing that cancer will never be far from our mind, and it never should be, but knowing that it is not attacking our daughter anymore...there is nothing I can say that is better than that.

It is late, and I am tired - so I am going to go now. I am sure there is more I should say and more I want to say, but will post it later this weekend. Thank you to everyone, you really have no idea what all of you mean to us.

PS. A BIG hi goes out to Julie and Vicki from Children's!!! It is so GREAT to have your faces there to greet us when we arrive for these types of things. And, having your familiar faces care for our baby when we are not able to, means the world to us! You do a great job, and we want you to know that you are appreciated and thought of often!

Thursday, January 10, 2008

BIG day

Today must be a big day, at least Charli thought it was! At 4:30 this morning she wanted to get up and play, her daddy tried to get her to go back to sleep but she wanted to play with her teddy bear. However, it did pacify her until 5:30 this morning, when she wanted...NEEDED to get out! I tried to rock her but she wanted nothing to do with it! She wanted her build-a-bears, her stuffed animals, her new baby, her animals, and finally...her BROTHERS! Heaven forbid if she can't see those dogs first thing in the morning! So, we all got up and "played". I use that term loosely, because it was mainly me laying on the floor "playing" asleep while she crawled all over me!! Sad, isn't it?! Shortly after I realized there was no going back, so I gave her a few Cheerios and some milk to drink while I brushed my teeth, etc. When it was time for me to get ready for work, I "locked" the three 'kiddos' in the living room while I got ready. She did great! Normally this brings on tears, but I guess it was too early! I realized that there was total silence for about five minutes and then panicked! Much to my HAPPY surprise, she crawled herself up onto her toy pile and was playing on it, in it, and with it! Everyone was very well behaved! Off to get her dressed and out the door we go. It was a good morning despite getting up much earlier than planned. Get to Lynn's (daycare) and just GUESS who is sleeping. Little punk, who does she think she is getting ME out of bed before 5:30 and then trying to wuss out on the day at a measly 7:30!!! So off to playland she went! She keeps so busy there I don't think "tired" is in her vocabulary while there! Tomorrow when we MUST be up and on the road shortly after 5:00 I am sure it will be a struggle for everyone, ironic I guess?!!



Today was my last day of work at Paraclipse. I am sad to leave! I guess it happens everywhere, but you get comfortable where you are and with the people you are with. But, in my experience you can't grown if you don't change...so off I am I guess! Having gone through all of Charli's "things" (including the birth of her!!) I will always remember the people and how everyone seemed to rally around us when we needed their help. Don't get me wrong, I am excited for my new path...bitter sweet I guess!



Tomorrow is the THE day we have been waiting for for nearly a year I guess. Odd to think that for over half of her life she has had this port in, no wonder we are "attached" to it. With it brings a sense of security I guess. We have been very lucky to have no infections or problems with it, so it hasn't been the nuisance it is to some. But, taking it out means only good things. And, it is one milestone I will never want to experience again. We will be in Omaha by 7:00, with her CT scan at 9:00. Once the results have been confirmed the port will then be taken out. Start to finish, port removal and CT scan *should* be under two hours I was told. Since we are doing this first thing in the morning I hope for no delays...but that has yet to happen! So we will just have to see how our little fighting "spider-monkey" does! We expect to be home later tomorrow afternoon, minus one "port". I know that Charli will know it is gone. Sadly, she will pull up her shirt, point to her bellybutton and say "button", then pull it up more and point to her port and say "owie". Good news...when it is gone, the "owie" will be gone too!



I am cautiously elated with my life right now! God has been so good to our family, I want to say "what have I done to deserve this!", but I know He doesn't work that way. Somethings in life happen no matter what you do or don't do in your life. It is this simple belief that gets me through. I believe this and would preach this with out a single doubt. I know that good things happen to good people, I also know that bad things happen to good people. This is called LIFE. I believe that we do get out what we put in, but we also have to accept some of the things that are just ours. Do I think God picked Charli to get cancer, yes. Do I think He was punishing her or her family, absolutely not! Do I think that God wanted Chad to suffer his entire life because of his accident in 1999, no. Do I believe that there is a higher reason for why it all happened...without a doubt. Some things in life are definitely easier to see and understand...while others will always remain a mystery. But, it is my faith that there IS a reason that helps me understand that sometimes life isn't fair.



I guess with leaving my job, starting a new one, and having Charli's surgery tomorrow...I am feeling like another new beginning is here for us. Sorry for getting on my soapbox...thanks for reading!



I imagine I will post a little something Friday evening just to reassure all of you about Charli's surgery, etc. If not Friday night, expect something Saturday morning. And no...you are not bothering me if you call to check in on us!

Monday, January 07, 2008

snow snow go away!

On Sunday we went out to play in the snow, and Charli seemed to have a good time! We didn't stay out there too long, since she is still fighting her cold - but I thought some fresh air might do her some good.

I felt like a "real" mom last night...I sewed a pair of Charli's pants!! She somehow tore the side! She is in her bed, not to happy about bed time. However, two minutes before she was so relaxed on my shoulder as we rocked. And, two minutes before that she couldn't stand up on her own! Mood swings anyone?!! Ahh, some quiet!

Just as a reminder, I know a few of you have asked, Charli has her port removed this Friday (the 11th). We will need to be in Omaha by 7:00. They will also perform a CT scan Friday. We expect to be home that afternoon. Charli won't be able to eat after midnight Thursday night, lucky we *hope* she will be under "general" by 9:00...which is only a bit after her normal breakfast time, although she doesn't generally get up at 5:00 either!! We hope for a smooth day, but won't hold our breath. Please keep Charli in your prayers that she can kick this cold before surgery, so she has one less thing to work against while she heals.

Enjoy the pictures....






I can't get up with all these clothes on!

What is this stuff?!


PEEK-A-BOO!

playing shy!

Kasper...thank you for teaching Charli to crawl on the furniture. One less thing for me to do...naughty puppy!

Who do you think had more fun?!

mmm, I am not so sure about this!!


look at that priceless grin!

1-2-3 JUMP!


so, this is what "knee high" means!

Another Angel Watching Over You

www.caringbridge.com/visit/jillianzuelsdorff

Jillian has earned her wings this evening, a heart breaking loss for the world. Thank you to those of you who were able to leave her family encouraging words over the weekend.

Sunday, January 06, 2008

Please pray for Jillian

Please visit this site and learn a little bit about this strong girl, and say an extra prayer for their family. Sadly, the mother does not expect her baby girl to make it through he night. Jillian relapsed in December of 2007.

www.caringbridge.org/visit/jillianzuelsdorff

Friday, January 04, 2008

playing catch up...

Sorry for posting *like* five times today...but I had the time! Here are some pictures from the past week or so!











Charli has successfully learned to play the harmonica!





look at all that hair!!!



THIS is what happens what daddy changes my diapers :-)





I am SO much cuter than my mommy...especially in HER hat!!




Daddy says "look at these guns"...Charli says "ha ha ha"!!




PEEK!!

I am part monkey :-)


relocating

I have been so busy with Charli at nights and just down right exhausted that I haven't mentioned this before, so I am sure many of you already know! But, I am relocating!

I have accepted a new position, and will be changing jobs. Starting on the 14th I will be the new Office Manager for Wiggles and Giggles in Columbus. They are a pediatric physical and speech therapy clinic. They do great things for so many children in the area, I am very excited to be a part of it. I am replacing a lucky mom who is going to stay home with her little boy...good for her! They are part of the hospital, however they are located downtown.

It is sad to leave my current job. I have been with Paraclipse for 2 1/2 years and have meet many nice people here. They were very supportive of our family when Charli got sick and I know it wasn't always easy on them to accommodate our situation, but they always made it work. So, I do have a lot of guilt leaving. Hopefully, they will find my replacement before I leave next week so it won't put anyone out too much. We'll see.

With my new position a few new changes and adjustments will need to be made within our family. I will actually be working Monday thru Thursday 8:30-6:00. This means that Chad is now going to be picking Charli up each night, and will have to work less hours. But those of us who know Chad know that this means he will just go into work at 3:00am now, thus not cutting any hours, just putting in half a day before most of us get out of bed! I am looking forward to having him home each night, and I KNOW he is excited to have the alone time with Charli. I will greatly miss picking her up each night. But, in trade I will have Fridays off! Yay for me :-) I am really looking forward to the new adjusted schedule. So many of her (and my) appointments can be scheduled for Friday's...eliminating the need to take time off as much. (knock on wood)

I truly think this new position will be a good fit for me, and our family. I am looking forward to it. This position will be change from the "sales world" I have been in for the past 5 years or so...but after the year 2007 - I welcome new adventures with good endings!!

Change is good...

ER visit

Charli has not been feeling well all week :-( She has had a cough and runny nose that just seems to be getting her down. She has done well during the day when she gets to play-play-play all day with her friends. However, when she actually has to slow down for the day (while at home of course!) she would get very fussy and we could just tell she didn't feel good.

Last night around 6:00 she spiked a fever. Because she still has her port (until NEXT Friday) we had to take her in to get blood work done to rule out any infections. Before doing the blood draw they did look her over pretty good and discovered an ear infection. This is most likely what caused the temperature. But, we can not be too safe so she did have to have the blood drawn from her port. She is such a trooper. Imagine this...being held down on a bed and having large needle poked into your chest (into the port). Would you cry and make a fuss? Charli did not. She is so tough and strong - all the nurses and doctors always comment on how well she tolerates all that she goes through. Now...she doesn't like being held against her will, so she was a bit upset about it...but nothing like she should be! While we were waiting to access the port and again when we were waiting for the initial report she so calmly slept on my shoulder. How peaceful and wonderful it was for me!

The initial blood work came back looking okay, with her white count where it should be. However, they will still do the blood culture for two days to make sure there is nothing. In the meantime she is on an antibiotic for 10 days and ear drops as needed. I hope that everything clears up and she is "good as new" before having to go to Omaha Friday. I would hate for the surgery to be postponed due to her being sick. So please, say your prayers!

I read on another mom's blog today about her daughter who was complaining of a stomach ache. And she said something that rings true for me. When your child is a cancer survivor or warrior nothing goes unnoticed. Without sounding negative, I see the weird looks a lot of people give me when I express my concern about Charli being sick or acting "funny". I can feel the "you are over reacting" vibes you send me! However, the pit is always in our stomachs that it is more than meets the eye. And, as this mom said...unless you are a parent of a child who is fighting or has fought cancer you will never understand the pain that any "off" movement gives. And it is true. I can't remember who I told this to a few days ago, but I said my head tells me that Charli is just fighting a cold and feeling yucky, but my heart always fears it is something more. Some of you may remember that I told myself for three weeks (before her diagnosis) that it must be her ears, teeth, etc...prolonging her actually diagnosis. So...hopefully most of you can try to understand why we are the way we are. But I realize there will always be those who think we are nuts and we need to just let our child get sick like a "regular kid". The thing is...she isn't a "regular" kid!!

Bottom line - we are confident she has an ear infection and should be feeling good as new in no time! PRAISE GOD for this. Oh, and this is her FIRST ever ear infection...we are very lucky to have made it this long!!

many updates

I will be posting several updates today, simply because I don't want to cram all the information into one post. I would like them to have individual attention!

I would like to deeply thank all of you who have gone to visit William's site and left notes of inspiration and encouragement for his family who is left behind to continue their fight. I noticed many names of friends and family members...and I want you to know that it is appreciated by me but most importantly their family. I also think it is amazing to hear and find out that so many of you also follow other stories of children I have linked too (and many other children I have not). Just getting the word out about these diseases is important because so many people know nothing about them. I am honored that I know so many of you who have been inspired to support these other families.

Also, I would like to thank all of you who continue to come in and check on my darling little girl! She means the world to me, and knowing that there are people out there who love her and care for her like you do...is priceless. She is a blessing put on this earth for all of us to enjoy.

The Littlest Soldiers

The Littlest Soldiers

The medals on our chests
Are broviacs for meds
Helmets won't stay on
Cause no hair is on our heads,

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play,

We fight with honor and courage
No Marine could do as well
We are only children
Living in this hell,

So bring on the medals
The purple hearts of wars
The gold cross, the silver star
To place upon our scars,

For we are the children of cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our REWARD!!

Wednesday, January 02, 2008

I hope you never have to understand...

Some of you know that William is the first "close" NB death we have experienced. I am having a hard time with it, I won't deny that. The following poem I have seen and been sent numerous times. However, tonight my mother-in-law sent it to me and I thought I would post it in Williams honor. What a year 2007 was for many of it, and as this poems says...I hope you never have to experience what we have...however until you do, or unless you have, there is just simply no way for you to understand.

I hope you never have to hear the words, 'Your child has cancer.'
I hope you never have to hear, 'the prognosis is not good'.
I hope you never have to prepare to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.
Look at you with fear in their eyes and say, 'Don't worry Mommy, everything will be okay.'
I hope you never have to hold your child as they vomit green bile,
I hope you never have to feed them ice chips for lunch,
I hope you never have to watch the 'cure' you pray for slowly take away their identity, as they, lose their hair, become skeletal, swell up from steroids, develop severe acne, become barely or unable to walk or move, and look at you with hope in their eyes and say, 'It's going to be okay, Mommy.'
I hope you never have to stay in the hospital for weeks, months or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.
I hope you never have to see a Mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, 'there is nothing more we can do.'
I hope you never have to watch a family wandering aimlessly, minutes after their child's body has been removed.
I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.
I hope you never have to see a child's head bolted to a table as they receive radiation.
I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.
And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'
I hope you never have to face the few friends that have stuck by you and hear them say, 'Thank God, that is over with,' ...because you know it never will be. Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to 'normal'. While living in mind-numbing fear that any one of these tests could result in hearing the dreaded words... 'The cancer has returned' or 'the tumor is growing'.
And your friends become even fewer.
I hope you never have to experience any of these things,
Because...only then...
Will you understand....
Written by: Carol Baan

With a Sad Heart

It it with terrible sadness that I post that an amazing little boy, William, from Lincoln, NE became an angel this weekend. Please visit his site and leave a supportive and heartfelt message for his mother, father, and older sister. William fought NB and we met him with his mother and father at the Angels Among Us fundraiser this past November.

www.caringbridge.com/visit/williamschultz