Walk for LIFE

made by Grandma & Grandpa Preister

(Charli had 6 or 7 total, including one from Grandma & Grandpa Borg and other family and friends)

this was taken right before the survivors lap


WOW. What an amazing event to take part in. The sea of purple was overwhelming, bringing me to tears more than once.



All survivors wore purple shirts.



Opening ceremonies started around 7:00 with awards and honors given. The first lap was reserved for survivors only. Charli was the youngest, but sadly not the only child. We saw two other children under the age of 6 and I know there was at least one teenager that should have been there, not sure if he made it or not. The second lap was for caregivers and survivors. Grandpa and Grandma Preister came down and were able to take part in that lap with us. I was so glad to have someone there with us. Chad and I didn't give any thought to wanting family there for/with us until after the fact. The first lap was so emotional, everyone was clapping - for the entire lap. Of course it was happy clapping, applauding the strength and courage of all the survivors. It was bitter sweet for me. Before the lap all survivors spoke their name and how long they were cancer free into a microphone for all to hear. I said Charli's name "Charli Ann Preister"..."still in treatment". The person holding the mic interrupted and said "baby Charli Preister". That was hard for me to hear, I am not sure why that moment was hard...but it was. It was after that, that we took our first lap. We ended up taking a few laps around.



Charli was popular! Anyone who noticed she was in a purple shirt came over to talk with us and meet her. I know it breaks everyone's heart to see such a small child struck with this illness. We were blessed with so many kind words from strangers last night, and from those of you who we knew.



Grandpa and Grandma then offered to stay at the house so Chad and I could go back to the walk for the luminary ceremony. I am so glad we were able to do that. We did not stay to hear them say Charli's name, it was 11:00 and they were only to the "E's" they had so many names to say. However, we did get to take part in a touching poem, the silent candle-light lap, memorial song, and a memorial video.



It was a great experience. So sad to think of all the people effected by the event that brought all these people together.



Another time I will tell you about a very neat lady I met...Ben Hoover's mom, Launa. She lost her son five years ago, he was 18, to cancer. She did amazing things this year. Bless her heart. I am lucky to have met her.

I recommend that everyone take part in the Relay for Life in some way or another. I know that I have posted that they do not donate a lot of funds to childhood cancer, and that is correct. However, the feeling that you are left with after walking away will stay with you for life. At the end of the day, it is about the willingness to fight for a cure that is what matters.

11 months has come and gone

It is so hard to believe that 11 months has come and gone, and my baby is on her way to being one year old.

Two seconds ago I got a call from my sister-in-law, Kara, who is about ready to have her baby (any day now!!) and hearing her talk about the baby boy that is about to be brought into this world, and to hear the excitement in her voice is just amazing! I remember the feeling Chad and I had before Charli was born. Not truly knowing how our life would change, yet knowing that it would never be the same. Needless to say, we had no idea what was to come! The anticipation of waiting to bring a new life into this world is priceless, and I believe there is nothing like it! Obviously, once they baby arrives the REAL miracles just begin...but nothing compares to the preparing for the baby!!!

Anyway - here are some new pictures of Charli! We are going to the Relay for Life tonight in Columbus, Charli will take part in the SURVIVORS lap. I am not sure how I feel about going, I think it will be very emotional, probably in a good way - but I am a bit scared either way. Then, at 10:00 our GREAT friend Linda is coming over to stay with Charli so Chad and I can take part in the lighting of the luminaries. I will take a lot of pictures, and try to take in all that is around us.

Also, I want to take a quick second to thank all of you from the BOTTOM of my heart for all the love and prayers you have sent out for our little girl. I know that modern medicine does wonders when it comes to cures and health, but I know that at the heart of everything there is God. Thank you for bringing Charli to the top of His list, He has taken amazing care of my baby...and for that I am forever thankful. I pray that God will bless all of you, the way he has blessed me.

my 11 month birthday!

Bedtime stories with daddy!

me and my cousin Derek, I am so cute in hats!!


this is my cousin Colton, we had a picnic this day! F-U-N

beep-beep

everybody loves their grandpa!

let's say it again

I know I have posted this before - but it has so much more meaning now then
it did in the past, and I wanted to share it again!



Before I was a Mom...
I slept as late as I wanted and never worried about how late I got into bed.
I brushed my hair and my teeth every day.

Before I was a Mom...
I cleaned my house each day.
I never tripped over toys or forgot words to a lullaby.
I didn't worry whether or not my plants were poisonous. I
never thought about immunizations.

Before I was a Mom...
I had never been puked on. Pooped on. Spit on. Chewed on. Peed on.
I had complete control of my mind and my thoughts.
I slept all night.

Before I was a Mom...
I never held down a screaming child so that doctors could do tests. Or give
shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.

Before I was a Mom...
I never held a sleeping baby just because I didn't want to put it down.
I never felt my heart break into a million pieces when I couldn't stop the
hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.

Before I was a Mom...
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important and
happy.

Before I was a Mom...
I had never gotten up in the middle of the night every 10 minutes to make
sure all was okay.
I had never known the warmth, the joy, the love, the heartache, the
wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much before I was a Mom.

sneak peak

There is a book out there called When Your Child has Cancer... Reflections from a Mother's Heart. Many times I have been asked "what is it like" having a child with an illness such as NB. Well, I know that I can never portray all the feelings and emotions that go along with it - I thought that these things listed below said it better than I ever could! A friend told me about this book, I have ordered it, but not yet received it. I am sure I will post more once I have the opportunity to read it for myself. I hope you all know that you can ask me any question, any time - I don't want you to feel that you just have to "guess" what we are thinking/feeling, if you want to know anything, just ask!

*I must start by saying that I (sadly) can relate to each and everyone of these points!*
When your child has cancer...

You cry a lot, and then you cry some more.

You have a hard time focusing on more than one thing at a time.

You carry hand sanitizer with you wherever you go.

You lose your short term memory and your ability to multitask.

Your children watch a lot of movies and videos and you don't feel guilty.

You have times when you fall apart for no apparent reason.

You are proud of your child for being so strong, brave and resilient.

You cry when your child loses their hair, and cry some more when it comes in a completely different color.

You forget what normal feels like, and then realize it needs a new definition.

You find that people elevate you to the revered position of "super-mom" but then you don't really have a choice, do you?

You allow yourself to indulge in magazines and DVD's that you enjoy, just so you can have a temporary break from reality.

You appreciate family gatherings and holidays more than you ever have in the past.

You don't have the emotional energy to return phone calls.

You need to know your child's ANC...ASAP.

You find yourself casually detailing what has happened in the last two weeks to a friend and then notice she is getting teary-eyed and trying to grab your hand.

You are surprised at the kindness of people that you hardly even know.

You would do anything to trade places with your child.

You feel an instant bond with any mother of a bald-headed child.

You appreciate every moment of life like never before

THIS is what life is all about

What an AMAZING few days we have had! Saturday we braved the "crowed" and went to the Duncan Rib Fest with my parents, Grandma & Grandpa Preister were also there! Charli was bored but handled it well!

Sunday Chad and I thought all day about what we could do to make the day special...finally at 3:00 we decided to load Charli up and take her to Humphrey to visit the baby kitties that she saw a few weeks ago. It was one of the funniest things I have ever seen! I can't post all of the pictures, because she was pretty "violent" with them, but I PROMISE that no baby kittens were hurt during her experience, in fact they loved her even more after she loved them so physically! I guess what my brother used to say is true, if you are mean to cats, they love you even more - a bit odd but tested and confirmed!

Today Charli and I went on a nice walk this morning and came back for a short nap. When she woke up we met her Aunt Vicki and three of her boys at the park for a picnic and swing ride! I will post pictures from that later, they are not uploaded yet!

It is such an amazing feeling to know that Charli is not going back for chemo anytime soon. Although, I will admit I do feel like I still have a "monkey on my back" not knowing what is to come in that department. I know that to most people, our fight is over - that is far from true. But, unless you have been in these shoes you don't really know how they feel - and I understand that...and I am sure it appears that way, but trust me when I say that it isn't. And, although we have received great news, it isn't over...it will never be over.

Enjoy the pictures :-)

everyone needs their daily water intake!

and some protein...?

i LIKE kitties!

just sitting and playing in the grass!

swinging in Humphrey

Grandma Preister decorated our house when I came home from the hospital a few weeks ago...such a fun and cute suprise!

MY food! (icky!)

spending the day with daddy on Father's Day

MY DAD IS THE MAN...is yours?

I LOVE BATH TIME!

Cautiously Optimistic

Yesterday was a day of emotions, decisions, choices, and worry.

Before going down to have our consultation with Charli’s primary oncologist we thought we had three options for moving forward with her treatment plan. We thought we would have the option of continuing treatment, stopping treatment, or surgery. Upon our arrival we were told that we only had two safe options. I will tell you a little about each option, maybe this will help you to know why we made the decision we did.

As a prelude, Charli’s tumor has shrunk at least 75% with the four rounds of treatment. The mass that is left is near Charli’s spine. The mass that is left may or may not be cancerous at this time. It is possible that what is left is an “empty” mass, and that would not be helped with chemo, nor would leaving it cause harm. However, if the tumor would grow treatment would be necessary.

SURGERY
This option was quickly dismissed when the risks were discussed – and basically not even considered as an option. In order to get to the mass that is left in Charli’s spine surgery would not only be tricky but also dangerous. Some of the side effects of surgery would be deformity caused by the breaking of the bones to get to the tumor, along with other more scary possibilities.

CHEMOTHERAPY
We could continue with four more rounds of treatment. Doing this does not guarantee that the mass left in Charli’s spine would shrink. The drugs used for Charli’s chemo have side effects that may not be seen for years, not to mention the risks that she is exposed to while in treatment. Some of the acute effects we would worry about would be low blood counts, infection, and illness. The long term effects can range from learning disabilities to heart damage. We could move forward with Chemo and in four months when we do the next CT scan it is possible that we would see no improvement, meaning it was not necessary. Or, we could see a decrease in the tumor – meaning it was the right choice to make.

MONITORING
We had the option of monitoring Charli’s mass on a regular basis to track what it is doing. By choosing this plan every 6 weeks Charli would undergo a CT scan to evaluate the tumor that has been left behind. Best case scenario is that the mass would stay the same or shrink on its own. Worst case scenario is that after 6 or 12 weeks we would see a growth of the tumor. At this time we would evaluate the results and possibly choose to do chemo at that time. This option banks on the fact that Charli’s body will be growing at a “rapid” pass while the tumor (hopefully) would stay the same size or be smaller.

When Charli was diagnosed three months ago her tumor was in a dangerous spot because of its placement, which made quick treatment necessary. Thank God, the treatment worked and Charli has regained her mobility.

Okay, before I tell you which option we choose I need to preface it with saying:
This is the choice we made, we feel confident in it for reasons that may or may not have been discussed on this blog. We ask that you do not question the decision we have made, it was not an easy one. There are several risks and benefits to all the options discussed with our Dr. and unless you were in the room with us, it is impossible for you to know which option would be right. We realize that no matter which choice we make we may always wonder if the other option would have been better. However, we are not going to allow ourselves or others to think this way – because this is the choice we have made, and we will move forward with it. We do thank you for supporting our choice and respecting the sensitivity of the issue at hand. Knowing that whatever decision we make may or may not have a lifelong effect on Charli is something that we were not prepared to do when all of this started…most of what has happened in our life the past four months we have not been prepared for. Most of all, thank you for your support.

Our decision has been to monitor Charli’s tumor and evaluate the status every six weeks. If in six weeks the tumor has increased in size we have the option of “changing our mind” and moving forward with the next four rounds of treatment. This method is not an absolute answer. If at anytime we feel we would like to change our mind and move forward with treatment with have that option. Also, if we have a feeling that something isn’t right we can move her CT scan up and get her checked at anytime. We feel that this is the safest plan for more than one reason. By choosing this option we are not pumping Charli’s little body with potentially dangerous drugs, if not needed. And, at this time we can not say we are 100% sure if chemo will work. Also, this option will allow us to change our mind and move forward with another treatment plan at a later time. If we choose to move forward with chemo, we can not take that back. Surgery would also be an option that we could never take back if it did not go well. Although it is possible that in six weeks we will need to move forward with more treatment, we will know that we are doing it out of necessity and not pure hope.

This was a painstaking choice, and one that no parents should need to make. However, Charli’s progress was not typical in some instances.

Our Dr. was comfortable with our decision, and agreed with the choice we made. I did ask her very directly what she would do if this were her daughter or granddaughter and she told me that she would have to sit and do the same thing we were doing…weigh our options. Charli’s situation is something that specialists are going to start large study on, the success rate of monitoring vs. continuing treatment. We hope that in several years from now there will be hard data that will help other parents make this decision, but until then – we just have to trust our gut, our doctors, and God.

I will post more later, I am a bit exhausted after writing this. I have so many pictures to post from Father’s Day and other events…I will try to do this later this weekend!

say your prayers

Tomorrow afternoon we are packing up and heading to Omaha again. At 2:30 we have an "appointment" with Dr. Thompson to discuss our options for treatment. We feel good about having options at this point, nervous about having to make a decision.

I think at this time I will wait to go into detail until after we talk with her doctor tomorrow, so I can give accurate details of each option. I am not sure what to expect for the day...will we have an answer or more questions - we don't know.

Please pray that we make the right choice for Charli's next step. At the end of the day we are her parents, and must feel comfortable with whatever treatment she will get.

let's play a game, called HURRY UP AND WAIT.

Oh boy! The good Lord has given two of the most impatient people a BIG challenge in life...waiting for something at every corner!

Charli had her CT today, and she did pretty well. Her last "meal" was at 2 am this morning, and she didn't get to eat until close to 2:00 this afternoons. She is a tough cookie! The test was on time today, we were thankful for that. We did run into a change of plans with Charli's sedation. The last time they sedated her she wouldn't fall asleep so they had to use something different this time, but it would keep her sleeping for about two hours...so we were not able to leave the hospital until 3:30, we were checked in by 8:00 this morning. Once she woke up, she was like a drunk little salior! Poor thing, she just couldn't get her balance! It was a long day, but not one of the longest - and I think it went pretty fast.

I am hoping to get a call by Thursday about our next plan of action. I am so nervous and afraid of what they will say, and I know Chad is too. All I want is for the next step to be the right step, the first time...and I want it to be over. We are so blessed to know that this treatment is working so far on Charli - so many families do not get that news, so I am thankful for that. Remember Penelope...her parents would have given anything and everything to just hear that SOMETHING was working, and here I am - sometimes I feel so selfish.

I will post something as soon as I get "the" call later this week. I have some other pictures and stories to post. This weekend was Chad's sisters (Jennifer) baby shower. All of Chad's family came to the house for pizza that evening, and we had a nice time...I will tell all about it later - once this is off my back!

Thanks for checking in! Please keep Keira and her family in your prayers and thoughts today as she goes in for her scans tomorrow (Wednesday) and will review the results on Friday with their dr. So many people are holding their breathe this week. Regardless of what we hear this week, we know that we can move forward...and I think that will make everything alright.

Never take the slightest thing for granted, to the person next to you, that thing may be their world.

just to be clear!

I guess I didn't word my post about Friday very well, since I have had many questions about it! Let me try to add to my previous story!

Originally the plan for our family was to go to Omaha Friday, Charli would have the MRI and then later that evening she would continue with three days of chemo - completing her 5th round of therapy. However, once we got there we spoke with a different doctor who did not feel comfortable doing that until the CT scan was done, to obtain more information about her tumor.

The CT machine was down, and we were not able to get an appointment until Tuesday...so we came home after her MRI. Charli did not receive chemo this weekend.

We aren't 100% sure what to expect. I assume we will have the test Tuesday and wait for the doctors to look over both tests and decide what is best for the next step. However, I imagine that there is a possibility of staying down Tuesday to continue treatment - but that is not what I am expecting.

Anyway...just thought I better clarify because I have had so many people ask if she handled treatment well this weekend!

Hope to have more info soon - I will post as soon as I can Tuesday.

I hope everyone had a great Father's Day!!!!!

the waiting game

I am so sorry for not posting sooner. I have been busy the past 24 hours.

We took Charli down for her 2:00 MRI. At 4:30 they finally took her in. This meant that she went without food from 7:45-6:30...nearly 12 hours without eating - that is better than most of us. She was a trooper, stayed calm all afternoon while we were waiting. Charli wanted to cuddle and be held before they took her in and just did great.

We spoke with one Dr. yesterday who ordered a CT scan for Charli to assess the overall success of treatment so far. This scan can't be done until Tuesday morning...so now we wait. I would think that we should know more later Tuesday, but I really don't know if we will be that lucky.

It appears that the MRI showed good things so far. The overall size of the tumor is much smaller, and her internal organs have fallen back into their "normal" God-given place. However, there does seem to be a mass involving her spine yet. Without the exact report from the radiologist I don't really know what that means.

At this point her chemo has been put off at least one week. There is the possibility that we will be back in next week to move forward with the next four treatments. This also means, that as things stand now, Charli will NOT be in the hospital for her 1 year birthday - PRAISE THE LORD!

So, we really have no answers - and not much to share with you...I wish I had some news. However, I am praying hard and putting my faith in God - that by waiting we will receive something more positive than if we would just go on what we know now. Either way I know that Charli will be treated the way God knows is best...sometimes it would just be easier if I knew what that was before it actually happened!

Thank you to all of you who sent notes asking about Charli! I received over 80 messages yesterday...so overwhelming and so touching. You are all such amazing people, thank you for caring about our family.

weekend plans

Hi everyone! Thank you for all your calls and messages today. We have the "GO AHEAD" for this weekend. I will have some answers tomorrow night...and will post something as soon as I can. Keep your fingers crossed and your prayers said loud!

Below is a post of a friend who's child was diagnosed with NB at the same time as Charli...she is only a few months older. I think it is written just perfectly, and says all that I have been trying to say over the past few weeks. Please take a few minutes to read and take it in. You can visit their site, the link is listed to the right under "Keira".


It has been a while. As I typed in the date, I realized the previous post was almost two weeks ago. I apologize. This last week was crazy.

It feels a little like we are starting over. Her last round of chemo happened 2 weeks ago. Her first scan is not until next week. Three whole weeks of doing nothing but waiting!

During the 4 rounds of chemo, we felt like we were doing something to help Keira. Now we feel like we are just waiting . . . waiting for these tests, waiting for results, waiting and not doing anything. And while we trust God, we are also scared. The tests will show 1 of 3 things: she has gotten better; nothing has changed; or she has gotten worse. The last option is very unlikely, and the doctors believe she will show improvement. But we are her parents and we are still scared. I think during the rounds of chemo we did not have to think much about what was really happening. Everything became routine and simpler. Now we have to break out of all that and finally discover if our little girl is really getting better. That is scary.

Her first test will be next Wed at 2:30 pm. Please pray for her. She is unable to eat anything for 6 hours before the test, which in the past has been more like 8 hours because the test always gets started late. It is not easy to "explain" to a 1 year-old why she can't eat. Her response is typically just a loud scream and then another loud scream and this continues until she is fed. So please pray for her and for her parents. And of course, please continue to pray for her as we finally learn the results of the past 2 months of chemo.

We will then meet with her doctors on Friday to discuss the results of the test. The ideal result is a miracle where all the cancer is gone and we fall to our knees praising God. The results doctors are expecting is that the tumor would have shrunken allowing either surgery followed by more chemo or another 4 rounds of chemo.

Also, her counts are low right now. She got her finger pricked to draw blood yesterday and we had a hard time getting the bleeding to stop because her blood is so thin right now. She is in danger of infection and showing signs of being extra tired. She needs your prayers. (I am so tired of all this.)

We are believers in Jesus Christ. Our faith teaches us that this universe, all the bad and the good, are still under the control of God. We believe that God loves us and loves our daughter. And we trust God. We pray that He heals Keira. But we are also parents of a sick little girl. Our home is tense right now despite our trust. We are anxious even as we believe. We are nervous even as we are hopeful. And in this silence, in the waiting, in the day to day moments where we have no answers, all we can do is lean on friends and family and most importantly on our Father in heaven. And from Him and from all those who stand with us we draw strength to see this through.

Jason, Erin and Keira Grace

The Special Mother

*someone forwarded me this email today, it really meant a lot to me and I wanted to share*

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for
propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who
does not know laughter? That would be cruel."

"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll
handle it."

"I watched her today. She has that feeling of self and independence that
is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter,
I can fix that. This one is perfect - she has just enough selfishness." The
angel gasps - "selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a “spoken word”. She will never consider a
”step" ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty,
prejudice....and allow her to rise above them. She will never be alone.
I will be at her side every minute of every day of her life, because she
is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Happy Father's Day! (early)

I have created the following video for Chad for Father's Day! I know it is early, but with everything we have going on this weekend I didn't want to forget about it! Chad really enjoyed the video, we hope you do too.

I will talk to Charli's doctor tomorrow and know more about this weekend, if they still feel comfortable moving forward. I pray that everything will go as planned, but we will do what is safe for Charli....I will keep you posted!

Thanks for checking in on us :-)


Happy Father's Day

PS - if you let it play through the first time, the second time you should be able to view it without any problems (if you have a slow connection!)

jibber-jabber

While on a walk with Charli this morning, as she 'woof-woofed' at a dog that walked by, I realized that I haven't posted about all the cute words she can say!

Charli started to say "da-da" early last month but just recently has added a few new 'regulars' to her vocabulary! "ma-ma" is pretty common for her now (she used to say na-na when she wanted me!), and she throws a "da-da" in there every now and again! She also will say "ppa-pa" when she sees a puppy, and make a "oof, oof" sound too...trying to bark! One of the cutest sounds she makes is when she gets on her John Deere tractor and says "voommm-voommm"!

She really is growing up so fast, it is hard to believe that 10 1/2 short months ago she just came into this world...look how far she has come.

GUILTY

Well...I feel guilty this morning.

I think Charli is starting to get sick - and I feel terrible. The past few weeks Charli has been feeling and acting so well, we have been a bit more "brave" with her than we have been in the past. Up until about a month ago we were okay with keeping her home, limiting visitors, and limiting where we would go so we wouldn't bring anything home. BUT - a few weeks ago we went out for the first time (taking Charli on a 'trip') and it got us excited! So, we have started to take her a few more places to visit, letting a few more people come into the house, etc...and now she is sick. UGH.

I know that sickness comes with children - that I get. However, most children aren't going through chemo and have a weakened immune system. I am not sure how long she will hold onto her stuffy nose, cough, and sneezes, that she woke with at 4am...but either way I feel bad.

We have to take her to Omaha this weekend for her MRI. I am afraid that if she gets treatment while sick, she will be knocked off her feet. I know it may seem silly, but please pray that she feels better before our next trip to Omaha, which is Friday...

night out!

Well...we had our first "date night" since Charli got sick...and we had a nice time! We went to eat at Traditions (a great place to go!) and then to a movie. At Traditions I had my very first Martini...how exiting! I had a 'Lemon Drop'! After dinner we went straight to the movie. We saw 'Knocked Up'. It sounds silly, and it was! We enjoyed the movie we laughed a lot...at the end they had a little baby (about Charli's age) and that made us miss Charli - but other than that we enjoyed it! We came home, and of course, Charli was sleeping - so we didn't get to play with her!

Today we took Charli to an antique tractor show at the park, it was warm but nice to get out. I think later today we will go on a walk to the park and do some fun things!

Less than one week until the MRI, I am so excited and so nervous at the same time! All for now - Charli is napping and I am making cookies! Have a great day everyone :-)

I like to play under everything now!

me and mommy before she went on a date with daddy!

mom was trying to tease me because I wouldn't stop chewing my thumb long enough for a picture! jokes on her, I still look cute - she just looks silly!

I went to visit Lynn & Lonnie this day! Lonnie was golfing so I didn't get to see him :-(

I like to sit and play in my "brothers" couch...mom & dad think this is funny!

WOW!

Do any of you look back on things you have said or done and think "how did I know that THEN!? I am sure that we all do and say things that can be looked back upon like this, but we don't realize it. Today, I was hit with something that brought me to tears.

I was putting Charli's new bracelet in her "jewelery box" and found a silver bracelet I bought for myself the week that Charli was born. (I remember buying it the night I got a pedicure, one week before I had Charli!!) Anyway, it said..."Expect Miracles". I found this, read it, and had to sit down. How did I know a year ago that this phrase would mean so much to me now?

It is something like this that reminds me that God works in mysterious ways. After Charli was born I put the bracelet away, and was going to save it for her - never to look at it again until she was older...or so I thought! Here I sit today - proudly wearing this bracelet again to remind myself to no only believe but EXPECT miracles!

This is something I wanted to share with all of you...so you can EXPECT MIRACLES too.

i forgot!!

I forgot to post these pictures...and I apologize for that. Shortly after Charli's benefit we received the most precious handmade blanket from a group of moms I met while I was pregnant with Charli. We call ourselves the July06 moms!! All of these people have children the same age as Charli. Although not every mom was able to contribute to this quilt, the ones that did - made this on behalf of all of them! I want to take a quick second to give a HUGE 'shout out' to them. These are the moms who have given me so much support, love, and understanding both before and after Charli's diagnosis. While we were struggling with what to do with Charli, before we KNEW it was cancer...they pushed me to follow our gut and continue on until we found answers. Without these ladies...I would be LOST! I have found several wonderfully close friends, that continue to amaze me daily! I pray that everyone can meet someone as great as these women, I have been blessed

kindness of others

I just wanted to thank all of you for your kindness. I am talking about the kindness of emails, letters, cards, phone calls, notes left on our door, visits, surprise ice cream drop offs, etc!

We received two gifts this week that especially touched my heart. Chad's aunt Janice stopped by Thursday night and gave us two very thoughtful gifts. The first is an inspirational childnren's bracelet for Charli. It is so pretty - silver and pink, with special charms. This will be her "special" bracelet, and I intend to have her wear it when we go down for chemo. The second gift is equally as special! It is an "awareness" bracelet. The card that came with it says: "Having a child with Neuroblastoma makes us keenly aware of how fragile and precious their lives are. Many families look for a special peice of keepsake jewlery that will honor them." It is beautiful

The second gift came from 'Charli'! We received a card that said:
TO: Mommy & Daddy
(picture of Charli on the inside cover!)

Hey, Mommy & Daddy,
Grandpa & Grandma Preister want a play date with me, this Saturday, June 9th.
Grandpa gave me this money to give to you so you can have dinner & see a movie.
I really want to play with Grandpa & Grandma so I hope you will take them up on the offer & take sometime to go out.
This is my belated Mother's Day and early Father's Day gift to you.
Love, Charli Ann

Oh...and Charli got an amazingly cute pink John Deere dress, shorts, and hat from a friend in Omaha - pictures of that were in her video!

These are just a few examples of how kind and great people have been to us. THEN - there are people like Linda who bring us ice cream afer supper!!

Thank you to all of you who know how to sweeten our day and brighten our lives!

same video...

Hi everyone! This is the same video - just without having to go somewhere else to find it! I have been told that some of you have had problems opening the other one, and thought this might help!

Enjoy :-)

Photo and video editing at www.OneTrueMedia.com

growing up so fast!

growing fast!


click on Charli's picture to view a video slideshow of her! We hope you enjoy it...keep sending in what you're thankful for!

say something!

I know there are lots of you out there who read this and NEVER say anything back (yes you!) and I want to hear from you! You can post anonymously so no one will ever know who said (myself included!).

So - I would like each of you to post something "small" that you are thankful for. It doesn't have to be anything major, but it can be! Anything you are thankful for, in my opinion, is major...but it can be on any scale.

I just want to show everyone on here how many things we have to be thankful for! Please just take a second to do this...I think it will make all of us feel good!!!

I will start...

Today I am thankful for the playful and innocent way Charli crawls away from me when she should be napping, and I walk into her room saying "I'm gonna get you!". I LOVE THAT LITTLE GIRL!!! She is my world!

okay, YOUR turn!

not want I wanted - :-(

ugh, just got the call from the clinic. I didn't hear what I was hoping to hear, but at the end of the day, it doesn't really matter!

Charli's scan is set for NEXT Friday - which means we have to wait nearly two weeks before we will know anything...ugh. All in all, it doesn't' make a huge difference - we will get the same results either way, but I want to know NOW what is going on inside my baby's body.

We have the MRI scan scheduled for Friday and later that evening they will start chemo. This also means that the weekend will be long - because we won't get out until later in the day Sunday - in the past we have been blessed to be out early in the day (because treatment has started early Friday). :-(

So - I am a bit disappointed and sad right now, but it won't effect the results we get - and THAT is what matters.

Thanks to all of you who have called and sent notes today to check in on us...all of your love and support is appreciated - always.

PLEASE SIGN

PLEASE VISIT THIS SITE, SIGN THIS PETITON, FORWARD THIS INFORMATION, and GET THE WORD OUT THERE!!

WE NEED TO MAKE A DIFFERENCE NOW.....

Dear Friends and Families,
Children with cancer continue to be treated primarily with drugs that were developed 20-30 years ago. Scientifically, researchers have reached an era where new types of 'smart drug's can be developed to treat cancer at a genetic level. These new types of cancer treatments have started to be developed for adult cancers and have showed great promise for cure. Children with cancer need these types of new drugs to give them Hope for a complete cure.

Current debates in both the House and Senate could eliminate such future development of targeted drugs for children with cancer and other rare diseases. In order to protect biotech development of such essential biologic products, Candlelighters is encouraging families, friends, and co-workers to sign the following petition located at: www.candlelighters.org/petition.stm

A Petition to Congress to Preserve Innovation and Support H.R. 1956, the "Patient Protection and Innovative Biologic Medicines Act of 2007
* Because the survival rate of childhood cancer has not changed in the last decade.
* Because treatment for children with cancer has not changed significantly in recent years and we are eagerly awaiting a major breakthrough.
* Because current toxic therapies are not a solution for children with cancer as they cause lifelong health problems including second cancers.
* Because biologic products are among the most promising and effective medicines for the treatment of serious and life-threatening diseases, like childhood cancer.
* Because it is vital that we spur innovation for pharmaceutical companies to invest in the development of these life-saving drugs.

As supporters of the development of new targeted therapies for children and adolescents with cancer, we petition Congress to support H.R. 1956, the "Patient Protection and Innovative Biologic Medicines Act of 2007;" legislation that creates a pathway for "follow-on" biologics but establishes an appropriate balance between reducing cost, ensuring safety and providing incentives for innovation.

Please forward to other friends, families, and colleagues and ask them to sign the petition as well!

Thank you!
Candlelighters Childhood Cancer Foundation

Making memories

Happy Monday everyone! We don’t have a lot to report yet this morning, but I hope to have some information later today about when Charli’s MRI will be, and how her counts are doing. They seem to be a bit lower than they were going into the weekend. What I don’t know is if they are still dropping, or on their way back up. Oh, the waiting can be hard.

We had a pretty nice weekend. Friday evening some friends stopped over – Jesse and Nicole with their (nearly) two year old son, he was so fun to watch play, and so good at putting the toys back. Saturday we didn’t do too much, but we did go for a nice afternoon drive and stopped at Cracker’s to Caviar for a great coffee and smoothie (and cookie)! I recommend everyone going there for their morning/noon/afternoon drink :-)

Sunday I got to sleep in while Charli and Daddy started their morning. We went to Lindsay Sunday afternoon to see Aunt Amanda and Uncle Brad…Charli hadn’t been there for a very long time, I am sure Sassy (their cat) missed her! Actually, their cat “attacked” Charli’s head! Chad and I laughed, but Amanda had a mini-heart attack when it happened. After that, the cat was pretty unimpressed with Charli though! Brad made a great “late lunch / early dinner” and Charli even took a nap there! Then they took us out to see some baby pheasants and a fainting goat! Charli liked both of them!

When we got home grandma and grandpa Borg stopped by on their way home from the zoo! They went with my sister and her family to the Omaha Zoo, and I think they had a great time. I haven’t talked to my 4 year old niece Ryen, but I am pretty sure Grandpa had more fun than anyone else!!!

I will post an update when I hear from the doctors later today – hopefully we will have a date for her scans by then!

Uncle Brad's baby bird!

ahh, this goat likes me!

our new family, daddy said we could get a goat too!

daddy says I am his favorite toy!

all dressed up to go to Aunt Amanda's and Uncle Brad's house!

move over Wynston I am hungry too!!

Aunt Amanda tried to give me ice cream, but I didn't like it :-(

another shot with me and my new friend

grandpa, will you read me my new book?!

grandma & grandpa Borg on one of their weekly visits!!

my new monkey from grandpa & grandma preister!

i like to PLAY with my sippy cup, and lay on my pillow!

CHEESY!!!!!
(I have a hair sticking up too, I look like Alfalfa!)