pictures!

I know I have been bad at getting pictures on the site, so here is a collection of photos!!! Let me warn you that there are a lot of pictures!!!!

someone very special left me "welcome home" balloons, and a sign. I decided to make a wish and let them go a few days later. This is mom taking me outside to do it!

dad kept sneaking into my crib to find a comfortable place to lay, we snuggled up together!

grandma & grandpa borg came for a few visits while I was in Omaha!! I was happy on this day!

everyone take a close look, before daddy deletes this pictures, I am in a RED wagon!!

I guess grandpa & grandma preister didn't like the picture above too much, because this is what they brought me the night I cam home from the hospital. Can someone PLEASE tell daddy that is IS NOT his toy!

on my 8 month birthday!!!

mommy and me in the hospital, looke at my CUTE pants!

mom bought me this dress because it had a funny hat to match, just incase I am bald in a few weeks!

just having fun with another John Deere toy!

only the BEST daycare people ever! This is Lynn & Lonnie, they came to visit me when I was in the hospital - can't you just see how much they love me? I love them too, and miss them lots!

getting a bath before my first surgery, I liked the water!

yummy, my IV was good! They had to wrap it up so I wouldn't yank it out! whoops!

grandma deb and uncle dillon came over for a visit one night!

i look sick, don't I?!!!! You would never guess it :-)

after my bath, it was cold in my room!!!

I liked to play with my new toy that I got while I was in the hosptial! (one of many!!)

*Sorry to grandma and grandpa preister, I don't seem to have a current picture with you two. I guess you will have to come over for a visit so mom can snap a shot or two!! God knows mom needs to add MORE pictures here, right?!!

music as a way of life...

Those of you who personally know me, know what music is who I am! I thought that from time to time I might try to post songs that 'fit' me...this is most definitely one of them right now!

Artist: Rob Thomas

Song: Little Wonders

let it go,

let it roll right off your shoulder

don't you know the hardest part is over

let it in,

let your clarity define you

in the end we will only just remember how it feels

our lives are made

in these small hours these little wonders,

these twists & turns of fate

time falls away,

but these small hours,

these small hours still remain

let it slide,

let your troubles fall behind you

let it shine

until you feel it all around you

and i don't mind if it's me you need to turn to

we’ll get by,

it's the heart that really matters in the end

our lives are made
in these small hours these little wonders,
these twists & turns of fate
time falls away,
but these small hours,
these small hours still remain

all of my regret

will wash away some how

but i can not forget

the way i feel right now

in these small hours

these little wonders these

twists & turns of fate

these twists & turns of fate

time falls away

but these small hours

these small hours,

still remain,

still remain

these little wonders

these twists & turns of fate

time falls away

but these small hours

these little wonders still remain

update...

I am not sure what to say today! I have so many emotions running, it is hard to tell what should be shared with others - and what I should keep to myself because they will pass in a few hours!!!

There are still a few hours out of every day that I find myself sitting, thinking "why is this happening". But I later find myself thinking that is so selfish when I know it could be so much worse. I know that pain and heartache are all relative to what you have had to go through...and yet everyone has had their heart broken at some point. What breaks my heart might not put a dent in someone else’s...

Each night we give Charli an injection of something to help her through her chemo. It seems a bit unreal when I look back on it...poking my 8 month old daughter. Not something I thought I would ever have to do!

Charli has had two really good days this week - how lucky are we! We have seen her personality change so much over the past few days...we can tell she is starting to feel better already. Her smiles can bring tears to a stranger’s eye and her laugh can brighten anyone’s day - and she is my baby! How lucky am I to get to see that every day?!!

I know I have said this to several of you already - but I am going to say it again. Being a mom of a baby who has cancer is probably one of the most challenging things I have had to do in my life...and I hope it is the biggest challenge I ever face. I feel like I have been given a life long membership to a club that I never wanted to join...but now that I am here I feel the need to educate as many people about it as I can. Before Charli was diagnosed I didn't have a clue how many families were affected by childhood cancer...to be honest I didn't know anything about it.

Okay…enough of the pity-party! My beautiful baby girl is sleeping in her crib as I type! She has been doing great since the chemo started (everyone knock on wood!) and we can only continue to pray for the best! I will close with my newest and most favorite quote…

"Deep inside us, we have a spirit of energy and determination, a spirit that refuses to be broken - and we call this hope. Even when life’s challenges overwhelm us our hope inspires us to rise to new heights."

home sweet home....

Well, today is Tuesday and we hoped to be home by now…but we aren’t! Charli didn’t have a great day yesterday and things got pushed back. She was scheduled for a CT scan, but because she hasn’t been a good eater – she wouldn’t drink the bottle with the contrast in it. This meant she had to have a tube put down her nose into her tummy. We are still waiting on those results. However, we did get the all clear on her bone marrow testing…the cancer has not spread into that.

Charli had three days of chemo treatments this trip, that was something we were not aware of. But she has done great so far. She hasn’t eaten that well since her first treatment, but she wasn’t eating that great before either. So, it is hard to tell if it is from the chemo or not.

We were told yesterday by her cancer treatment team that they do not want her to go back to her regular daycare. This saddens me for several reasons. We LOVE our daycare. Lynn and Lonnie are, we believe, the best providers in town…and to loose them breaks my heart. But, we must do what is best for Charli. I will be staying home for the most part, but will go into work as I am able…I am thinking about two days a week or so. We will see what we can work out. I am also sad that Charli won’t be able to be around kids very much over the next six months or so…she just lights up when a child is around. As the doctor said “if you can guarantee that the child is not sick or carrying a virus, go ahead and let them play”….that pretty much sealed the deal. It isn’t worth Charli getting very sick – it is only a short period of time, right? They said that she will probably end up getting sick from her own body, that is how sensitive she will be.

We are hoping that within 6 months the chemo will be done, and possibly the surgeries that will go with this will be done too! I am sad that she will miss out on so much of her first summer…but know she will have a lifetime of summers to make up for it!!!!

Not a lot of new details to report…once I get home I will post some new pictures of her for you all to see!

Thank you for all the nice notes…we have the best friends in the world!

What a difference 24 hours can make....

I think at this point, all of you are aware of what has been going on with Charli…but I do know that not everyone has much detail. So I will begin to use this site as a place to update friends and family on her treatment as well.

Charli has recently been diagnosed with stage 3 neurolbastoma. We believe the original tumor began on or near her abdomen (as most do) and grew ‘backwards’ into her and around her spine. This causes a challenge, because it makes surgery difficult at best. This will only be used as our last resort.

Today (Saturday) she has successfully completed her first ‘cycle’ of chemo. It looks like we should be coming home Monday sometime. She will come back for a new cycle every three weeks, and be in the hospital for 2-3 days at a time. After one phase (4 cycles) Charli will have an MRI to determine if treatment has been successful, or if changes will need to be made. We are hoping that after 2 phases, the tumor located on and near her abdomen will be small enough to remove at that time. The mass surrounding the spine will be more sensitive, and I am not sure where that will take us.

I am sure that many of you have researched or at least ‘Google’d” it. Neuroblastoma is not exactly common, although percentage wise it is…considering the childhood cancers. It believe it makes up around 7% of all childhood cancers, but only 650 cases a year. What makes Charli’s unique is the location of the tumor in regards to her spine. What makes Charli lucky is how quickly it was caught, and how young she is. For some reason when children with these types of tumors hit one year old, things take a turn for the worse. We are very fortunate for catching it with months to spare before that date. In fact, I have not given up hope that she may be considered cancer free by her first birthday!!

Children are very resilient and take chemo, as well as other medications, much better than adults. I feel that so much of this is based on attitude – they are not pessimistic about medicine and do not know how to be negative!!! Children do face the same challenges with chemo as adults – but not each child experiences them. Charli may be sick and loose her hair…and she might not. We will just take each day as it comes, and take whatever the Lord gives us.

Charli is very strong in God’s eyes, to be given such a big task at such a young age. I can only imagine what God has in store for her in her years to come!!! We have so much to be thankful for in this situation. We are blessed with a great support system, not only in each other but also with our friends and family (and the outpour of support from strangers too!). We will not have to explain to our crying daughter why her friends can’t come over, or why they can not come visit her because they are sick. We will not have to see her cry because she is too tired and weak to ride her bike down the sidewalk. And, we will not have to explain to her why her hair is thinning and falling out. Nor will we have to try to help her understand why some people just do not understand what it is like to be sick. God bless the parents who have had to do these things, I am not sure I would be strong enough.

Although it is only the beginning, the road has been long – but manageable. I hope this information has been easy to understand… I am a bit fragmented lately!

It is extremely important to both Chad and I that you all understand how thankful we are for the prayers that have been said for our little girl. I wholeheartedly believe in the power of prayer, and I know that there has not been a lack of it in this case. And, we have had good things happen to show it. Also, the other acts of kindness have been overwhelming. The cards, gifts, phone calls, and visits have touched our hearts in a way that we can never repay. We can only hope that we will pass the kindness along to the next person, and the world will continue to be a kind and caring place to raise our children.

If you know of anyone who is interested in keeping up with Charli’s progress please feel free to give them this website to visit. I cannot gaurentee how often I will update it, but I will try to do as best as I can! Most of you know how to reach me, but if not leave a comment and I will get in touch with you!!!

I will get going now…this got a bit longer than I anticipated – and I am going to go watch my beautiful little baby girl sleep!

GOD BLESS YOU!

boy oh boy!

well..I guess some of you might need some updating on what has been going on in our lives the past few weeks. Charli has not been feeling well, but we aren't sure what is wrong. We have been into the doctors office three times, one ER visit, and three days in the hospital - and we are still fighting the same issues. She seems to be having some kind of stomach pain, but nothing have been found as of yet. We are taking her to children's in Omaha wednesday and hope to find some answers and help there. Anyway...in the meantime we have old pictures to post and some new ones too! She can still take a cute picture, sick or not!! I will do my best to update everyone when we find something out tomorrow! In the meantime...enjoy!

Ready to go hunting with daddy!!

Bathtime is fun!!!!

I REALLY am sick, don't I look cute in my hospital gown?

"GO VIRGINIA TECH!!!"

I love the hookies, even Aunt Kara, Uncle Randy, and my soon to be new cousin 'Henery'!!!!

I got these from a friend at daycare for Valentine's Day...daddy even tried them on! BUT - I ate the tips off shortly after mom took my picture!

Playing infront of the mirror is fun...I even like to share the mirror with my brothers and this cute little bear!

Before I got sick, this is just one of the cute fun things I was working on!

I got this shirt for Valentine's Day from Great Grandma & Grandpa Frauendorfer...I'm so cute! (I also go this from my cousins Ryen and Macey...but that one was too small for me!...good thing I had a back up!)

be a voice....

A newborn's conversation with God.

A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?" God said, "Your angel will be waiting for you and will take care of you."

The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy." God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."

Again the child asked, "And how am I going to be able to understand when people talk to Me if I don't know the language?" God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you to understand."

"And what am I going to do when I want to talk to you?" God said, "Your angel will place your hands together and will teach you how to pray."

"Who will protect me?" God said, "Your angel will defend you even if it means risking its life." At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked,

"God, if I am To leave now, please tell me my angel's name." God said, "You will simply call her, "Mom."