all that is important...

We have had a great week. Sadly, I guess when good weeks come - we don't have a lot to report! Charli is walking around so much that she has blisters on the bottoms of her two big toes! We are working on healing them, but we aren't having a lot of luck!

Charli had her first non-cancerous boo-boo!! (something to be excited about, huh?!). She was walking too fast and lost her balance, biffing her chin on the lego table! She is bruised and red, but no cuts - and she doesn't seem to be bothered by it. She is such a tough BIG (little ) girl!

She really has grown up a lot in the past week. Her personality is so strong, in a good way! She is such a good communicator also - when she is hungry and tired, etc. She is also turning into quite the talking. I am not sure where she gets the talking gene, we are looking into that one!
She really is turning into such a big girl, and we couldn't be happier! She makes even the bad days great, and the sad times happy and exciting! Life with her couldn't be any better!!!

PS. Amanda found my first gray hair this weekend. Who do you suppose gave it to me, Charli or Chad?!!!!!!

playing in the grass!

mom playing with her camera again...pink grass?!!!

blue grass, what in the world?!!!

picking out only the prettiest rocks!

like father - like daughter!

daddy promised me a hot pink "preister excavating" truck. LOOKS GOOD!!

"all girl"????!!!

mommy's little musician!

mommy and me!

Count your blessings.

The unthinkable has happened. One of Chad's cousins, Todd, lost his life this weekend, the younger brother of one of our good friends, Joey. Such a young life, around 18 years old. Please say a prayer for Todd's family that is left behind to grieve their loss and celebrate his life. No one should have to deal with something like this, it makes the world seem a bit "unfair" sometimes. I ask that you take a few minutes to pray for them, as they have a long road ahead of them.

When something like this happens I think we take extra time to realize how precious life is, how careless we can be with our own choices and how much we take for granted in ourselves and in others. It is terribly sad that it takes something like this to make us all slow down a bit. What is even more sad, is that our gratitude doesn't seem to last long.

There really is no graceful way to make the switch from talking about something so tragic to talking about something so precious.

Charli has been so cute the past few days - not necessarily cuter than normal...but I have been staying home this week (daycare is on vacation!!) so I have been able to see more of her again...which I LOVE! Enjoy the pictures...I enjoyed taking them!

i'm always chasing a dog!!

who is the funniest girl of them all?!

mom says I look "SO CUTE" in this dress her friend sent me!

daddy calls me a "bottle calf", but I don't get it??!

the cutest employee they'll ever get...ME!!!!!!!!! (but mommy says NO, I can't go to work with daddy!!!!)

me BEFORE spaghetti!

after spaghetti!!!

i LOVE shoes!!!

vrrroom - vrroom, chasing Kasper!

WOW, look at the rain mom!!!

I HAVE CANCER

Someone posted this to a previous post. I am not sure who posted it, whoever it was - please take credit!! I read it and loved it, and wanted to make sure that others got to see it too. It is so true, not only for cancer...but for any bump in the road. It is true that I have grown stronger because of NB, more compassionate, more tolerant. I have given second chances where I may have not before, I have forgiven, and I have forgotten. I have given more love and offered more trust. Cancer has brought a lot into my life.


I HAVE CANCER...

I have cancer but cancer does not have me.
Cancer is not who I am.
It’s only a bend in the road that is my life’s journey…
An unexpected detour on my path.
It is a lesson in the schoolroom that is human existence.
So I will pause to rest and heal
And study the lesson
Before I move on to my life beyond cancer.
I will not give in to fear,
And I will not be discouraged by setbacks.
Setbacks are only opportunities to review the lesson.
I will not be ashamed of my scars.
My scars are brushstrokes in the masterpiece that is my life.
I will be thankful for the many blessings that cancer has brought into my life:
People I never would have known,
Love that I had never been still or quiet enough to witness,
Humility I needed,
Strength I thought I had lost,
Courage I never knew I had.
I will remember that I can still have fun
And that it’s okay – even healthy to be silly.
I will remember that to find the joy in rainbows I must endure the rain.
And I will remember always that
While I may have cancer
Cancer does not have me.

author unknown

just for fun!!

"Courage is not the absence of fear, but rather the judgment that something else is more important than fear" - Amrose Redmoon

I like to eat the head of my little people!

I am such a GREAT musician!!

how did this get on my head?!!!

kisses from mommy!

dog watching!

grandma Deb and Uncle Dillon

let's make something mom!!

"Faith is not believing God can...it is knowing that He will"

good days!

Sorry I haven't posted anything for a few days, and pictures for a long time! But, I will post pictures today!

I can't believe I forgot to mention that Charli is walking! I have meant to do that many times, but time has gotten away from me. She is keeping herself busy, and changing so much day to day!

While we were eating lunch today (which she is eating very well, by the way!) we talked about all the things we are thankful for as a result of getting a good report at our last two appointments, and I want to share them with you! At the time, we just did what we had to do. Now looking back at everything we had to do to not only prepare for the trip, but also 'survive' the trip...it's exhausting!

WE ARE THANKFUL FOR:
-no more chemo
-no more regular port access
-no more daily shot to raise her counts (given by Chad and I)
-no more bactrium twice a day, three days a week (which Charli grew allergic to)
-no more trips to get her finger poked twice a week
-no more waiting for hours in the clinic, waiting to be admitted...up to five hours or MORE
-no more diaper changes every two hours, waking Charli every time she feel asleep
-no more fighting with Charli to eat while in the hospital
-no more pawning our dogs off at Twin River Vet to be kenneled while we are gone
-no more stray hairs falling out of Charli's head
-no more trips to Omaha with that "pit" in our stomach
-no more packing bags of toys, trying to keep Charli occupied
-no more keeping Charli at home, while everyone else gets to "go out and play"!
-no more "Friday outside only" visits to daycare
-no more staying home all day for Charli

I could go on for hours, talking about all the things we are thankful for, but I think you get it! Her cancer has given us many things to be thankful for too, we are a much closer family than we were before she got sick. We are also much more aware of germs and keeping everything clean for Charli as well as ourselves! I feel we are more understanding, and supportive than we may have been before. And, I pray we are more accepting...all of us.

I would like to mention, and give BIG thanks to my sister Rachelle. She and her family are taking part in the Lunch for Life campaign (link to the right). They are donating money each month, and the money goes to fund neroblastoma research. By doing this, the organization has created a tree for Charli, each time money is donated in her honor she gets an "ornament" to mark the donation. I think it is a great way to raise money for the cause, and an easy and affordable way to do this. So, thank you Rachelle, Shaun, Ryen, and Macey for donating in Charli's honor, it is one of the best gifts we have been given. I encourage anyone who would like to financial help the fight for childhood cancer, to give directly to a group like this. If you ever have any questions on the organization, please ask and I will do whatever I can to find out more about them. There are many great groups out there giving 100% of their funds to research.

I got this bubble machine for my birthday! Thank you Mia!!

I really like this corner of my bed!

fun...a NEW toy!!!??!!!

brrr, but it feels nice!

more daddy!

woosh...all clean now!!

I'm not ready to put it away :-(

our last visit to the hospital...just waiting

pretty shoes!

umm, Dad...does mom know you have me up here?!

wait...I am NOT supposed to eat the spoon too?!!

I like my new chair, mommy and daddy gave it to me for my birthday!

again...

I know I have posted this before, and it doesn't seem like it was that long ago - but I ran across it again and I wanted to post it again! This is in honor of all the new moms I know out there...Kara, Gina, Jennifer, Heidi and the moms yet to be! When I posted this the first time, it touched me...but as more time passes - I get it a bit more each day.



A newborns 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."

from Charli

Charli wanted to say:

Happy Birthday Daddy!!!! I love you!

what's it all about?

I ran across these facts today, and I wanted to make sure that we don't forget what this is all about...


Childhood cancer is the number one disease killer in children.

Neuroblastoma is the most common cancer in infancy.

Neuroblastoma is the most common extra cranial solid tumor cancer in children.

Every 16 hours a child with neuroblastoma dies.

There is no known cure for neuroblastoma.

Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.

Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy,asthma and AIDS combined.

There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%

I've been tagged

I was informed that I was tagged a couple days ago.... so here goes! =)

The rules:


1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.


I was tagged by my friend Michelle, who I met when Charli was diagnosed with NB. Her daughter, Isabella (link to her page located to the right) is a SURVIVOR!!!!

So lets see if I can think of 8 things that are interesting about myself.... =) This may be hard for me! hehehe


1. I used to show dairy cows in 4-H when I was younger!

2. I, like Michelle, thought about going into the nursing profession. First, when Chad had his accident in 1999 and then again after Charli was diagnosed. The dedication that these people give to our children, is amazing - and what a difference they have made in our life.

3. More than anything, I just want to help people. It really doesn't matter how or what I do to help, I just want to help.

4.I think my lucky number is 317. I was born at 3:17 and Chad and I started dating on 03-17!

5. I really wanted to teach Charli sign language, but with everything going on with her NB - it got tossed to the wayside.

5. I started to collect willowtree angels several years ago...they mean more to me now than ever! Now I collect any type of angel!!

7. I dated my husband for more than six years before we got married.

8. I was part of a music group in college that toured the United States in the summer, and the state of Nebraska in the spring. Being a part of this group took me to the Bahamas, Mexico, Disneyland, Disneyworld, Knotts Berry Farm, Universal Studios, and many-many other very neat places!!!

Instead of tagging 8 other people, I want those of you who are reading this to list a few facts about you! It will help me get to know the people who come to check in on Charli!

"Praise God from whom all blessings flow..."

"Praise God from whom all blessings flow..."



I am sorry for not posting earlier - it has been a long day.


We have received positive news from Omaha today. Charli's tumor has not grown, in fact it has recessed some. We do not know the exact percentage or size of the tumor, but we were told that it is in deed a smaller mass than six weeks ago. THANK GOD.


This means a few things for us. #1 - it means that there was no growth, which would have been a huge indicator that the mass was still active. #2 - the mass could have stayed the same, which would have left us in the same boat as six weeks ago...not knowing what to do next. #3 - I am going to try to believe that if it is decreasing in size that it will continue to do so, and be less and less active as time goes on.


Please know that we are SO excited and feel so blessed, it is hard to put into words. At the same time, we are still guarded because we will go back again in six weeks and again in three months. And, truly any appointment could turn our life around. I know that we can not dwell on that - and we won't...but it will always remain in our minds.


Thank you for all of your prayers. You must know that we believe in the power of prayer, and know that your love and support has helped our family in ways we will never know.


Our journey is not over, although it may seem to be. Charli will have at least one more surgery to have her port removed, possibly after her three month check. Today as we were getting ready to send Charli off for her CT, I realized that it doesn't get easier with time. I thought that after seeing Charli go through much worse, and knowing that she wouldn't be pain - today would be "seamless"...but it wasn't.


On a happier note - we feel so pleased and so blessed with our news today...we literally don't know what to do!!


Our life is forever changed, and so are the lives of many people around us. Through all of this I hope we have done something to raise awareness to not only neuroblastoma, but also childhood cancer. In the beginning I remember writing that we did not only want to survive NB, but become better people because of it. That is still my goal.


GOD BLESS ALL OF YOU, and THANK YOU FROM THE BOTTOM OF OUR HEARTS FOR ALL OF YOUR LOVE, SUPPORT, PRAYERS, and DEDICATION TO OUR FAMILY - and NEVER GIVING UP ON CHARLI.