There is a lot to think about, not a lot to worry about!

The phrase in the title was said by a father of four who passed away from cancer. Their family was featured on Extreme Home Makeover. I am sure I didn’t get the quote exactly right, but you get the point!

We went to Omaha on Friday for round two Charli’s expect eight treatments. Let me tell you that walking into the cancer clinic for the first time is something I will never forget. You walk into a room where suddenly everyone that surrounds you understands you, and knows what is ahead of you. Although we didn’t see any children Charli’s age we did see them all ages – probably from age 3-16. These kids sit and play video games while they receive their treatments, play jinga while having their vitals taken, etc. It is just what they do. They are not going to let ‘this’ interrupt what they are doing! What a motto for life, huh?!

We waited for just over three hours before being admitted into the hospital side. It is all a waiting game, it could be 30 minutes or it could be all day – each time will be different I imagine.

On a good note – the doctor is pleased by the amount of ‘progress’ Charli is already showing. We are going to push back the MRI until after the 4th cycle. Originally this was planned for sometime in the next two weeks or so. We were able to bring Charli home less than 24 hours after treatment. She is very tired and is not eating the best, but we experienced that last time and are not surprised. But, when she plays she PLAYS! We will continue to give her the same shot we did last time for about 7 days or so. And now we will give her an antibiotic twice a day for the next 9 months or so, this is given orally though – so no shot there! This is to reduce her risk of getting pneumonia.

Let’s see…what else? Charli is cutting her SECOND tooth! You can barely see the second one, but the top one is pretty visible now! Charli likes to stand again! She is gaining strength in her legs and will do it for longer periods of time now! She is also tolerating being up on ‘all fours’ again! When she was feeling better she would rock and try to scoot!

I can’t think of anything else! Oh…Charli tried a few new foods this weekend – watermelon, pudding, and pineapple. AND – she liked all three of them!!

All for now :-)

These are my PJ's - a little big, yes!

My first chemo! This was donated by www.headhuggers.org (if any of you have this talen I ask that you consider donating some time and some hats to this organization!)

Daddy is the proud owner of this shot! I could be the poster child for a "BABY DEERE" line!

Just another night hanging out with daddy!!

The Easter bunny brought me this dress...I think it is so cute, I can't wait to wear it again!

Hearts of Courage

My son Marcus survived his second heart surgery with complications that resulted in his need for a Tracheotomy and Ventilator support.

What was suppose to be a two-week stay at the hospital turned into eight hard, long grueling months of commuting from work to hospital, overnight stays, cafeteria food, and sleepless nights in a chair by Marcus’ bedside.

I have a child with a tracheotomy and a ventilator. I needed to be able to accept that or I could not bring my son home.

When Marcus came out of surgery, and I saw him for the first time, I did not cry…I looked at him with all the love I had before the trach and I knew that I had made it. I knew that I would be able to go through this with him and we would somehow move on with our lives.

About 8 months later, we were at a doctor’s visit and as we wheeled Marcus into the crowded elevator, a woman next to me gasped, “Oh, what’s wrong with him?” as she stared at my son.

Puzzled I looked at my child, I did not notice anything out of the ordinary, no hair was out of place and I did not see anything oozing out of his nose, he was asleep.

“What’s wrong? Nothing is wrong, he’s asleep.”

I realized then that I was exactly where I needed to be.

Brigitte C. Ramirez
Marcus’ mom.

www.heartsofcourage.com/grieving.html

do it anyway...

Anyway - Martina McBride

You can spend your whole life building something from nothing

One storm can come and blow it all away

Build it anyway

You can chase a dream that seems so out of reach

and you know it might not ever come your way

Dream it anyway

God is great,

but sometimes life ain't good

And when I pray it doesn't always turn out like I think it should

But I do it anyway, I do it anyway

This world's gone crazy

and it's hard to believe that tomorrow will be better than today

Believe it anyway

You can love someone with all your heart,

for all the right reasons,

and in a moment they can choose to walk away

Love 'em anyway

God is great,
but sometimes life ain't good
And when I pray it doesn't always turn out like I think it should
But I do it anyway, I do it anyway

You can pour your soul out singing a song you believe in

tomorrow they'll forget you ever sang

Sing it anyway,

sing it anyway

I sing, I dream, I love, anyway

Happy Easter!!!!

Grandpa & Grandma PreisterPlaying on grandpa's belly!
trying to spit on grandpa!!!
I just woke up, can you tell!!?
Grandma and I looking at birds!
This is how I started...
...and this is how I finished!
The Easter bunny brought this hat!
My hat is silly!!
My hat is too big!!!!

I LOVE to dig in my toy box and get my OWN toys!

HAPPY EASTER!!! My shoes SHINE!
This dress tastes funny!
Is it time to open the rest daddy?!
MORE LINKS!!!!!!!!!

Happy Easter to everyone! I didn't think that it would bother me to stay home on a holiday, but it did :-(. Almost every year, every holiday we go to the farm - but not this one. AND, after getting Charli in her dress and shoes, it broke my heart that we would not be able to share her with everyone. BUT - Charli didnt mind! She played and played, and played all day!!!

Grandma and Grandpa Preister brought down supper for all of us, and Charli tried to eat a banana on her own, and didn't like it at all! Then, Grandma and Grandpa Borg came down too! Charli got to stay up an hour past her bedtime! Those of you who know me any my 'schedules'...it didn't bother me at all! Charli had fun playing with Grandma Borg on the floor while everyone visited!

I know I say this all the time - but I have to say it again. THANK YOU. All of the love and support that has been shown to us has been unreal. We have received cards, calls, emails, gifts, meals, notes, balloons, and the list goes on and on. I have gotten some of the nicest notes from people - and let me just say this - God works in ways that we will never understand. And while so many of you keep telling me how much you are learning and gaining from seeing how we are handling our situation - please know that we are learning MORE from the kindness and goodwill that has been shown to us. We would never wish this on anyone - but know that heartache comes in all shapes and sizes. I want every one of you to know that I will personally do my best to pass all of this kindness on to the next person who is in need, friend, family, or stranger.

"Adversity rewrites the stories of our lives, changes the cast of characters, and alters what we expect would happen. Yet the stories go on and someday behind the scenes, we'll find the true importance of their twists and turn."

learning as you go...

"You think you could never love anybody as much as your children, and then a grandchild comes along" - Maureen Shea

Grandpa & Grandma Preister

Grandpa & Grandma Borg

Grandma Deb
Grandpa Preister (again!!)

PS...I love you!

I decided that when your mom starts asking you to update your website…it is time!!

We had no idea how many people were looking here, until we started getting phone calls, cards, and emails from total strangers! It is amazing the amount of people that Charli has praying for her. I believe that is why she has been doing so well so far. So, ‘thank you’ – to all of you!

Not a lot to update, so I imagine that is good. Charli is continuing to have more good days than bad days, so we are very happy about that! We are scheduled to go back for Round 2 of chemo April 13th (yes it is FRIDAY THE 13th!)

I don’t think I have mentioned this before on here, so I will throw it out there now! Charli’s grandma and grandpa Preister are heading up a benefit for her, and to raise awareness for childhood cancer. ISN’T THAT AMAZING! I know they will get help from the other grandparents as well as aunts, uncles, cousins, friends, etc…we are so blessed with helpful people. This will take place on April 29th, if you would like more information please let me know!! It sounds like it will be fun, Jody has done a great job planning and putting this together. We are grateful. The event is going to involve motorcycles, cars, trucks, food, drink, and prizes! Sounds like a great time, right?!!!

Again – thank you for all of your well wishes, we continue to see the blessings in our life each day as something or someone touches our hearts. We can only promise to pass along all of this goodwill.

Charli is sleeping beautifully and peacefully in her bed now, so I better end this before she decides it is time to play again!! HOW FUN IS BEING A MOM?!!!!!!!!!!!!

is being able to SMILE always this fun?!

CONEHEAD!!! I am going on a walk with mommy & daddy!

Grandma Preister DREW this picture of me!! She called it "charli tickeled pink"!!!!

If you have gotten this far, I would like you to post ATLEAST one thing that you are thankful for!! I will start!! I am thankful for Charli's health, friends, family, and the kindness of strangers.

...your turn!

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!