how DO you do it?

I bet I am asked this 10 times a day! I want you ALL to know...that if need be - YOU COULD DO IT TOO.

I think that in the beginning of all of this, it was a little easier to accept. I don't think I really realized (and probably still don't) the "big picture", but slowly I am starting to see the reality of it all. I am not sure if today is just an 'off day' or what, but I am just seeing things in a different light today I guess!

Charli's counts have "hit bottom" according to the nurse, that made me cry. I don't know why...I knew it would happen, and we were just waiting. The good news, she can only go up - right!? It just made me realize how truly long the road ahead may be.

You go through pregnancy thinking that if you can make it past 12 weeks you are fine. That is not true, terrible things can happen at anytime - sadly I have seen this to be true. THEN, you think, once you have the baby and you leave the hospital that things are going to be fine. WRONG. Obviously, no one really believes that - because bad things can happen anytime (just like good things can happen at any time too!). But at least I was under the impression that having normal well-baby checks was enough. I am not trying to scare anyone or anything like that…just trying to get some thoughts out, so please don’t take any of this wrong. You just never expect to have this happen to you. Famous words, right?

Sometimes I think that because Charli acts like she feels so good all the time that it is easier to accept that she is ‘sick’. But then, like today, I see her lying so peacefully and perfect in her crib just like a “normal” baby…and it breaks my heart.

Someone told me today “you don’t always have to be tough Brenda.” But if not ‘tough’, then what? Sad, mad, angry, hurt, jealous, envious, hopeless, faithful? I am all of those things too, trust me.

Most of the time when people tell me how amazing they think I am doing, or how well I am holding up – I feel guilty…because I am not always like that, although I try to be. The way I look at it is this – at this point in our life we have few options on how we can handle this. We can wonder why (which I do), and have it take over my life – and change our family in a way that we can never undo. Or, I can TRY to look on the bright side of things. Either way, one day Charli is going to grow up and want to be a normal kid…only one of those options will allow us to go on and be “normal”. To me, the choice seems easy.

Having said that, one thing I need to work on is just accepting this and embracing it – and not try to write it off. So many times I find myself telling people, “it could be worse, we are lucky”. And, I TRULY believe this too. However, we still have a problem on our hands…no matter how big or small others may think it is. But, this is our problem to defeat…and we are working on it – one day at a time.

Benefit for Charli...

THREE THINGS!!

I got this email from a friend, and I wanted to share it all with you!

Three things in life that, once gone, never come back -
1. Time
2. Words
3. Opportunity

Three things in life that can destroy a person -
1. Anger
2. Pride
3. Unforgiveness

Three things in life that you should never lose-
1. Hope
2. Peace
3. Honesty

Three things in life that are most valuable -
1. Love
2. Family &Friends
3. Kindness

Three things in life that are never certain -
1. Fortune
2. Success
3. Dreams

Three things that make a person -
1. Commitment
2. Sincerity
3. Hard work

Three things that are truly constant -
Father - Son - Holy Spirit

I ask the Lord to bless you, as I pray for you today; to guide you and protect you, as you go along your way. God's love is always with you, God's promises are true. And when you give God all your cares, you know God will see you through. Pass this along to People you want God to Bless - I just did!

~~~***My God Reigns***~~~

fight for the cause - not against the diagnosis

*I took this post from another neuroblastoma mom...I thought it was very well written for someone in these shoes. I wanted to post her words for others to read. You can visit her link on the right of this page under "cancer mom".*

Don't Pity Me
I can tell when you're doing it. I see the look on your face, and I can tell.People sympathize, they feel pain with us. Often, they have been through this type of experience--dealing with cancer face-to-face, hospital waiting rooms and random acts of kindness and unexpected lab results. I truly appreciate that sharing look, the understanding look of those who feel that pain and want to make it better.But the other folks. The ones who are secretly thinking--I'm so glad I'm not you. It's no secret. We, the people you pity, can see it in your eyes. I know you hang up the phone and tell someone that I'm 'holding up remarkably well', or that you 'don't know how she does it'.Guess what? I don't want your pity, and I don't deserve it.Don't get me wrong, it means a lot to me when someone will listen to my story. I can't tell you how much strength I've received from friends, acquaintances and strangers who are moved by my family's predicament and our fight against it. Your pity doesn't help fight. It doesn't help me keep going on the days I want to stop and scream. All it does is drain me--and I can't afford that.Thanks.

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!