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What started out as a site to update on our daughter's cancer has thankfully grown into a site to update on our beautiful family of four. Enjoy our journey...

Thursday, May 31, 2007

slow dance

This is a poem I found while going through some inspirational quotes, etc, and I wanted to share.

SLOW DANCE
Have you ever watched kids
On a merry-go-round?
Or listened to the rain slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.
Do you run through each day on the fly?
When you ask How are you?
Do you hear the reply?
When the day is done
Do you lie in your bed with the next hundred chores running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.
Ever told your child,We'll do it tomorrow?
And in your haste,Not see his sorrow?
Ever lost touch,
Let a good friendship die cause you never had time to call and say,"Hi"
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.
When you run so fast to get somewhere you miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.

This was written by a little girl who had cancer, to live life to its fullest since she won't get to. It makes you think about how important the little things are and to not worry so much about all the day to day petty stuff

Wednesday, May 30, 2007

1/2 way there...

I am sorry I haven’t updated since Charli’s treatment – things have been busy here!

Charli went through her 4th treatment just as strong as ever! She ate really well in the hospital (compared to what she normally does) and slept fairly well too! She was all smiles for the nurses and even got some fun play time!

On Saturday Charli was able to have play time in the “play room” at the hospital. She crawled around there like she was a pro! It was the first real time she got to crawl, and she was great at it. She liked so many of the toys; it was cute to see her crawl to what she wanted. But, she got tuckered out pretty quickly so we didn’t play long.

We came home as scheduled on Sunday and Charli was glad to be home…she crawled all over looking for her “brothers”. I think she is starting to become attached to them, and was a little sad that they weren’t here. She does like when they give her attention!

Since we have been home she hasn’t eaten that well, but hope that will change in a few days.

Charli continues to progress so well, it is fun to watch. She is pulling herself up in her crib, crawling like crazy, and becoming such a big girl! She has had a night or two of really great sleep, and we hope that continues.

In two weeks we will go back to Omaha for more tests and scans. The doctor is anticipating seeing that the chemotherapy has been working, but not enough to consider surgery as an option now – and will continue with 4 more cycles. Time will tell. I think that will be a long and hard day. Even if we get the answers we are expecting it will be sad knowing we have 12 more weeks of chemo for Charli. But…this is the plan we started with and can’t be too discouraged by it, as long as it is working – that is what is important.
are you kidding, I can touch that. MOM, did you hear what daddy said?!

okay, let me feel again...so soft!


is it just me, or does this John Deere steer a little hard?

okay daddy, where's my leash?

more - more -more


I learned that I can reach things "outside" of my crib, if I try HARD enough!



on our way to the play room, for the VERY first time...I had so much fun!




this was my most favorite toy in the joint...it was a blast!


FASTER DADDY....FASTER!




showing love to grandpa

Tuesday, May 29, 2007

Mary Englebert

"Not what you do but how you do it,
is the test of your capacity."
*this was my quote for the weekend on my Mary Englebert calender...*

Sunday, May 27, 2007

greif

I found a story about grief in a stack of papers today. I am not sure where it came from, but I found it very touching - and most importantly, true.

Grief is like a wound. At first, it’s open, bleeding, raw, and terribly painful. In time that wound begins to heal. It heals from the inside out. The pain begins to fade and eventually a scar is formed. There will always be a scar. We will never be the same.

Grief has physical sensations. Our heart is screaming; it physically hurts. There is a knot in our stomach and a sinking feeling happens when we think about our child or the future. When we think, we feel and when we feel, we hurt.

Healing the wound of grief is allowing ourselves to feel the pain, to recognize the loss of the dream, to cry, to experience the intensity of the moment and then to move on. We wipe our eyes, dust ourselves off and move forward into living the day. We know the pain will come again. It will be felt and experienced again. We will move forward again, and on and on.

There will come a time when we begin to think we're going crazy. "I must be losing my mind." "I was doing better at first than I am know." Not crazy, the numbness has worn off - healing can begin.

We can never understand. No one will ever have the answers to the questions of “why” or “what if”. No one will be able to make sense of the loss you feel. It is useless to try. What we CAN do is acknowledge the loss we feel and try to live each day as best we can. Let our act of living, feeling joy, allowing ourselves laughter, creating and dreaming new dreams. Grief is appropriate, but it must be allowed to heal. Our quality of life is found in our strength, our resilience and our ability to create a new and meaningful life, for ourselves and our family.

Saturday, May 26, 2007

sometimes bad isn't always THAT bad...

As I sit in our hospital room - this is what I see...
My wonderful husband crashed on the "couch" sleeping so peacefully. Three feet to the left of him is our (nearly) 10 month old baby girl, sleeping so beautifully. She is has no idea what is going on today, or in the days past - and we hope her life (as she knows it) won't be effected. So, really...when is it all said and done, what we are going through...is it really THAT bad?

Don't get me wrong, it is a living hell to be Chad and I (and other friends and family) but we are just bystanders...ya know?

I was just sitting on the desk in Charli's room, looking out the window at all the cars going by - thinking that I have no idea what those peoples lives are like. It is true that I feel we have had our share of hardships, but there is no quota for heartache...so dwelling on the past ones won't do any good! In reality, if it weren't for all the bad, the good wouldn't mean anything. Everyone has heartache.

What I am trying to say, is that underneath all the heartache and pain we have had over the past three months, I couldn’t ask to change anything. Obviously, I would love for Charli to be cancer free. However, going through this process has put so much of life into perspective for my family…and I hope for others too.

When all of this is said and done I hope to say, “Hi, my name is Brenda. My daughter is a neuroblastoma survivor, and my life has been enriched because of it!” I pray that through her diagnosis we will make a difference for someone who will be diagnosed in years to come, and that the world will be a different and better place because of all of this. I truly believe this will happen, and it will be because of YOUR love and support.

Friday, May 25, 2007

4th round...

Well, we are down in Omaha for the 4th treatment of Charli's cycle. She is being 'normal' for Charli...not napping, not drinking her bottles...you know the "usual" Charli! She did play with another boy in the clinic today, and tried to do some crawling while we were there but we didn't let her. Oh, did I forget to mention that she is crawling!! She started with a few 'steps' Wednesday night and was doing better by Thursday already!

Uncle Dillon came to babysit with Aunt Amanda on Thursday. I think Charli loved that! They played with his sports card collection and I heard he even helped her to fall asleep! He was able to watch her crawl around and walk with help! I think that they both enjoyed their time together.

Charli got a few new John Deere toys over the past few days. One of them is a truck for her to sit on and the other is a steering wheel! This was a very special gift from daddy!!

Enjoy the pictures and have a great Memorial Day weekend!!!
this is my mask that I have to wear when I go out in public!

playing in the clinic!


GGRRRRR


mommy 'feeding' me my paci at nap time!

my newest John Deere toy from daddy!


my new John Deere rider, mommy bought this!

I got stuck under the coffee table, and ALL mom did was laugh and take my picture


me and uncle Dillon (Wynston and Kasper too!)

daddy calls me a "thug" here, what is that?!

me and uncle Dillon looking at his cards...I thought they were NEAT!

the BIG 2-0

ATTENTION - ATTENTION:

20 people have now dontaed their locks!!!!!!!!!!!!!!

way to go everyone, lets bump the goal to 30!!!!!

UPDATE: LOCKS OF LOVE

Hi everyone! I just wanted to post a quick update and more information. First of all, thank you to all of you who have offered to donate your hair - I know that it can be hard to part with hair...but I am so proud of all of you for doing it! To me, hair as never been more than just 'hair' but I understand that for some it is a bigger deal...so THANK YOU!

My original goal was for 20 to donate, but I thought that was too steep so I cut it to 10, today we have 19!!!!! WHAT A BLESSING!!

If you think of it, before you chop your locks - take a BEFORE picture, and then an AFTER! If you are going to send me your hair please include the picture or you can email me. If you send the hair in on your own, can you please send the pictures anyway?!

Again, thank you so much. It means so much to me that you have done this for the children who need this service...you have touched and helped so many lives, WAY TO GO!!!!

Tuesday, May 22, 2007

inspiration from the heart...

I have been given so many inspirational words and motivational talks that I wanted to share some of them with you today. The first set of words are from an old friend. She created an amazing book of quotes to fit our family. Thank you Kelly!! Other words are from a book my very good friend Linda gave me. She has given me so much inspiration and motivation in my life. And finally, the last story is from a book I inherited when my Grandma Borg passed away. I am sorry it go so long…there were just so many things I wanted to share!


When you put faith, hope, and love together you can raise positive children in a negative world. – Zig Zaglar

Children will not remember you for the material things you provided but for the feelings that you cherished them.
– Richard Evans

You gain strength and courage from confidence by every experience in which you really stop to look fear in the face. – Eleanor Roosevelt

Pray and let God Worry. – Martin Luther King Jr.

Courage is fear that has said its prayers. – Dorothy Bernard

We could never learn to be brave and patient if there were only joy in the world.
-Helen Keller

Words can be a powerful healing tool if used with loving intention to lift, encourage, and inspire. – John McLeod

Experience is not what happens to us, it is what you do with what happens to you.
-Aldous Huxley

Try as much as possibly to be wholly alive with all your might, and when you laugh – laugh like hell and when you get angry, get good and angry. – William Saroyan

Tomorrow isn’t a promise, it is a chance. – Rachel Joy Scott



IF I ONLY KNEW:
That even when everything in my life seems to go wrong and come crumbling down around me, even when my heart is broken, God has promised to always be with me.

That grief and heartache could be so deep and devastating; I would have been there more often for others.

That anyone can bring words of comfort, encouragement, and healing, who knows how many lives I might have touched?

That even a child’s days are sometimes cut short, I would have wished for more long nights of rocking you to sleep.

That God created me for a purpose; I would have passionately sought him to discover what he desired.

That when God closes a door, he opens another, I would have been less afraid of change and more welcoming of opportunities and adventures.

That it is not enough to empty my life of wrong, but to fill it with things that truly matter.



Bad things may happen to us, but they do not change who we are.

Courage is doing what you must when doing what you must is the hardest thing of all.

The apple tree itself, if it ever found a voice, could tell us something about life: Bow to storms – they will pass. You can bend in the wind without breaking. You don’t know how strong you are until your strength is tested.

Fear and worry are normal natural reactions to threats, but so are courage and hope…and they are the stronger, the more enduring.

Just knowing that we’re cared about can brighten even the dark of the bleakest winter day.

REMBER WHAT MATTERS…this is a story taken out of a book I was given after my Grandma Borg passed away nearly three years ago. I thought it was fitting.

Candlelit bubble bathes, sunset bike rides, and Victoria magazine with a cup of hot tea in fine china are terrific simple joys, aren’t they? But how do you slow down long enough from a life hurtling past at the speed of sound to make from for them if your life?
The best way I know is, remember what matters. As we tear through our days, so much of what we thing is absolutely urgent isn’t really all that important, ultimately. Let’s suppose you have just found out that unexpected guests are about to arrive at your house. Suddenly you’re wild with anxiety, trying to straighten up the house and swab the dust kitties out of the corners and wipe out the counters and get the toothpaste splatters off the bathroom mirror. This must all be done in between pulling together a lovely little spread you can lay out for them on the dinning room table, of course (after you whisk away the piles of mail and the kids’ homework papers).
This is a tough one for me because I like to have my things in order. I don’t want anything in my home to reflect poorly upon my as a creative homemaker. But you and I both know that getting everything looking just right isn’t half has important as being emotionally available to those people when they come in the door. It’s a big step for me to be able to say “It’s all right if the place isn’t perfect, because what really matters are relationships, no appearances”. So let the kitties rest, order a pizza, and enjoy your guests…and your intact sanity.
That’s a housework example, but the principle fits just about everything: so much of what flusters us just doesn’t matter. It absolutely doesn’t matter. Ask yourself, What is the bottom line here? Set your sights and shape your perspectives around whatever you and God come up with in answer to your questions. Hold on to it tightly, and ease your grip on all the rest. You just might find yourself unwrapping a few everyday gifts you didn’t know you had.

Monday, May 21, 2007

no way....

I forgot to mention this Saturday!

Someone by the name of Sara Henn, from Lindsay, got married Saturday. While in Amanda's shop getting her hair done for her wedding that day she asked about Charli. She said that she wished there was something that she could do to help. So, Amanda being the great Charli advocate that she is - said that after the wedding she could donate her hair!

So, Sara said "do it". As in...right now. On her wedding day she cut 10" of her hair off. CAN YOU IMAGINE? How selfless.

Anyway...I just wanted to acknowledge her for doing such a great thing!

THANK YOU SARA!

Sunday, May 20, 2007

oh happy day!

We have had a few really good days this week - and it has been awesome! We (chad and I) have really gone out of our 'zone' and did a few NEW things with Charli this weekend! Saturday night we suprised Grandpa Borg on his birthday, by taking him an ice cream cake, on the farm! We haven't been there since Christmas. I LOVED IT! We showed her the cows, and she got to study a cat! She played so nice there, it must be a 'grandparent' thing. She was great!

Sunday we took Charli with us to HyVee to get groceries! We went early in the morning, so there weren't many people there...but it was a big step for us! We also took Charli to the park to go down the slide for the first time!!

We had a great weekend...we felt halfway "normal" today!



go daddy, go....let's slide!!

daddy wouldn't let me run the backhoe :-(


mommy & i getting ready to go down a slide, real fast!

mommy was so PROUD, I didn't even try to EAT the rocks!!

mommy, daddy, and i...such a good way to end the day!

Saturday, May 19, 2007

Penelope's story

this was on MSNBC awhile ago, but I was not aware of it. I thought some of you might like to watch it...to gain a little more information about her story and the fight of her family.

http://www.youtube.com/watch?v=FnxaOx6anEw

heaven has another angel..

For those of you who have been following Penelope's story - I wanted to let you know that she passed away early this morning, with her parents at her side.

My heart aches for this family, and the other family and friends who have been faithful to her. I know that she is free of pain now, and will be watching over her family and other NB fighters.

This world will be a sad place without this special girl, she was something else...

Thursday, May 17, 2007

baby bear

I wanted to post an update, but I don’t have a lot to say. I would like all of you to take a few minutes to visit Penelope’s site (there is a link to the right). She is an amazingly strong girl who is having a terribly hard time right now. Please visit her site, learn a little about her, and if you’d like – post a comment for her parents to find comfort in. They will do amazing things in finding a cure for NB, I just know it.

Charli has been having a rough day. We aren’t sure why. She slept horribly bad last night – like up 12+ times from 11:00 – 5:00, bad. I can’t decide if it was a “pain” cry, or a “come give me some love” cry. She didn’t eat or sleep that great today either. I know that all kids have ‘off’ days…but I will always have this fear that the tumor is growing when she acts like this. We won’t truly know until the MRI in a few weeks.

Treatment number four is on for next week. I pray that it is as ‘gentle’ as can be on her system. Treatment #2 was the worst to date, and knowing that it “could” be like that again is hard.

LOCKS OF LOVE UPDATE:
As of today I have had 12 people offer to donate their locks!! That is awesome, that is TEN FEET OF HAIR!!!!!! These 12 people are a mixture of adults and children. Amazing that kids would be so willing to help, isn’t it? Thank you to those of who you have offered your hair. I know that it is only hair, but to those who receive the wigs, it is so much more – so much more.

Wednesday, May 16, 2007

MAKE A WISH

I received this in an email today, please take a few minutes and a postage stamp to send this little boy a birthday wish!!

Hi guys, this link is to a little boys web site who's wish was to receive a million birthday cards before his birthday on May 30th. The address is on his website if you would like to help his wish come true. Also, please forward to everyone you know. =) _Click here: Shane's Wish_ http://www.shaneswish.com/

Tuesday, May 15, 2007

PLEASE READ...LOCKS OF LOVE!

Hi everyone…I NEED YOUR HELP! (I am sure I will post this one or more times)

I will make this short and sweet; I am donating my hair to locks of love, and looking for other volunteers.
WHAT WE NEED: 10” (or more) of hair
WHAT IS ACCEPTED: colored, permed, and layered hair
There is a link to the LOCKS OF LOVE site, located to the right – under sites to visit!

I am not trying to guilt anyone into doing this, although I think that everyone should donate! Charli is not old enough to use this organization, however if she would relapse – she may need this service.

This organization provides wigs and hair pieces to men and women (children and adults) who have lost their hair due to the cancer treatment process.

You could give them the gift of their confidence again. We are lucky that Charli is not old enough to understand the strands of hair as they fall out – but if she were a few years older, I can’t imagine how I could dry her tears, as she can’t brush her hair.

My goal is to find 10+ volunteers to join me in donating their hair. So far I have three adults and one child that will join this ‘fight’. Amanda, my sister-in-law, told me that the average persons hair grows ½” a month. This means that in 2008 we would all have enough to donate to this cause, and have our “old” look back!!

If you are interested in doing this with us, send me a note or get in touch with me somehow. I would like to keep track of everyone, and have all of our locks sent in together.

I know that we will reach this goal, and truly change the lives of several people – and what is better than that. I feel so motivated by this; I wish my hair could grow out over night!!!

Take some time to think this over, and please consider it. It doesn’t matter how long or short your hair is now…we will wait for your locks!

nothing's gonna slow her down!


I hope all of you moms out there had a great mother’s day! I wanted to post something that day, but I wasn’t on the computer at all. I had a great mother’s day!

We started off the day with an early morning walk around the neighborhood – it was nice! Then for lunch we had a picnic in the park! Charli loved looking around at all that was going on. That evening Chad picked up Applebee’s for supper, and “did the dishes” after! Grandma and Grandpa Preister came for a visit, and so did Aunt Amanda & Uncle Brad.

Charli has been doing really well since her last treatment. She has a very bald spot on the back of her head, and is thin on the sides, but she has her top pretty well! So, I am going to push for a baby mohawk, but am guessing daddy will say no!

She has been a bit “off” the last day or so, but I think it has passed. Her counts seem to be doing well, so I am hoping it is not a sign of something to come.

Well, there are lots of pictures for you to enjoy!


I am going to go swimming for the first time today! This suit is from Grandma Preister



brrr, it was cold - but I didn't mind!! I had so much fun 'swimming' with daddy!
ha ha...check out the mohawk! mom said I should get one, but dad brushed it out a little later :-(




grandma & granpa preister came to visit me sunday night! we had fun!


these curtains are the best toys ever...I could TRY to use them as a blanket I bet....


I'm ready dad, let's go for a walk!



seriously mom, do I NEED another hat? You're right, I do look cute in them - but come on!




I SWEAR I like these glasses!!


I just prefer them in my mouth, and not on my nose!

daddy took this picture of me and mommy on mother's day!!





Friday, May 11, 2007

life as we know it...

Life as we know it is pretty good today! Charli seems to be feeling great - and her counts were good today. Granted, she is still receiving her daily shot...but they could be worse.

My brother is receiving his PhD from Virginia Tech tonight...I am so proud of him! He has spent several years working on it, but he is working on something he seems to love. LUCKY HIM. He is so smart and talented!
We hope that all of you have a very happy Mother's Day!!!

As you can tell, this is a pretty random post - enjoy all the chaos!!!

this is a picture of my "first" haircut. After I developed a bald spot earlier this week, mom & dad decided to give me a very mini cut, so we could keep a little peice of my hair. It was a hard moment for mommy, but Aunt Amanda was there for her!

daddy hates when boys where their hats like this! But seriously...what is cuter than this?!


mom is always sneaking around with her camera....!

just wanted to drop in to tell you all "hello"!!


My nephew graduated from high school last week. Isn't he handsome!

Tuesday, May 08, 2007

reality check...1,2,3

Today started out as a really great day, and it ended okay...but it was the in between that was a little rough.

Charli is feeling pretty well so far. She is doing so many cute things. She likes to stand and walk, while holding my fingers. She laughs and giggles, just like a “little girl”. She sparkles when her daddy walks into the room and she loves to touch Kasper’s fur!

She did get sick twice today, but nothing major. Nothing that a moms hand couldn’t wipe away!

I left Charli for about 5 minutes today(daddy stayed home with her). When I got home Chad pointed out that Charli’s hair was coming out in chunks. I was sick. A few weeks ago you might remember me saying that we say hair on Charli’s sheets. This is different; there are ‘chunks’ of hair on her dress tonight. I ran my fingers through her soft baby hair, and about 20 pieces came with it.

While I did it, she laughed. I told Chad that if it didn’t bother her…we shouldn’t let it bother us. He went out to mow, and I sat on the couch and cried. This disease is just eating away at her little by little…and this is just a reminder of it all.

I know that it is just hair…so please don’t tell me that. It is more than that – it is a symbol of all that is going on. It is emotional, and it sucks. Real literal huh, there is no better word…it just sucks!

So, I called my great friend Linda…and she felt bad with me. Sometimes it is nice to just have someone be sad with you once in awhile…but in true “Linda” fashion, she picked me right back up again!

So, now my balding baby will sport her hats and bows more often – and look incredibly stylish doing it! All I ask is when you see her; you don’t say…well it is just hair - because to a mother of a cancer fighter, it is much more than just the hair.

I haven’t posted pictures in far too long…so I better catch up!



life is always better when grandpa is around!

look what's down there!


you're silly mom...give me my toy back!


hurry up and take the pictures, I am on the go!


but I think I will rest first!
this is the most expensive $12.00 John Deere tractor ever!!
(grandpa preister bought it at the auction for over $100!! -- thanks grandpa!)

mommy told me this picture was for the 'hemmer boys'!


"sassy just like momm"...why do people laugh when they read this?!

ahh, look mom. I am TOTALLY standing!

thanks for the new hat mom :-)