Thursday, March 22, 2012

wrap it in a bow and call it life!

Thursday came and left with no news, which is good news!  Charli did great at her appointment, which we were expecting...yet we need that confirmation!  Next year she will have a scan on her heart to verify that one of the drugs did not cause any damage.  Aside from that, and a little needle stick - it was all fun! 

with the redesign of Children's Hospital we can be out and about with our pager in hand, and not wait impatiently like we did years ago!  Charli loves to watch this little ball maze!

mom and Charli waiting for the annual blood draw, I think she always sits on my lap.  This may be, perhaps, for my comfort and not hers?  Who's to say?!

Not even a flinch when she got the poke, though she was annoyed at they kept squeezing her finger and wiping the blood away rather than putting it in the container at first!

After her appointment it was off to "her big day".  As you can see it meant anything and everything she wanted for lunch at the Amazing Pizza Machine.  This was her fist time getting her own glass of pop, in addition she had ice cream, cookies, brownies, and a slushy.  Oh, and a little pizza too :-)

mom and charli getting ready for a ride to start!  It was fast!!

one of Charli's favorite parts of the day...the racetrack!  These two like the say they won, I may beg to differ.

Charli's competitive animal side came out on this, she trapped total strangers in the corner and would only let them go when we either had to tell her, or bumped her out of their way!  She was in her zone on this ride!

She had a great time!! (we all did!)

And, for $70.00 in pizza and game tokens we cam home with eight ninjas.  Overpriced, says who?!

this picture would  make "grandpa" Ernie's heart melt.  This is his tractor which Chad had restored.  The kids (big and little, as pictured above) enjoy rides and driving this around!


This is Charli's plant/pet grass named Justin.  She discussed naming it after Justin Beiber, are you kidding me?!!  She later said that was NOT the case! 

i love this picture!!  Charli has her hand on his shoulder in such a sweet way!

as Chad called it "our red neck afternoon"...they love to ride together!

Harper was able to move around a little quicker with this tow-strap on his peddle tractor!

cute!!  She will give rides to anyone who asks...if you are interested!

"As we were growing up my sister always acted like she didn't care about me, but the truth is I know she could protect me like no one else because she loves me like no one else."  ~ author unknown ~

Wednesday, March 14, 2012

and then we hit FIVE

five years
1,825 days
43,800 hours

For 43,800 hours we have lived with the word cancer directly in our life.  And let me tell you, sometimes it feels like I can remember all 2,628,000 minutes of this journey.  But the amazing thing is, I remember it with a little sadness, but most of all with hope.

I will never look back on the day we found out Charli had cancer and think "yee-fricken-ha, look what we get to do now"  but I will always look back on that day and think "we had no idea what we were in for", but this does not always mean it was tragedy. 

Charli's cancerversary, a day I celebrate and lament
Charli's cancerversary, a day which broke my heart...and put it back together again.
Charli's cancerversary, a day that I thought took so much away...but one that put so much new in its place.

For the past five years I have had something to say about this event.  What could I possibly say today that hasn't already been said?  "Charli had cancer, Charli survived, end of story"?  This is not the truth.

I mean, don't get me wrong.  Charli did have cancer.  Charli did survive.  That is NOT the end of the story. 

Five years ago we were distraught.  We were broken and battered.  We were fragile, unsure of the world we lived in, and standing on others two feet as we could not put ours on the ground. 

Four years ago we were hopeful, a little less fragile and putting pressure down on our legs.

Three years ago we were building our strength and starting to walk on our path.

Two years ago we were solid, and leading where others would maybe want to follow someday.

One year ago, we were a little wobbly again.  Charli was having strange stomach pains which were causing her to be sick a lot and causing everyone who loved her a lot of stress.  After some testing, scoping, and "doctoring" we moved forward...with some confidence, some medicine, and a little fear back in our stride.

Today as I sit and write this, we are filled with hope.  We are strong, yet fragile.  We are walking on our own feet, knowing that others are always here to hold us up even when we don't need it. 

I guess there are a few things I could write about that I maybe haven't before.  I could tell you story after story of amazing friends who have held me while I cried in fear and frustration for this journey, "why do we always have to worry about this", "why does this always have to be our my mind when something is wrong", "why do we have to worry so much about a stomachache".   I can give exact examples of friends bringing me my favorite treat, just to make me smile and remember that while this is my life...the journey is not mine alone. 

Charli's cancer didn't just change her. 
It changed all of us who are reading these words. 
 Did it change you? 
I am guessing it did...or you wouldn't still be here. 

Neuroblastoma has brought a lot of heartache to my life.  Can I tell you how it has changed me?  Probably not, this is all I have known.

Neuroblastoma has brought a lot of clarity and stability into my life.  I look at my life, today, and I know that I would not be doing what I am doing without that bump in the road.  It makes me wonder what Charli's path will be, this experience was not about me, but look how much changed for me.  I hope and pray we can guide Charli in a way in which she can reach her potential.

So as we "celebrate" and "lament" this five year cancerversary I am filled with a mix of emotions.  I want to celebrate...and I want to lament.  And you know what, I probably will!  I know that I will have another crappy opportunity to lament this damn disease the next time Charli's medicine stops working and I start to wonder if that is really what is causing the consistent stomach problems.  I know that when this time comes I will turn to the same people I always do who have to talk me off the ledge and help remind me that I need to find the balance between "typical mom" and "cancer mom", but though it was five years is NEVER gone.  NEVER. 

It will happen again.  The fear, it is never gone.
I will call my friend who's husband is a doctor and see if she can ration with me between motherhood and medicine.  I will walk to my coworkers office and she will remind me that it does suck, and it is okay to be so torn up about the way it leaves me feeling.  Then I will go home and put the brave, yet slightly irritated, face on because I wouldn't want to cause fear in anyone else...yet I can't hide it because of all the irritated crabbiness I bring with it!!  I will turn to my wonderful friend who has a son who is also a survivor, and she will calm me down - like I have done with her in the past. And many others will help in my processing of what may seem like regular everyday things, but aren't just quite as regular as I would like them to be. 
This is what we do.  This is how we survive!

It's not all heartache and tears though...we have had a lot of 'amazing' on the road.  A lot.  And one thing I know without any uncertainty...
I cannot wait to write about year six!

if you have a wish...make it!

You may have read the link I posted a day or so ago about Charli's fun!!  Here are a few pictures leading up to the party, and a few others!

a surprise gift left on our porch of "captain hook" was just what Charli needed to get her through a long week!  She was super excited to open it, yet not sure why she got it!

playing so nice!  Legos would fill this truck, and when it would dump they would all fall on a big flatbed trailer below!  Nice thinking kids! ;-)

Harper was trying to get many animals to play nicely together this evening!  I am not sure you can see, but in his pen was a cow, goat, pig, two deer, and a dog...with grandpa feeding them!

Charli's bathroom mirror masterpiece!  These are fun to use when the moment is right!

cowgirl-up ya'll!!  This may be Charli's 'new' favorite shirt...paired with pants which are too short and her loved boots!

just chill'n -- too cute!

Harper was driving a bus...then he added another row of seats, but still wanted to be a backseat driver!

getting ready for the party!

Charli getting a few goodies to get her excited for the trip!

Make-A-Wish even got a few things for Harper, Charli was happy to share a gift with him...after she had hers of course!

The kids got a few goodies at the party too...these were CARS suckers - classy :-)
Charli *Ryen*Macey
both of the "woodys" for the night had already taken their costumes off!!  These suckers were a hit, thank you old navy!  (of all places to buy a sucker!)

snapshots of life

fashion statement!  Harper rocked his rain boots most of the day....with his pants IN the boots, of course!  The look on his face here makes me really scared for future moments in his life, he looks naughty with no regrets!

best purchase ever, perhaps!  The kids each bought a 4-wheeler a few weeks ago and they played all evening having races, pull offs, and other redneck activities in the kitchen.  Love those kind of toys!
Charli was very proud of the goods!  Here is her senior picture pose with them, I guess?! the end of a long weekend this is how Chad handles "being in charge"! 
Great idea Chad, great idea!

Tuesday, March 13, 2012

13 days....if you're counting!

I do have several pictures and stories to update on, but since those haven't happened yet I wanted to share this link for those of you who haven't had a chance to read or hear about this yet!