Driving force

Wow it has been a long long time since anyone has written in this blog. I know I'm not the usual author of this blog but I wanted to let people know about a huge fundraising effort that we are working on as well as comment on a few things.  Over the past few years our family has been through a lot of great things and it seems like even more not so great things many of which you have read about in this blog throughout the years.

One of the constant questions I get as a  young parent that has been through so much at such in such a short time is: "How do you stay positive and get through everything that you have been through?"  The truth is there is no way to stay positive all the time it is inevitable that you are going to get down and want to give up at some point in your life especially when life throws so much at you at once.  So what keeps us from falling apart or giving up? For me the answer is very simple above all else no matter what happens there will always be 3 (yes there is now 3) beautiful ladies that need me to be strong and lead them through whatever life puts us through.

Things have been up and down since the last post with a few moments where I wanted to just say forget it since obviously some things haven't worked out as planned.  What do you do when things get you down or you get frustrated in life? Without sounding too much like Forest Gump I started running (again) and concentrating on my little ladies. One in particular pulls me through the toughest times because of what she has been through when I'm out on a long run and I think about slowing down or maybe just skipping the next run I simply picture her in the hospital bed hooked up to Chemo with her family all around her fighting for her life. That image drives me to take the next step and press on no matter how tired or sore I am I cant be stopped because I know that she never gave up fighting no matter what.  Many nights in the hospital I wondered if she would ever have a normal life and know what its like to grow up.

She just turned 4 a couple of weeks ago were approaching approaching her third year of remission things seem to be fairly normal at least as close as we will ever be to normal. Bekah is doing great in school always on the advanced side of her class always the most advanced spelling words.  Shes getting so big and so grown up these days acting very much like an adult even though I tell her to slow down and hang on to being a kid for as long as she can. Charlotte is scheduled for kindergarten screening already which seems like is coming up way to fast. Everyday she impresses me with her vocabulary and understanding of what is going on around her. She has been a big help with her little sister Victoria which is almost 2 already.  It will be interesting as these 2 grow up since they have very similar daredevil attitudes and they both think they are invincible.  How many 2 year olds do you know that would climb up on the highest point of the couch and think its a great idea to fall/jump towards the chair...  I hope that number is very low and that she is a rare but awesome breed.


As many of you know there was a lot of support out there when we were treating Charlotte and fighting cancer. Many of the organizations that helped us are always in need of support themselves so this year instead of just helping them with small one time donations we plan to raise money throughout the entire year. Part of our fundraising effort is a per mile sponsorship as we prepare for events that will take place in September (Childhood Cancer Awareness Month). We are taking per mile donations as well as many other running challenges throughout the year in a quest to rack up over 200 miles before September.  We have a few people pledging per mile and a few that will be pledging based on milestones (every 50 miles etc).  I would love to get a few people sponsoring my running effort so please check out the webpage for more information www.curecharlotte.com/running.htm. Another thing that we will be doing the first week of September is a shaving event (although its just me at the moment) where I will be shaving my facial hair as well as getting a ribbon etched into the very thin layer of hair remaining. At this point I am planning on letting my beard and hair grow out till then so the change will be more notable. If someone is interested in donating or getting fancy hair cuts to help us raise awareness please contact us. Thanks for following us through the years we really appreciate your continued support.

-Kevin Rufener-

Charlotte's Dad

Lapse

Where has the time gone??


Charlotte is going to be two in a month, Bekah will be eight in April, and Kevin and I are having another baby in June.

Actually, small creepy factoid- this baby is due June 24th. Otherwise known as the day Charlotte was diagnosed with cancer.

What has happened the last six months or so besides all this?

I got a new job after taking the summer off to travel with my family. My parents got a new puppy, AND a new Harley. All of Charlotte’s scans have come back unchanged, and we have spent a lot of time playing with cousins and visiting family members with reckless abandon, seeing as how we don’t have to worry about blood counts and getting sick as much anymore.

And speaking of Charlotte, she has learned to talk. And not a few words here and there- complete sentences.

However, sometimes her manners leave something to be desired, and her father and I will go rounds with her just to get her to say please.

I was eating a bagel yesterday morning, and she sidled up to me, pointed, and declared, “Mom? I want some.”

“You need to say please, Charlie.”

“No.”

This went on for a good ten minutes or so until I was down to the last bite of bagel. Then, my phone rang in the kitchen, and in my haste I set the piece of bagel down on the end table and went to grab my phone.

When I came back, the bagel was gone.

“Where did my bagel go???” I asked the obviously guilty one with the cream cheese moustache.

“I dome mo!” She replied over the massive amount of food in her mouth.

Maybe I should give her the benefit of the doubt- I myself have some short term memory problems…

Childhood Cancer Awareness Month

Let's face it- September brings a lot of memories and emotions for everyone on this list.

And throughout Charlotte's journey, I have had the honor and privilege of getting to know a great many people fighting this battle. Heartfelt touching stories of survival, devastating stories of loss, amazing stories of hope and courage.

I sometimes feel that we have endured far less than many of you. Our journey was relatively short (albeit terrifying), only chemotherapy agents and GCSF shots, basic PIC and Hickman line care.

I have laughed with many of you, and, unfortunately, cried with many more.

At the end of our road, when we could choose to go on and "pretend" to go back to normal, my husband and I made the decision to press on. We aren't starting a non-profit, and we don't have as loud of a voice as some on the list (I commend you all!), but I DO feel like we have been able to give a many the chance to speak, and others still a reason to listen.

We committed to everyone in this battle in the hopes of repaying the kindness and compassion we were showed every step of the way.

Now that September is here, we wanted to go the extra step.

We don't have any head shaving marathons in our area, but that is the first thing that entered my mind.

Surprisingly, I was met with both a lot of support and also a lot of resistance. People asked me if I was crazy- didn't I care what other people would think?

I only hesitating a moment before I realized- no. Not at all. If it attracts attention, isn't that what I wanted anyway?? The opportunity to have people question me so I could explain?

So I didn't hesitate when I hopped in that chair, and I didn't flinch when I heard the clippers buzz.

I did it for my daughter, I did it for me, I did it for every child we have on Cure Charlotte.

I did it for the children who didn't get to choose to lose their hair. I did it for all of you, still suffering no matter the outcome of their childs battle.

You might think this is where the story ends- but something more amazing to me happened.
My seven year old daughter- who watched her baby sister go through it all with the understanding of an adult- sat down after me and demanded to be shaved as well.

I asked her if she was sure- what if the kids made fun of her?

And she said, "I will tell them I did it for childhood cancer. "

In all my years of being a mother- if I had ever doubted myself, it vanished in an instant. I have never been more proud than I was in that moment.

Off came the curls, replaced by bravery, courage, and most of all, love.

May God grant you all peace in the coming year, and may we continue on this journey together as a united front.

Celebrate ever day and remember- its only hair. It will grow back.

Besides- rather than a bad hair day, I am now having a no hair day.

With everlasting hope,

Kristi M. Rufener
Sent from my BlackBerry® wireless device from U.S. Cellular

A Break in Routine

Because we have a lot to celebrate this year, (the latest being Charlotte's remission - declared on March 31st, 2010) we decided to extend our yearly hotel stay by an extra day. We had to dig deep in our pockets, but the weekend ended up being crappy outside, so it turned out beautiful.

And, it reminded me why big kids can be just as much fun as babies, and how husbands can be clumped into the big kid category.

Point in case- for those of you utterly enveloped in the Twilight Saga, New Moon was recently released, purchased, and played on Kevin's laptop in our hotel room. The following conversations ensued:

We are at the part where Jacob (the drool worthy werewolf) is speaking Quiliote to Bella Swan (the awkward, klumsy, not-that-pretty girl who never has anything intelligent to say, and where did she end up with ten smoking hot friends anyway??). After listening to Jacob mumbled his sweet nothings, my best friend Rachel turns to me and says, "I wonder what that means... Do they say in the book?"

And my husband, God love him, without missing a beat, looks at Rachel and translates for us:

"It means, 'He who farts will not have many friends.'"

Yes, we may have been tired, but no, none of us were drunk, especially not Kevin who has never so much as tasted anything alcoholic in his life except for Nyquil. Aren't you proud?

But wait! There is more!

Rebekah, my pride and joy on this planet, who is one of the most clever six year olds I know, biased or not, had a couple of great insights herself.

There was an instance when we were in the pool, dangerously close to the deep end, and Beks was bobbing around with a basketball near a group of kids close to her age.

"Why don't you see if they want to play ball with you, Bekah?"

She looks at me exasperated and says, "I can't mom! I am only four foot three!".

Lesson one- once they start reading numbers, including the depth meter on the pool, you can no longer convince them to do anything fun or dangerous.

Later on, on our way back up to our room, outside the elevators, she spotted a You Are Here sign with the arrow tacked on our location.

"MOM!" she squealed in shock. "How do they KNOW where we are???"

Lesson two- just because they are reading does NOT mean they are comprehending. And therein lies the humor of it.

Hope everyone had a great Easter, and is enjoying their family, much like we are every day!

Kristi M. Rufener

Tonight - A Poem

I rocked with you tonight
I breathed in the Johnson & Johnson smell of your soft hair
The peach fuzz that stubbornly returned
After chemo had claimed everything but your laughter
It moves as I exhale.

I wanted to snuggle
To pretend you were still brand new and vulnerable
When nothing could calm you except your pacifier and swaddle blanket
Before you were diagnosed
But you won't have it.

You would rather fight
And sit up and twist around and smile in my face
The wide toothless smile only an infant can master melts my heart
Begging me to put off your bed time
And get on the floor and play.

Common sense tells me you need to sleep
Your body needs to rest, to regenerate
The cells that were killed off, and the nutrients you lost
When you couldn't eat because of the nausea
That no amount of medicine would help.

When I look at your tiny cherub face
I wish I could still see the innocence of your youth
That has instead been replaced by the solemnity of facing your own mortality
Cancer has robbed you of your babyhood forever
Before you even realized you had one.

But my mothers intuition argues this
It says set her down and make her happy
Don't check the clock, don't replace the pacifier that fell out when she grinned
Make silly noises and tell secrets
Giggle until there is no room for worry.

She might be tired in the morning
And there are more exhausting days to come
But I refuse to let cancer take this away from us
When it has taken so much already
You can nap tomorrow, and we can have tonight.

Kristi M. Rufener

Bargaining

There are some things you give up when you go on a diet, and then there are some things you don't.

Hubbard Avenue Diner pie is one of the latter.

And today, in celebration of Bill McDonough's second year at Starion Financial, one of my co-workers showed up to work with said pie.

I know she didn't do it to spite ME, even though I have been wroking my butt off the past two weeks to get fit.

But there it sat...staring at me with it's creamy goodness... An Irish Cream pie with cute little green shamrock sprinkles...

I knew I was going to have some. It was inevitable.

So I compromised.

I spent my lunch as follows- one half hour was used for the car wash, which was ten people deep (always a guarantee in Wisconsin as soon as it hits fourty degrees), and the rest of my lunch was used for a one mile walk.

After making sure I was still in my calorie goal for the day, I rewarded myself with half a slice of heaven.

Worth it? Definitely.

And I know I can hit my fitness goal as long as I "Keep my eyes on the pies".

Kristi M. Rufener

On Subliminal Messages

Last night was my third night on the C25K program, and by the end of the 1.19 mile jog/walk, I was in agony.

And not the good kind of agony where your lungs burn a little, and your muscles are weak, but you feel accomplished; nope, the kind of agony where it feels like someone cut your leg open and ripped out your tendons and muscles from your feet to your knees.

Kevin briefly joked about running ahead and getting the truck to pick me up, and I choked out a laugh and muttered, "Don't be silly," even though in the back of my head I was ready to cop a squat and flag him on.

It took every ounce of strength I had to drag my sorry butt to bed, and even more so to get my feet close enough to me to take off my shoes.

I figured I would feel better after some rest, right? Wrong.

Woke up this morning and it feels like there are tiny people in my knee high boots stabbing me with razor blades.

Got filled in by one of my coworkers (who works out regularily, something I didn't even know EXISTED!) that I probably have shin splints, and need to take a week or so off until they feel better or I could cause a stress fracture.

Now, if this isn't my own body sending me a message, I don't know what is. I guess shin splints are your body's way of saying WOOOAH, slow down a little here or I'm going to cause you unnecessary pain. (Or, as I like to think it's telling me, "Maybe you just weren't cut out to be a runner. Why don't you try your hand at competetive sleeping?")

So for the next week I am going to try walking a mile in my shoes and see if that helps.

On a side note- I think it's time to go back a year and remember what Charlotte looked like before she was diagnosed, and where she is now. So without further ado:

And here she is now:

(We are working on our sharing...)

Got Milk?

So, now that I typed that excessively long post, do you think I can count that as my exercise for the day??

Kristi M. Rufener