Friday, February 26, 2010

Going Semi-Pro

Today is day four on my new routine of running and eating better.

This morning, I had to DRAG myself out of bed and out the door to go for my jog. I couldn't believe I was going, and had almost succesfully talked myself out of it- but I'm glad I didn't.

After a few minutes I felt energized; and frozen. The wind chill was in the single digits, and my face felt like it does when the dentist injects you full of novocaine.

I made it almost a mile, came home and made some scrambled eggs for Charlotte and I to share.

Now, since my husband is starting to realize that I am sort of serious about this running thing, he is excited to join me. He had me buy him a pair of running pants, and told me I needed new shoes if I didn't want to hurt my feet.

So, we are adventuring to Kohl's this afternoon to get me the perfect pair of feet pleasing plodders.

Tell me something... how boring are you getting when the prospect of buying tennis shoes is thrilling?

If by next week we are discussing my fiber intake, somebody please smack me.

Kristi M. Rufener

Thursday, February 25, 2010

Why People Run Alone

It's been said that if you plan to change your life, you need someone to motivate you.

Well, last night my husband did just that.

For the third day in a row, I paid attention to my eating habits by starting a "food diary", and began walking. I decided that this was going to be the year that I learn how to run.

Let me start by explaining that I have NEVER been a runner. A biker, yes, runner, notsomuch. First, there is the boobage issue. I have always been, shall we say, a little top heavy, which apparently doesn't work in my favor when trying to coordinate the breathing with the pavement pounding. Also, I am lazy. I know, that shocks you, having two kids and all- when does she find the time to be lazy??

It's an art. Don't even try to replicate it, it takes hours of doing nothing to be as professional as I am.

So, back to my story about my journey to be a runner- I talked my husband into going with me last night. My husband was a cross country runner in high school, and can still just get off the couch and run for 6 miles without killing himself. This has been a big issue for me, as I have always been secretly jealous.

I had no idea what was so fun about running, but as soon as you get out and pop those earbuds in and listen to a little Smashing Pumpkins, you feel like you can take on the world.

That is, until your husband points out that when you run, you shouldn't be able to hear it from half a mile away.

He tries so valiantly to explain how I am wasting so much energy because my foot strikes the ground from heel all the way to toe, and that I should be running on the balls of me feet.

I correct that, but then he is laughing about how my toes are pointing in when I try to do that.

I finally think I have it- until I notice that I can still hear my feet "slapping" the ground, and he is barely making a noise.

I think I pinpointed the problem however- he bounces like he is weightless, and there is a reason Nike doesn't make running shoes for elephants.

Maybe tonight I will wait until he falls asleep, and sneak out with my dignity and attempt some more soundless steps.

Then again, how does an elephant "sneak" anyway?

Kristi M. Rufener

Wednesday, February 24, 2010


I get irritated, sometimes, when mundane things happen.

Which is kind of funny, if you think about it, because I spend most of my time griping that I wish we could have "normal" problems.

Kevin backed into a parked semi trailer while plowing the other morning, which just fueled the fire toward my hatred of the job anyway. Of course, he doesn't see it my way- that every year plowing is costing us more money than he brings in. And I sort of get panicky when I think about what we are going to do if he ever REALLY wrecks his truck. I mean, yes, he has insurance, but if he ever has to file a claim big enough to buy him a NEW truck, we won't be able to afford the insurance anymore!

Charlotte is getting spunky- I'm not sure if she thinks having cancer entitles her to be a brat, but she really can lay on the sass sometimes! Now, if you tell her no, or stop her from doing something, she hits! Maybe Rebekah used to do that too, but I can't remember her doing it at one year old.

I put her down when she gets hitty, which of course only enfuriates her.

She also is a music lover, though, and dances when you hum the simplest tune. She laughs all the time (well, okay, whenever she ISN'T throwing a baby tantrum) and especially so when Bekah is involved. Last night, Bekah made her laugh so hard she fell over- what was she doing that was so funny? Pretending to sneeze.

Yeah, I don't get it either.

Kristi M. Rufener

Friday, February 19, 2010

Good Things Come...

To those who email the media, apparently!

Here is the story that NBC15 aired this morning about Charlotte.

Firstly- I would just like to clarify one little detail: Charlotte's tumor was actually discovered in her chest/spinal column, NOT her leg as the article/video suggested.

Other than that, I think the piece was beautifully done! I love how they incorporated the kids that made us our quilt, and I'm glad they got good sound bits of Kevin and I!

However- I was COMPLETELY ECSTATIC over them using the part where I mentioned that our kids are being treated with adult chemotherapy drugs!!! YAY!!!

If just ONE person can hear that and say WOW! I had NO IDEA! Then that's great.

We have reached a lot of people so far, and please keep your emails coming!!

Speaking of emails- not even an hour after Charlotte's Story aired, we received an email (she shall remain anonymous for now, unless she chooses to come forward) from a bus driver for the City of Madison requesting one of our bracelets. She mentioned that her right wrist is seen by plenty of bus riders a day, and she thinks it would be a great way to spread the word.

I was speechless!!

So, if you see a bus driver in Madison with a Cure Charlotte bracelet, PLEASE thank her for our family, and for every other family fighting this battle.

One by one, we are doing this! It is REALLY working!

With everlasting hope-

Kristi M. Rufener

Thursday, February 18, 2010

The Morning Show

We are headlining yet again!

Local station NBC 15 is playing a 3 minute segment featuring Charlotte's story tomorrow at approximately five a.m. and 6 a.m.

They gave us permission (actually, it would be more accurate to say they requested) to post our video on the website, so it will be up as soon as humanly possible, knowing my husband.

Please tune in and tell us what you think!

And a special thanks to both Channel 15 and Channel 3 for allowing us to share our story with them!

Because of you, our viewers have more than tripled!

Kristi M. Rufener

With Friends Like This...

Who needs comedians???

I bet when she sees this blog entry, she is going to feel remorseful...

What do you think?

(Rachel Martell - and this lady is my child's GODMOTHER?)

Wednesday, February 17, 2010

Of Ups and Downs, and Media Blitz's

So, it would seem that our little Charlotte is getting famous!

Here is a link to the video clip of Charlotte on Channel 3 news last Monday.

There is also an article available here on their website.

I was a little disappointed at first, because I got the impression that that was as far as we were going to get with the media. Granted, I shouldn't have felt that way because it was by some sheer miracle that we captured attention anyway.

How many small town people do you know that make the news? We just have a cancer story, like twelve thousand other kids a year.

So, if you saw the video, I'm sure you are curious about the quilt. Made by Mr. Gentilli's class, the quilt is supposed to specifically appeal to babies... Does it?

See for yourself:

I got a depressing email from my insurance representative today.

It said Charlotte won't be eligible for life insurance through them for at least ten years.

To me, it sort of feels like she commited a crime by getting cancer, and the punishment is that her life is pretty much worthless for ten years.

I can't wait to see what the quote is going to be when she does qualify.

Channel 3 is going to be meeting with us- possibly this Sunday- to continue our segment.

We owe them an awful lot of gratitude, it seems.

The executive producer emailed me this afternoon to tell me our story was in the top ten most popular on Tuesday.

One news station down, millions to go!

Bring it on!

We are ready.

Kristi Rufener

Tuesday, February 16, 2010

My CNN Rant

Below is the letter I composed to CNN this morning:

650 cases of Neuroblastoma will be diagnosed this year in the United State.

My daughter Charlotte was one of them. She was diagnosed with Neuroblastoma - a deadly childhood cancer- when she was only 4 months old. After 8 rounds of chemotherapy, she has reached the end of her treatment. Now, we are focused on spreading the word about her illness, reaching out to other families that are going through what we went through, and thanking everyone who has given us support. So far, we have been featured on two local news stations, have our own blog, and our own website. With your help, we could touch so many people that feel like they are all alone in this world.

We don't want pity or sadness- we want outrage.

Of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period.

What are the major challenges currently confronting pediatric cancer drug development?

Cancer in Kids Is Not Profitable!

Cancer is the most common cause of nonviolent death for children in the United States. Ove in 300 children will be diagnosed with cancer by the age of 20 years. Yet, the total number of new pediatric cancer diagnoses is miniscule compared with the total number of new adult cancer diagnoses. Whereas 12,000 to 13,000 new cases of pediatric cancer are diagnosed in the United States yearly, a staggering 1,368,030 adults were diagnosed with cancer in the United States in 2004. For additional perspective, there are more cases of breast cancer diagnosed in New York State each year (15,190 in 2004) than there are new pediatric cancer diagnoses nationwide. Once pediatric cancers are broken down by individual diagnoses, their numbers relative to adult cancers become exceedingly small.

With the average cost of research and development to bring one drug to market at $802 million and given that 1 in 1,000 new compounds that enter preclinical testing ever make it to human testing and only 1 in 5 agents that enter human trials receive FDA approval, it is little wonder that pharmaceutical companies would hesitate to invest in pediatric cancer treatments.

So, I guess it should come as no surprise that my own daughter was treating with (you guessed it) adult chemotherapy agents in little tiny baby doses.

Because I'm sure you get a million story ideas similar to this sort of rant a day, let me also throw in that my husband and I are fighting this battle at the age of 24.

And I don't intend to take it sitting down.

By the end of school today, 46 more children will be diagnosed with cancer.

Something has to be done to break the cycle.

Where is your outrage?

Thank you for your time.

Kristi M. Rufener

Wednesday, February 10, 2010

ALERT! New Diet Fad- The Facebook Fast!

For all you Facebookers- or "FBs" as us die hards call them- take note!

In the four or so years that I have been a hardcore "user", I have had my shares of ups and downs. I have connected with classmates I haven't spoken to in years (come to find out there may have been a reason I haven't kept in touch), gotten back in touch with ex boyfriends (and there is a reason they are called EX boyfriends, go figure), and posted picture after picture of myself doing stupid things (because for some reason, I had this idea that EVERYONE on my friends list would LOVE to see me at seven a.m. with my hair in a wild mess about my head in my shoddy blue pj pants, watching my then four year old open Christmas presents...).

I jumped into the Lets Make A Group About Anything phase, in which I participated in Born in the 90s, I Bet Wisconsin Can Get One Million Members Before Any Other State, and Track Who's Viewing Your Profile! (By the way, that last one is a SHAM that NEVER works!)

I also got into the fanisms that were going on- Kristi just became a fan of Hey your brights are on, HEY your brights are on! HEY YOUR BRIGHTS- jerk. Kristi just became a fan of Smiling when people say stupid things. And so on.

I EVEN RELUCTANTLY ADMIT that I hopped on the Farmville wagon, and with it came Cafeworld, Fishville, and many others.

But when it got to the point where I was getting impatient in traffic on my way home or texting Rachel my password so she could log in for me (because I waiting two days for those damned crops to grow and there is NO WAY I am going to let them ROT!), I knew I had a problem.

It got so bad at one point, that I had to make sure I was home on Christmas Eve just so I could finally open my 68 gifts under my special Christmas Tree on Farmville. Most of them were fuel. Needless to say, big let down.

So I made a commitment to myself to go offline on FB for a week. AN ENTIRE WEEK- no cheating!

It start Sunday, February 7th, at 7 p.m., and ends exactly a week later- Sunday, February 14th, at 7 p.m.

So far so good! I haven't cheated once!

Not even to satisfy my need to "spy" on people who don't privacy lock their accounts...

I wonder if it really is true that you pick up another bad habit whilst giving one up?

Now, where did I put that chocolate...

Taking Life Easy

Life feels so full of promise lately.

A good friend of mine is due to have her baby in a few short months, and being the person I am, I threw her shower. (I have been dying to do a baby shower ever since mine were born!)

Charlotte has been doing great since she went off treatment. She has a good amount of hair, for only growing it out for the past two months!

She isn't walking YET, but she does put on plenty of miles with her fancy shopping cart walker.

It is so hard to believe (especially going back through the year and a half I started this blog) that she is a year old already.

We have done so much the last year, inlcuding hitting rock bottom, and finally to now; picking ourselves back up again and moving on.

The debt we acquired over the past twelve months should be eliminated by this time next year. Also, we have started to look at houses. Neither Kevin nor I want to go back to renting.We want to find our "home", settle in, stay, and be a family. Now that we have accomplished Charlotte's end of treatment, it naturally feels like the next step should be putting our lives back together and picking up where we left off.

Our next set of scans are on March 11th*, so until then we are just taking it day by day.

I am really trying to be vigilant in updating the blog, but having two kids is keeping me more busy than I had originally anticipated. And even as I admit that, I am plotting on how to bring up a third to my husband- yes, I fear baby fever has once again reared its head. And I love how pregnant women look! Just so pudgy and happy!

My husband, however, reminds me that Yes, I Was Still Beautiful, but he remembers me orenery and short tempered. Must have been due to me being the size of a house with something trying to claw its way out on a daily basis.

I am going to update the blog with a picture timeline of the past year of Charlotte for her birthday tomorrow!

Until then, keep the faith alive!

With everlasting hope,

Kristi Rufener

*Just a note to everyone following Charlie's journey, this particular set of scans are the BIG ones- these are her first scans since she has been off treatment.