Cure Charlotte

Driving force

noreply@blogger.com (Kevin Rufener Charlotte's Dad) — Mon, 25 Feb 2013 00:14:00 +0000

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

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Wed, 12 Jan 2011 14:30:00 +0000

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

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Thu, 02 Sep 2010 16:01:00 +0000

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

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Mon, 05 Apr 2010 22:02:00 +0000

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

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Mon, 15 Mar 2010 15:44:00 +0000

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

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Fri, 05 Mar 2010 20:03:00 +0000

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

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Thu, 04 Mar 2010 18:54:00 +0000

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

Smarts- And I'm Not Talking About The Witty Kind

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Wed, 03 Mar 2010 23:23:00 +0000

Because anybody with HALF a brain wouldn't have done the stupid, stupid thing I did two nights ago.

There I was, totally innocent, standing in the kitchen, microwaving dinner (hamburger helper, really healthy, just trust me).

My parents microwave is stationed above their stove, and I usually set whatever thing I am heating and eating right on the stove after it is warmed. However, this particular night, my dad was making Sweet Baby Mark's (long story about barbeque sauce that would probably encroach on some kind of trademark infringement), and Carla was making a grilled cheese and tomato soup, so most of the kitchen was being used.

Carla had finished making her food, and I had taken over the area, so before I set anything on the stove I wanted to make sure it wasn't so hot that it was going to melt the rubbermaid containers that I was cooking in.

Before I continue this story, I want to say that in MY defense, most people that use a stove leave the pan on the hot burner until everything cools down. It's sort of a signal that says, "Hey, I used this part of the stove, so it's probably still hot." At least, I like to think that most people do that. And since my parents have a GLASS top stove, it is only that much harder to figure out if it is still heated up or not.

Anyway, continuing on with my story, (and destroying almost all of the credibility that I ever had), I lowered my hand over the heating element on the right- it was warm, but not HOT- so I deduced that the left side was probably the same, and laid the back of my entire right hand on it.

Big mistake.

Because apparently, Carla had JUST finished making her grilled cheese on that burner, and moved her pan to the back of the stove leaving the burner uncovered.

Needless to say, I will never be a professional chef, because even I am pretty sure that no one in America goes for charred fingers with a side of bonehead.

I also found out that it is very hard to count money and type with a bandaged hand. Luckily, I am down to three band aides and a bruised ego, both of which are healing little by little.

So, if you were wondering why I haven't written anything lately, I plead temporary insanity.

Because only someone who has totally lost their marbles would put their hand on a hot stove.

Kristi M. Rufener

Going Semi-Pro

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Fri, 26 Feb 2010 16:07:00 +0000

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

Why People Run Alone

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Thu, 25 Feb 2010 15:49:00 +0000

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

Sulking

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Wed, 24 Feb 2010 14:07:00 +0000

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

Good Things Come...

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Fri, 19 Feb 2010 17:10:00 +0000

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

The Morning Show

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Thu, 18 Feb 2010 21:04:00 +0000

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...

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Thu, 18 Feb 2010 19:43:00 +0000

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?)

Of Ups and Downs, and Media Blitz's

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Wed, 17 Feb 2010 21:46:00 +0000

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

My CNN Rant

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Tue, 16 Feb 2010 21:08:00 +0000

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

ALERT! New Diet Fad- The Facebook Fast!

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Wed, 10 Feb 2010 21:59:00 +0000

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

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Wed, 10 Feb 2010 21:38:00 +0000

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.

If It Quacks...

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Tue, 05 Jan 2010 19:05:00 +0000

I now know why they call it "practicing medicine".

So, most of you know the story, but since I get so tired of repeating myself (not meant to make anyone feel bad, but telling the same story over and over does get old...sorry) I am going to tell everyone what happened to us as thoroughly as possible.

On Thursday, December 17th we met with Lisa Keller (NP) and Margo Hoover-Reagan (Primary Onc) at the AFCH.

We ran into Dr. Catrine on our way in, and had a nice chat with her where we then discovered she was leaving Ped Oncology to work with kids on the fifth floor, and end of life care for children. We are sad to see her go, but know she will do wonderful- she is one of the most amazing doctors I have met in my life.

After chatting with Dr. Catrine, Lisa and Margo came in and sat Kevin and I down and explained our options based on the latest MRI and CAT.

After much consideration, Kevin and I made the heartwrenching decision to go with surgery. We based our decision on the predicted outcome, and the ability to determine if the tumor was dead/dying.

They scheduled Charlotte's surgery for Tuesday morning, the 22nd- yes, three days before Christmas.

The reasoning behind THIS was the surgeon we wanted would only be at the hospital until the 26th, and then would be on vacation for three weeks after Christmas, and, let's face it, we couldn't sit and stew over this for three weeks without recanting our decision.

Then I got the phone call from the surgeon explaining the surgery.

I was so blindsided that I forgot the list of questions I had for him.

I was thrown off with words like Dura (the layer of tissue enclosing the spinal cord) and Hemilaminectomy (the process of removing part of the bone on the spine to gain access to the tumor). But the one word that struck me was spine- Woah woah, wait a second... Lisa and Margo had told us they wouldn't be anywhere near her spine...

That pushed me to call Margo back and question HER, who then called the surgeon to question HIM, who both then decided that one- her tumor had been measuring incorrectly in the first place for total reduction (because, apparently, there is a specific way to do it according to the study she is in), and two, Margo didn't think the surgery would be beneficial anymore. The risks outweighed the benefits, so to speak.

They were going to reassess her tumor shrinkage, and get back to us.

Tuesday morning rolled around, and we didn't feed Charlotte according to surgery rules, and I finally received the phone call at around nine a.m. confirming what I had dreaded- that over the last week all of the heartache and headache and painful decisions were completely unwarranted. The tumor had now shrunk too much for surgery.

You would think we would have been relieved to hear that- well riddle me this:

How can you be relieved when the people you have trusted with your child's life the past seven months basically effed up?

Medical practice- because occasionally we DO get it wrong. And my personal favorite- well, medicine isn't an EXACT science.

But here is the other funny thing- I'm also not as mad as I thought I would be.

Because Charlotte is in such a gray area, we have NO definite answers as to what our next move is. We are stuck at an impasse- and now I received an email from Lisa telling me that they are presenting her case to a commitee within the hospital on this Wednesday, the 6th of January, and we should have some options then. She will be calling me.

All well and nice, and everything is back to "normal"... I hate that word, by the way.

And while we are waiting, you should know a couple of things:

1. We don't want to do chemo. Without any sort of idea whether that tumor is shrinking, growing, dead, dying, staying the same- whatever, it's still adult ~~poison~~ medication, and we don't want the risks that come with that. Who wants to beat a cancer only to have another one spring up a few years down the road? Or to have to explain to their child when they are older how they "Just might not be able to have children of their own" because, hey, we were playing it "safe" and decided to give you a couple extra doses of that good ol' chemotherapy.

2. Charlotte has FULL leg function back- that's right, you heard it here first! She is standing, crawling, climbing stairs, and trying to walk. Look out world, hello bruises!

3. Charlotte has her hair back! I know how utterly trivial that sounds, but you cannot FATHOM how uplifting it is to cuddle her (inasmuch as she will allow you to cuddle her) and rub her little fuzzy head under your chin. It is more soothing than a lavander bubble bath on a cold day...

So that, in a nutshell, is what's going on.

And hopefully I have some good news tomorrow.

Thanks for reading as always-

Kristi Rufener

The Cure: Insomnia

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Thu, 31 Dec 2009 16:26:00 +0000

So, for a while, the idea of me writing a book has been tossed around.

Here is a crude sample of chapter one- please BE BRUTAL! I want to know what you think...is it worth it?

Do you ever get Deja Vu? You know, the feeling that you've done something before and you are just repeating this action?

Last night I had a dream. In this dream, I could fly. Just by pushing off from the ground, I could gain enough height to clear tree tops.

There were no other people in my dream. It was only me, and everything else in my town. The streets, houses, schools; everything was normal except for the absence of people.
If I leaned forward and jumped, I could shoot forward far distances. I zipped around town with my arms spread out to my sides like Peter Pan- a movie I watched on VHS when I was child until it no longer played.

Still, I remained in my hometown, alone. It didn't matter what direction I set off it, I would inevitably stay stuck in the city.
It was eerily quiet, no cars, no dogs, no kids at the playground.
I had considered flying up, but the power lines loomed over me as though waiting to snatch me out of the sky should I attempt it.
I finally sat on the ground, frustrated with this ability that I had, but lacked the ambition and courage to put it in action.
I was stuck.
Grounded by the weight of what if- what if I hit a power line? What if I jumped too high and couldn't come back down? What if I couldn't breathe when I got too high?
And there I sat until another thought struck me- what if I don't try, and I stay here forever, alone?
With that, I stood and braced myself.
I shot off the ground like lightening, trees zipping past me, up through the power lines which seemed to cower at my sudden determination.
I was exhilarated. I was powerful.
Higher and higher, the houses became specks in the distance, the clouds caressed my face, tears ran down my cheeks and fell to the Earth below, the last bit of me that would be left behind in the world.
Higher and higher until the sky slowly darkened, and I felt lighter.
Then suddenly, I was viewing the Earth from above, circling slowly like another moon.
And the exhilaration I felt became overshadowed by the knowledge that I was the only entity in the entire universe, and that no matter how far I flew, this would remain true.
That's when I started to fall.
Past the clouds, toward the hard unforgiving ground, the power lines reaching toward me greedily, waiting to snatch me out of the sky.
I tried to scream, but no sound escaped my lips, my flying ability suddenly non-existent.
Just as I was certain to hit the ground, I awoke in my bed next to my husband.
I laid there silently, blinking, willing the world to take shape in front of my eyes.
My husband sighed, rolled over and threw his arm around me, pulling me to him.
I was alive. It was only a dream.
And then a small noise- the type of noise only a small baby can make. A sort of mewling, like a tiny kitten rooting around for it's mother.

And that tiny noise brought the world crashing down.

Exhaustion...

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Fri, 18 Dec 2009 03:18:00 +0000

Here is the usual "It's been a while" cliche, followed by the boring updates that have occured since the last time I updated my blog...

Except that it hasn't been so boring and mundane, and my life is anything BUT cliche- in fact, I don't think there is even room for cliche when cancer is involved.

That being said, since my last post Charlotte completed her chemotherapy, and went into the next phase of her study, the surgery consultation.

So, Kevin and I met with Doctor Hoover-Reagan, and Lisa Keller today at the Children's Hospital to discuss what our next course of action would be.

We were basically told we have three options:

1. We can surgically remove the remaining part of the large tumor (about two inches by a half inch), biopsy that piece, and if it is cancer free, we accomplish remission. (Also note that there will be remaining tumor around her spinal cord in the spinal column, that particular part is considered inoperable due to its location)

2. We can take the "wait and see" approach, in which we get MRI's every three months and wait to see if anything changes. The negative aspect of this is that if the tumor would start growing back, we would be in for a helluva ride... We would run the risk of the cancer being more resistant to chemo, and possibly paralyze her again- assuming it grows back into the spinal column.

or

3. We can do a simple biopsy, where we would run the risk of accidentally taking a sample from a dead part of the tumor and missing a "live" part, thus getting the false impression that the tumor is dead, when in actuality it's still alive.

So, how do you decide?

This isn't the doctor cutting your child's umbilical cord, this is a real-life slice and dice surgery, with general anesthetic and stitches, blood and guts and vital organs. One sneeze that could cut an artery by mistake.

Ok...so...no surgery?

So you decide to wait it out, take the "safe" road, only to find out later you made the wrong decision and now your baby could die?

Well, I'm not going to keep you in suspense. Kevin and I did decide to go the surgery route, though I can't really tell you why. It's not as simple as a cut and dried pros versus cons situation, but more of a title thing... To me, at least.

To me, I want what we have been fighting for since day one... our remission.

Lisa is going to call us in the morning to see if we can get her in Monday- if not, it will have to wait until after Christmas.

I didn't get what I really wanted for Christmas this year, but at least I still have a baby to smile at me, who's sweet tuft of hair that's finally growing back tickles my nose when I smell her head, who's toasty hugs and sloppy kisses make every day worth waking up to.

And as usual, when I know more, the rest of you will.

Sorry this isn't as cheery and upbeat as usual, I'm sure you understand. It's taking the last bit of my energy to update all of you.

We are all okay, just tired and drained.

As it turns out, being disappointed takes a lot out of you.

God bless, and I will update tomorrow when I hear more.

Kristi Rufener

Want to Make a Difference This Holiday Season?

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Tue, 24 Nov 2009 17:14:00 +0000

Put a smile on a child's face by donating a toy to the American Family Children's Hospital!!

(Now through December 23rd)

The holiday season is upon us, and I have had several people ask me lately how they can help my family.

The short answer is this-

Hey, we are okay!

So if you want to "help" my family, do us all a HUGE favor and make a donation to the American Family Children's Hospital.

That's right- I am running a toy drive for AFCH so that the kids that HAVE to spend THEIR holidays at the hospital have some toys and games.

I am looking for DVD's (pg13 or younger, used OR new), toys (easily washable preferably, though we are also looking for small gifts), and board games and books.

If YOU want to help my family, or someone else's family and help put hope back in the hearts of many this season, make a donation.

Gifts can be dropped off at Starion Financial in Middleton, or at Belleville Schools with Pam Christen, or with ME personally- Kristi Rufener.

Email me for more details: kristirufener@hotmail.com

The Chosen Mothers

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Tue, 10 Nov 2009 23:35:00 +0000

The Chosen Mothers

by Erma Bombeck

Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mother's of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for rogagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, partron saint Greard." Finally, He passes a name to an angel and says, "Give her a child with cancer."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child ccasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I SEE....ignorance,cruelty, prejudice....and allow her to rise above them."
"And what about her patron saint" asks the angel, his pen poised in mid-air.
God smiles and says..."A mirror will suffice."

Made In The 80s

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Wed, 28 Oct 2009 22:22:00 +0000

There I go again, waiting WEEKS between updating the blog, and even left it at a cliffhanger to those still waiting for results from our CT scan!

Long story short, Charlie's CAT scan came back AWESOME!

There was absolutely NO CANCER in her liver... *insert giant sigh of relief here, along with some enthusiastic fist pumping*

She has since finished cycle 6 of chemo, and has been doing fantastic.

www.curecharlotte.blogspot.com is now up and running- look there for updates on our war against childhood cancer. You will find articles to support my outrage and research.

On to today...

So, last Thursday, Bekah and her class got to visit the Intermediate School (where gramma pam works) to see the African Safari Acrobats. On her way out, she ran up to Gma Pam to give her a hug, and Gma noticed that Bekah felt warm... Upon further temperature taking, she discovered that Bekah was running a fever. And had a headache. And the crap hath hitteth the fan.

Because then there is ME, AT WORK, and KEVIN, AT HOME, having a war of the worlds on our Blackberry's over what Kevin and Charlie should do.

We finally made the decision for them to evacuate- and it turned out to be the right one.

When Gma got home with Bekah, I sent them straight to the clinic for H1N1 testing, and went off to Bekah's parent teacher conference. Which turned out smashingly- she needs to study her math more, but as it turns out she is quite an avid reader... Which, of course, I knew since she spent most of the summer with her head in a book.

The clinic then informed us we wouldn't have results for at least 48 hours, and since it was a Thursday we didn't expect to hear anything until Monday.

So, say helloooooo to the weekend from aych ee double hockey sticks.

A kid that was spiking a fever to 104 from 99 in less than ten mintues- faster than I could get medicine in her- followed by a rough cough, terrible headaches and chills, and a Mom (that's moi) who is running through hand sanitizer like it is ambrosia from the God's, and trying not to openly wince in front of my poor sick babe so she doesn't feel like she has the plague... Which is pretty much what it was like, since I can't risk contamination.

Right up until Monday she ran that fever until it finally broke. That's when I received the call that confirmed what we pretty much already knew- Yep. Check her for the curly tail and oinks- the kiddo has the (insert scary music here) Swine Flu.

Lord, why dost thou hate me so?

I finally shipped her off to school this morning just in time for her Halloween party (thank Jesus, otherwise she would have pitched a fit about that all weekend as well), and now we have to wait for her to be completely symptom free before hubby and baby can come home...

So, now it's been a week since I last smooched my husband, and last cuddled my Charlie girl... and it's getting weirder every day..

Like a throwback to my single life, when it was just Bekah and I, living in my parents house... And I would like to say its remniscent of the good ol' days, but lets face it-

I want my family back...

And my own laundry...

I'm starting to get recruited for... *gasp* chores!

More news soon!

Kristi Rufener

Abomination

noreply@blogger.com (Kristi Bemus Charlotte's Mom) — Fri, 16 Oct 2009 18:57:00 +0000

Some dirty, rotten, low down scoundrel put this irresistably impossibly delicious looking tin of cookies on the corner of my desk... Someone had better do something about this... I am going to just have to march right up to them, point my finger in their face, and let them have it... Right after this one.... nom nom nom...