Thursday, December 31, 2009

The Cure: Insomnia

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.

Thursday, December 17, 2009

Exhaustion...

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

Tuesday, November 24, 2009

Want to Make a Difference This Holiday Season?

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

Tuesday, November 10, 2009

The Chosen Mothers

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."

Wednesday, October 28, 2009

Made In The 80s

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

Friday, October 16, 2009

Abomination


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...

Monday, October 5, 2009

Lance Harris


I wanted to write a huge post for my year anniversary on the blog, and was all consumed with it until I heard my little buddy Lance was med-flighted to AFCH this afternoon...

I haven't heard much from Lauren (and I don't want to drive her nuts), so while I sit here and wait to hear something other than him being intubated, I am going to ask for everyone's prayers.

Please pray for Lance, we KNOW he is tough, and we KNOW he can make it through this just like he made it trough Neuroblastoma...

Pray for Lauren also, for strength and hope.

We are fighting with you guys, keep your head up!

We love you!!


Kristi Rufener

Tuesday, September 29, 2009

AFCH, Our Home Away From Home

Getting to the hospital for round five of chemo proved to be more of a waiting game than usual.

We were scheduled for Monday, but as luck would have it the entire hospital was full. I guess it's possible, but it's not something that would cross your mind.

We ended up getting our phone call to come in around eleven o'clock this morning.

When we finally got in and got settled, I snuck down to the nurses station to drop off a card for a family with a four month old who was newly diagnosed last week.

I offered to meet them, and sent them a gift card with the card- our nurse told us they were a bit "shellshocked" (and we certainly know how that feels) but that they were planning on stopping by to meet us in the morning. I totally understand, either way.

Charlie started chemo today around five, while I was at work, and got snuck in for a CT Scan at eight tonight. She was a trooper! Our nurse came in and asked if she would take oral Fluconazole- being the know it all mom that I am, I immediately insisted that of course she wouldn't. She hates her meds!

So, being the daughter Charlie is, of course she took them from nurse Amy.

Then, the nurse asked if she would drink her contrast solution in juice- it can't be mixed with formula. Again, I argued against that, saying that Charlotte was the only baby I knew that DIDN'T drink juice...

Charlie drank half of it.

Have you ever seen a grown woman's jaw hit the proverbial floor?

I am assuming from a distance it was quite entertaining.

We also got our pictures from Flashes of Hope Photography, sponsored by the hospital for families with ill children.

I will make sure to get some up tomorrow when I get a chance...

For now, though, I am going to pick my jaw up off the floor where I left it, grab my husband some hot chocolate, and go to sleep.

At least I am never wrong in my dreams.

God Bless!

Kristi Rufener

Wednesday, September 23, 2009

Em Ar Eye Day

Today was an MRI day...

After every two cycles of chemo, Charlie has what we affectionately call "progression MRI's". They monitor the progress of the chemo and make sure her tumor isn't becoming resistent. So far I am playing the waiting game as we haven't got any results back yet.

The good news about today is that we were told she could have sedation instead of full general anesthesia. And this time, we got to be with her when they sedated her.

Now THAT was an interesting experience... It was so quick. She just slipped right into it. Limp like a rag doll. The eyelids just fell shut and she looked so peaceful. It is beyond amazing to me that someone invented a medicine that can do that. Amazing. The anesthesiologist just laughed at me when I told him I could use some of that stuff at home.

To make a long (and exceptionally boring) story short, it ended up being a lot less time consuming because we didn't have the breathing tube to contend with (no croup cough! yay!), and once again she won over many hearts in the recovery room when she came to. I know this is going to sound horrible but I couldn't stop laughing at the look on her face when she reached for the paper that the nurse was holding, but couldn't get it. Because she was still "out of it" she thought the paper was closer to her than it really was. Her confusion was hilarious.

I have been bugging the infamous Lisa Keller all day, and still no results. But plenty of humor from her, which she is always good for.

Now I'm at work and having a war. My sister was exposed to H1N1, and now it is a struggle to keep Charlie from being exposed to it.

For some reason, waiting for the results from this scan are making me more nervous than last time. I have absolutely no reason to think this scan is not going to show improvement, yet here I am- heart pounding, stomach in my throat, staring at my phone waiting for it to ring.

Ridiculous.

Kevin sent me a video of Charlotte rolling today though that has helped pass the time. She has obtained the ability to roll from her stomach to her back, which makes her officially mobile. This is a HUGE milestone for a baby that wasn't moving at all at diagnosis.

I am going to jet for now, but I will blog more as soon as I get results.

God bless.

Kristi Rufener

Wednesday, September 9, 2009

Kristi's List

Things I like: Laying in the sun. The first sip of fountain soda in the glass. Crunching ice cubes in my mouth. The whipped cream on top of a cinnamon dulce latte at Starbucks. The smell of a fresh pine Christmas wreath. Laying in the sun. The way life goes on, even when you want it to slow down.

Things I love: Waking up next to my husband in the morning. Having my daughter read to me. Accidentally catching my baby saying "Mama" on camera. Sweatpants fresh out of the dryer. The way Bekah smells after a bath. The way Charlie sucks her pacifier and snuggles in her blankets when she is tired. Having heart to hearts with my friends.

Things I dislike: People that cut in front of you to turn in less than fifty feet. People that come through the bank drive thru on cell phones. The feeling of porcelain. My mom's new cell phone ring. That I always think about updating my blog, but never get around to it when I'd like. That no one can give us a straight answer about Charlotte's cancer. Trying to reason with my sister. That fact that it doesn't seem like anyone takes my advice, even when I put a lot of thought and energy into it. The way life goes on, even when you want it to slow down.

Things I hate:

I hate coming out the doors to P4 only to stumble upon a couple sobbing uncontrollably in the hallway. It is like catching a glimpse of the people Kevin and I were two months ago. You want to reach out and tell them you will get through it, but how do you really know?

Saturday, September 5, 2009

Taking You Farther...

I am slapping myself in the head right now-

Right after I made last weeks post about this being nice and peaceful, my own MOTHER emails me to tell me I forgot something really important.

Charlie's First Tooth!!
(You can KIND OF see it, if you quint really hard....)





The night before it popped through, she was miserable. Up two hours past her bedtime, chewing on everything, and whiney. I gave her some tylenol (after checking to make sure she didn't have a fever, because that is part of the protocol right now... Can't mask a fever she might have!), she finally settled down and fell asleep.

The next morning, I got her up and while she was smiling at me, I saw a little flash of white. This was milliseconds before the tongue came out, mind you, because it would seem that every time her mouth is open, the tongue just darts out now.

I stuck my finger in her mouth (yes, it was clean my squeamish friends) and something sharp and pointy bit my finger.

I was excited! Then sad. My baby officially isn't a "baby" any more... Now she has toofies! That's my word, using my "two year old lisp". Other well known lisp words are baff (bath), fing (thing; as in "Look at this cool fing!!") and siwwy baby (silly baby). You would do good to memorize those lest we be having a conversation and something like that slips out. It's always helpful to be prepared!

Kev kind of game me a whimsical smile when I mentioned that Charlotte wasn't so little anymore. My father in law, however, had the solution.

"Have another baby! I hope you don't wait TOO long..."

That's his solution to everything. Having a bad day? Have a baby! Got a headache? Have a baby! Break your leg?? Well, go to the hospital FIRST, THEN you best be having a baby!

What does my husband think about it? Ask him sometime. No, really! I like seeing how many colors his face can turn.

Now that she has one tooth, I decided to give her some REAL food...





Now, before you go all postal on me, you should know that NO, I didn't REALLY let her eat the banana like that, but YES, it WAS entertaining. I mashed it up after she got done playing with it, and she gobbled it down...

After that exciting fing (See? Good thing you have the two year old lisp at your reference), life stayed quiet. Charlie's numbers are excellent, Bekah has a cold (and revels in wearing her little teddy bear masks around so she doesn't get her sister sick), Kevin is working on computers, and I am doing whatever needs to be done every day.

I do admit that I have had episodes where I have been a little down, and the other day was one of them.

My head was stuck in this rut where I was focusing on Tuesday and the next round of chemo- remembering how she stopped eating for two days and was uncomfortable in general. Worrying about how I am going to work next week if that's how it goes this time; wondering how we are going to coordinate the holidays without seeming like hermits; and having to call Lauren and tell her we can't make it to Lance's first birthday party because now Bekah is sick, and I feel bad enough when my kids pass it to each other, so I can't imagine how bad I would feel if we got Lance sick.

So I am sitting at work dwelling (*sigh*) and I get this email.

Now, I had mentioned a couple of times previously that I had been in cohorts with Sheila Marquart, one of our HR reps, about taking pictures of everyone in North Dakota wearing Charlie's bracelet...

Anyway- so this email pops up from Tania Christian with the subject line "bracelets", and I open it, for some reason TOTALLY spacing the pictures, and what I see picked my mood up out of the gutter by the scruff of the neck, gave it a hot shower and some snazzy clothes, and fed it a seven course meal with Tiramisu for dessert (because Tiramisu is my favorite, that's why).

What follows is an exact copy of the email I received, and the pictures within:











While I sat there in stunned silence, emails started flooding my inbox. People wishing me well that I work with that have never met ME, much less my family. People asking about my family, telling me to keep my chin up, that they are pulling for us way out in North Dakota. My boss emails me and the entire Middleton group to tell them all how awesome this is, and reminds me to "pay it forward someday" because I really am getting to the point where Thank You doesn't feel like enough.

So now I am completely blubbering at my desk, but it's not because I am bumming out about chemo anymore; in fact, I am almost revelling in it!

Now it's: round four, the halfway mark ALREADY!

And: we get to see all of our favorite nurses again!

And: I can't wait to make her some onsies with the super funny cancer sayings I have been finding; like, "Baldylocks", or "Chemo: All The Cool Kids Are Doing It".

And also typing an email a mile long thanking my coworkers at the Mandan branch (yep, this was just ONE branch! I am still waiting for the pictures from the other branches! Eep!)

So, next time I get all soggy minded and start typing something sad and woe-is-me-ish, just drop me a friendly reminder:

I work with the absolute cream of the crop of society, and I have things to look forward to!

Thanks again, Starion Financial. You have never let me down!

God Bless!

Kristi Rufener

Tuesday, September 1, 2009

Not Too Exciting... Could Be A Good Thing!

It's happening again.





I'm getting really bad at updated the blog.

Already it's September 1st, and I've lapsed 9 days since the last post.

Bekah started her first day of first grade today, and barely even waved at me as she boarded the bus to an uncertain future. Grandpa Mark and I were left standing in the driveway with the dog, watching the bus chug around the corner, and experiencing a weird sense of deja vu... Like maybe the same event had taken place some seventeen years prior, and I wasn't the witness; I was the participant.




It makes you feel old.

Then, you are sitting inside later with your husband wondering where you two will be in twenty years, and you realize your life isn't even half over. That you've just begun to make a living with your spouse.

And it makes you feel young again.

Charlie is over her bought of nausea brought on by the latest round of chemo, and is her happy smiley self again. And she is getting dangerous.



Just yesterday Kevin came up the stairs after putting her in her swing, and found her hunched over to her right reaching for the floor. And a few days before that, she started unhooking the front tray and lifting it up, or using it to sit herself up. She is becoming quite the little escape artist.

This morning while I waited for the school bus, Charlotte was in the house watching sesame street. Something about Cookie Monster makes her lift her feet in the air... So I say, "Coooookie cookie cookie!". And she grins at me and kicks her feet. What's a little humiliation compared to movement of her lower extremities, anyway?




The next round of chemo is the day after Labor Day, September 8th. Saturday is Lance's first birthday, and then we plan on going to Cassville to hopefully enjoy some warm weather on the Mississippi River.

I am still waiting on pictures from North Dakota, and as soon as I have them, they will be up.

For now, here are some pictures of Bekah and Charlie in their Dance for Cancer tutu's, a new line I am thinking about starting.






And also, a mysterious t-shirt that arrived in the mail for Charlie yesterday- I'm not sure who it is from, and my assumption turned out to be wrong. So whoever it is, I wish you would come forward because it got quite a few laughs last night and I wish I could thank you properly.

I will update again soon!

God bless.

Kristi Rufener

Saturday, August 22, 2009

Another Day, Another Chemo

I have been neglecting my blog lately, and it's been weighing on me. Imagine that! Feeling guilty about not updating my blog!

A LOT has happened in the past week.

The weekend before her third round of chemotherapy, Kev and I took the girls to Day at the Drags (rain date) to photograph racing vehicles. The girls had a blast, and we were able to raise $660 for a fifty-fifty raffle. So we ended up with $330 for Charlotte. Here is my cousin Tim advertising the raffle:



We checked in for our third round of chemo last Monday, and were told by Dr. Catrine that Charlotte would, in fact, have eight rounds of chemo EVEN if her scans came up clean after the 6th round. Dr. Catrine said it wasn't worth the risk to do less than eight because of the possibility of the cancer recurring. So we had to sign the paper that gave her permission to do so. Also, we were informed that Charlotte had to start GCSF shots to boost her white cells (the infection fighting cells your bone marrow produces) because of the way her chemotherapy has been making her levels tank. This particular thing I was definitely less excited about. Needles give me the heebie jeebies...

We had just signed our papers and settled in when Sandy Bakk came in and asked our permission to have someone come in and photograph Charlie for A Sister's Love. A Sister's Love was a blanket project started by a little girl named Allie who's sister Emma has cancer. Allie is eleven years old and makes blankets to hand out to other children going through cancer. The purpose of photographing Charlotte was to put the pictures of Allie and Charlie up on UW's website telling about what Allie does. Charlotte immediately took a shine to Allie (she seems to LOVE anyone under the age of fifteen, I personally think it's their voices), and interacted with her fabulously for the camera crew. Pretty soon though I started to feel bad for Allie, because the photographer immediately started honing in on our baby's "beautiful eyes", and asking if he could just get a couple of close up shots of her. Poor Allie was left standing in the corner watching. Luckily, she didn't seem to mind.

So here is a picture of Charlie with Allie's blanket:



After that was all done, they finally started her on her chemo around seven o'clock, and that baby was miserable. This chemo was really rough on her. She immediately stopped eating, and didn't start again until we were discharged. They finally dosed her with Benadryl after she was awake two hours past her bedtime, and she slept soundly all night.

While she was sleeping, we were getting schooled on GCSF. I was waaaaaaay too intimidated (see needle phobia), so Kevin took over. First we started injecting oranges, THEN our nurse stepped up and said, "Now try it on me!". I thought she was crazy, but Kevin jumped right in.




Even with all the chemo being pumped into her (and despite the fact that this chemo was rougher on her than her previous ones) we still had our famously happy baby to contend with, and of course everyone that knew her stopped by to see.




When she WAS uncomfortable, however, the nurse would come in and give her a bath in the special pediatric sink in our bathroom. Charlotte LOVED it! She would kick one leg up over the sink and leave it propped there. That always seemed to calm her down.




Even though we seemed to have a hard time with this round of chemo, one thing that really touched me was Dr. Catrine. When she visited Charlotte, good ol' Charlie put on a show for her with her legs. Kicking them all over the place, and propping herself up on her tummy and looking around. Dr. Catrine teared up and couldn't stop saying how wonderful it was to see Charlotte's improvement. Certainly beyond all of our expectations. I really do believe this kid is destined for greatness!

Lastly, right before we left the hospital, Flashes of Hope called us down to take pictures of our family. Lauren and Rod just happened to be at the hospital with Lance, who got a clean bill of health at his MRI (that's RIGHT!! NO MORE CANCER!! GO BOY!!), and since they pretty much feel like family, I invited them to join us in the photos. We got a few of just Charlie and Lance (which was SOOO adorable!). Lauren suggested we prop them up on their tummy's so that they would push up and look at the camera, but as soon as Lance saw Charlotte laying by him, he just tipped over and laid his sweet little head on her and smiled. No amount of re propping helped either- he would glance over and just lay right back on her! SOOOO precious!

I will share those pictures with you as soon as I have them, though I will warn you to expect to wait at least 6 weeks before we get them.

Next round of chemo is the day after labor day.

As always, thanks to EVERYONE who has been with us every step of the way, and to everyone who hears our story and takes the time to pray or email us. It means the world to hear from you all!

God bless.

Kristi Rufener

Friday, August 14, 2009

Just An Unordinary Day

As most of my blog followers know, tomorrow is our rain date for Day at the Drags.

Because Charlotte's levels have FINALLY rebounded, it was decided we should bring her with. And it's making me sick with worry.

It does seem sort of sad to feel this way, but I am utterly co-dependent on our hospital, and we are going out of state. Two and a half hours away. Kevin doesn't think anything will happen, and to be honest neither do I, but the thought still lingers in your mind...what if?

Cancer seems to be full of what-ifs... something you go through your entire life trying to ignore. But in this instance, it turns out to be something you can't simply drown out with practicalities, probably because as far as Neuroblastoma goes there actually AREN'T any practicalities. It's a disease with a personality and agenda of it's own. It almost feels like it's own entity.

Like, Hi, nice to meet you, here is my daughter Charlotte, and by the way, here is her cancer, Neuroblastoma; and please don't mention chemo because that REALLY pisses it off, and I'm not in the mood for a fever spike. Thanks, appreciate it.

Something amazing happened today that renews my faith in the human race as a whole.

For as many times as you hear in the news about suicide bombings and mother's leaving their babies in dumpsters, when a story comes along like this it is almost unbelievable.

We had someone from our human resourses department come visit this week from North Dakota. Her name is Sheila Marquart, and she visited with me and I gave her the jist of our story. Turns out she has been reading my blog, so she had a pretty good idea of what was going on already, but she requested some bracelets for the staff in ND. So I sent her a bag of 48. (And made a mental note to tone down the language when necessary).

This morning when I got to work, this was in my inbox:


Hi Kristi ~ I want you to be aware that the following email was sent to all of our North Dakota staff today!



Best wishes to you and your family! You are in my thoughts and prayers daily!! Take Care!!



-Sheila Marquart






--------------------------------------------------------------------------------

From: T
Sent: Thursday, August 13, 2009 3:15 PM
To: &All North Dakota
Subject: Kristi Rufener



With Kristi’s permission, I’d like to share the following –



Some of you may know that Kristi Rufener, Lead Teller in our Madison bank, and her husband, Kevin welcomed a new baby girl, Charlotte to their family earlier this year. Baby Charlotte was also welcomed home by her big sister, Rebekah. Little Charlotte is 6 months and two days old today. What you may not know is that at the age of 4 months, Charlotte was diagnosed with a Neuroblastoma in her chest.



Neuroblastoma is an aggressive solid tumor cancer that strikes mainly young children and has less than a 30% chance of survival when evidence at diagnosis shows that the disease has spread. Neuroblastoma is the most common cancer found in infants, almost double that of leukemia, and the most common solid tumor cancer in children, second only to brain tumors. Neuroblastoma is the third most prevalent pediatric cancer and has less than a 30% chance of survival when evidence at diagnoses shows that the disease has spread. There is no known cause or cure for Neuroblastoma.



Charlotte is currently undergoing treatment - and in an effort to offset the medical expenses, Kristi is selling “Cure Charlotte” bracelets for $5 each. A supply of the bracelets is located in the HR department. If interested, please contact Tania Christian at taniac@starionfinancial.com to purchase/donate today. Thank you!


--------------------------------------------------------------------------------

Below is an excerpt from Kristi’s blog which chronicles their efforts for Miss Charlotte.



Tuesday, August 11, 2009



Charlotte was in for an MRI last Friday, in which she had to be put completely under.

I asked about sedating her instead, but it sounded like even under sedation babies can move or snore and screw up the picture. Snoring screwing up an MRI- can you believe it??

So they put her under, and Kevin and I wandered aimlessly around the hospital for two hour while we waited for her to go to recovery. They had to put a breathing tube in, so we had a hoarse baby for a few days as well. Every time she coughed it sounded like she had croup.

And then Kevin and I waited anxiously the rest of the day for the results…

…I had literally just got done telling Alex that I was expected an important phone call with the MRI results when my phone rang.

It was doctor Catrine.

"Hello! How are you? I have Charlotte's results!"

"Wow, you sound cheery!"

"I do? It must be because I actually got some sleep last night."

"Ha, that would do it..."

She went on to explain that her and the radiologist compared Charlie's scans, and that the tumor had shrunk- get this- over thirty percent!

I could have cried in relief, except for what she said after that.

"She IS going to have to have eight cycles of the chemo instead of four, and unfortunately, her blood levels aren't high enough for her next round that we had scheduled this Monday."

Eight cycles of chemo- that takes us straight to the holidays and snow plowing season.

Eight cycles of chemo- that means Happy First CANCER Christmas, babe.

Eight cycles of chemo- no day care, no playing with other kids, no cute little fuzzy hair to put bows in for a year...



-T



And I was in tears. THEN I got this email:

Kristi: We’ve sold out the supply of bracelets Sheila brought back with her! Do you have more we can sell? If so, just send them via Starion Financial mail to me here in Bismarck.



My thoughts and prayers are with Charlotte, and your entire family…


-T

All 48 of them already!! It's only been a day! Can you believe it??

I can't describe what it is like to work at a job where you are essentially just another family member, and everyone pulls together to do what they have to do for you.

I asked Renee today what she thought I should do- and she said just say thanks. That's all you can do.

So it would seem that I am going to be thanking people until I am blue in the face, and still feel indebted.

But thanks, just the same!

Chemo on Monday- three cycle. Expect updates from the hospital as needed. She gets her stitches out for her Hickman, and then no more dressing changes! YAY! *Insert sigh of relief here*

On a HUGE side note- Charlie has finally regained enough strength to start propping herself up on her elbows again. So I will leave you with pictures of her doing that.







Have a great weekend, and God bless!

Kristi Rufener

Tuesday, August 11, 2009

Cancer Is...

It's another one of those bad luck, good luck posts...



Charlotte was in for an MRI last Friday, in which she had to be put completely under.

I asked about sedating her instead, but it sounded like even under sedation babies can move or snore and screw up the picture. Snoring screwing up an MRI- can you believe it??

So they put her under, and Kevin and I wandered aimlessly around the hospital for two hour while we waited for her to go to recovery. They had to put a breathing tube in, so we had a hoarse baby for a few days as well. Every time she coughed it sounded like she had croup.

And then Kevin and I waited anxiously the rest of the day for the results.

Here is the thing about cancer- tumors, more specifically:

You try REALLY hard not to get your hopes up. You tell yourself over and over again that yes, she is moving her legs now, but maybe that was just the steroids, and really, she has only had two rounds of chemo so far, so how much could the tumor REALLY have shrunk?

But even though you are trying desperately to convince yourself otherwise, there is this itty bitty voice in the back of your mind spouting off otherwise.

It says, "You dummy, you KNOW chemo is working, this is what it's designed for, this is what the oncologists told you would happen, this is the type of cancer she has, it literally melts away, you KNOW you are going to see results..." and so forth and so on.

We got home and I rushed to work, being already an hour late because apparently when you sedate an infant for an MRI, a two hour process turns into a SIX hour process.

I had literally just got done telling Alex that I was expected an important phone call with the MRI results when my phone rang.

It was doctor Catrine.

"Hello! How are you? I have Charlotte's results!"

"Wow, you sound cheery!"

"I do? It must be because I actually got some sleep last night."

"Ha, that would do it..."

She went on to explain that her and the radiologist compared Charlie's scans, and that the tumor had shrunk- get this- over thirty percent!

I could have cried in relief, except for what she said after that.

"She IS going to have to have eight cycles of the chemo instead of four, and unfortunately, her blood levels aren't high enough for her next round that we had scheduled this Monday."

Eight cycles of chemo- that takes us straight to the holidays and snow plowing season.

Eight cycles of chemo- that means Happy First CANCER Christmas, babe.

Eight cycles of chemo- no day care, no playing with other kids, no cute little fuzzy hair to put bows in for a year...




And don't get me wrong- I was ECSTATIC to hear about the results of her MRI... But WHY oh why does good news ALWAYS have to be clouded over with bad news?

Couldn't we just get a "Yes, the chemo is doing it's job," and just leave it at that?

Cancer is bipolar. Cancer is a psycho PMSing woman with a loaded hand gun and box of chocolates.




Cancer is waiting in line at the midnight showing of a movie you have been waiting a year to see, only to get to the ticket counter and have it be sold out.

Cancer is our life now.

Because I am not superwoman- I am only the girl in line in front of you at the grocery store that you get frustrated with because I am taking too much time trying to decide if cereal is more important, or bread is more important because I can't afford both.

Because even though we have a fantastic support system, we are still just trying to hold it together sometimes.

Because maybe you CAN go home and hug your wife or husband, and just be content, instead of being overshadowed with fear and desperation.

Because it happened to me- it happened to US- and all I can do is "keep on keeping on".



So, chemo NEXT Monday (the seventeenth), at AFCH with all of our favorite nurses.

We will talk about GKS shots (oh God, my skin is crawling just thinking about injecting my own baby every day), we will talk about the Birth to Three program and if Charlie qualifies, and we will talk about what life is going to mean to us for the next five cycles of chemo.

And then we will go home. And I will lay down with my husband at night, and we will know that despite everything else going on around us, we are still doing the right thing.




Cancer is forgetting your brand new Nike's, but still running the marathon.

Cancer is.

God bless!


Kristi Rufener

Tuesday, August 4, 2009

Don't Breathe On The Baby!!

The last few days have been pretty uneventful (thank God!).

Last night, Charlotte had a crash course in supper time etiquette with a six year old... I say Charlotte got schooled because, well, there really is no teaching a six year old anything when she thinks she knows it all!

Amazingly enough, she managed to do a pretty impressive job, only spilling a few drops of apricot mixed fruit on the tray, as you can tell by the picture.




After supper, we went for a "stroll" to the park, and Bekah pushed Charlie most of the way there. Mom had to help when we started either A. steering for the grass, or B., steering for the middle of the road. Unfortunately, the pleasantness of going to the park is always overshadowed by the need to keep Charlie untouchable, and therefore confined to her stroller with the mosquito netting secured over it.




I feel like we have a big red sign plastered to the front of it that says, "Chemo Baby: You Can Look, But Please Don't Touch!".

Here is a special spot for a GREAT NEWS insert, however!

Behind in her development?? Not by much! Lookout world! Here comes Charlie!




That's right! No doctored photo there! That is MY baby girl sitting up UNASSISTED!!!

For a while, Kev and I had joked about not having to worry about her crawling as soon as other babies, and therefore not having to worry about babyproofing for a while...

Yes, well, she kind of shot that idea out of the window.

The only thing we have to work on is her lower and upper body strength, especially now that she is gaining movement back in her legs.

It would seem that she is a tad *ahem* heavier than she was the last time she could use them- so that seems to be our biggest obstacle at the moment.

Speaking of obstacles- I have my first cold since Charlotte has been on chemo, and that is making life more interesting than I would like. As crazy as I was about washing before, you can multiply that by, oh let's say a hundred or so, and you would be touching the tip of the iceberg. And since I was coughing a little last night, I put on one of our convenient face masks to extra protect her from my germs.



Boy, did that ever warrant a perplexed face that is going to go down in the history books...

God bless!

Kristi Rufener

Monday, August 3, 2009

What Goes Up...

I'm sure I referenced in my last post about how those "happy feelings" never stick around while chemo is going on. That being said, I certainly jinxed myself.

I think every parent hopes that their child will be the exception to chemo- that they won't need transfusions, won't get sick, etc. etc. I mean, I know I was hoping that.

What've you got for us, Johnny?

So they screwed up her labs on Thursday, apparently the blood draw clotted so they couldn't get an accurate CBC panel. Fine. Whatever. This stuff happens.

Lisa calls and says Tammy will come out in the morning and redraw her labs and JUST IN CASE she needs a transfusion, well heck, she will throw in a "reservation" for that too at the day clinic.

I'm way more cocky than I should be at this point because we have been doing so well, so I'm like, "Yeah, sure, whatever you need to do."

Thursday turns into Friday, Tammy calls me at work to let me know she is on her way to draw labs for Charlotte, I putz around for the rest of the day anxiously awaiting results.

And it's twelve, then one, and I still haven't heard anything so I sort of forget about it. Decide to hit up a garage sale that was advertised on Craigslist, which was a major disappointment... Sorry to get a little off topic here, but I absolutely LOATHE garage sales that have baby items for more than a buck a piece. Garage sales are NOT to profit off of, they are to clean out the house.

So I leave with two items, having spent three dollars and fifty cents, and head to BP on Whalen road to fill up the car. Gas card doesn't work, but I swipe it twice just in case it was a moment of machine retardedness, throw my hands up in an annoyed gesture, fill up the car and go inside to have the cashier run the card.

On the way out the door I am making a mental note to check out another garage sale Whitney told me about that is by my parents house, and the phone rings. It's Lisa Keller. Here to change my plans.

"So we got Charlotte's blood results back, and her white count is so low they aren't even giving us a number, meaning she has ONE floating around in there somewhere," I chuckle, in spite of myself.

"Her hemoglobin is at 8.4, so she is fine there. However-" Oh, crap. "Her platelets are too low, so she WILL need to come in to day treatment to get a transfusion."

"A transfusion?"

"A transfusion."

"Right now?"

"Right now."

"So, we need to come up to the hospital RIGHT NOW for a transfusion..."

I can sort of picture her rolling her eyes and wondering what planet I am on right now, even though that isn't Lisa Keller's way.

"Right. You need to be up her before three," I glance at the clock in my car and its almost two o'clock, and I'm still ten minutes from home, the hospital another thirty to fourty depending on traffic.

"Okay Lisa, we will make it work."

"That's what I want to hear! See you soon."

I hang up and immediately dial Mom. Give her the gist of it, and they have Charlie ready to go when I get there.

En route to AFCH, I am munching on tuna casserole and being annoying to my husband who is already annoyed due to road construction on Midvale boulevard, and people that can't seem to drive their tiny cars in their own lane.

We get to day treatment, get checked in, and argue with a couple of nurses who want to give her oral meds.

Because my daughter is stubborn like her father- trying to give her any kind of medicine is like trying to force feed Kevin vegetables. She gags, and spits it out, and the nurse STILL has me try three more times, to no avail of course.

We give up, and get to the transfusion.

I notice with mild amusement that platelets are the color of orange soda- and then come to the startling realization that because of THAT observation, I will probably never be able to drink orange soda again.

Charlotte lays in bed quietly, watching her Sunkist infusion go through her lines, and then finally conking out for the duration of her platelets.




Kevin and I kill time watching Becker.

Everything goes according to plan, and we head out around six, and the rest of the night is uneventful.

Fast forward to Saturday morning...

I am up at seven getting ready for work, and am almost ready to walk out the door when I notice Charlotte's left eye is red, watery, and almost swelled shut.

The next hour was a scramble of finding someone to work for me, and getting packed up to go up to the ER.

We left the Bean at home, and she ended up spending ALL day Saturday with Aunt Sue at Olbrich Garden's Butterfly Exhibit, and then the beach in Verona. Needless to say, she didn't miss us much!

After three hours at the ER, and a diagnosis of conjunctivitis (pink eye), we got her some eye drops and got to come home.



Now we are playing the waiting game- waiting for her pink eye to go away, waiting for her counts to go up, and living our life in seclusion until then.

It's sort of an "I wish it was five months ago" day today.

Also, to add insult to injury, Kev and I handed the keys to our landlord last night, and when I asked about our security deposit I was told we would have to wait until he could "check out the situation" since WE called the health department and all. He HAS to give us our security deposit back, I'm not worried about that; he just didn't have to be an asshole about it.

Big shock.

I did manage to throw in that WE didn't damage the apartment at all, and WE really need the money.

And I'M not in the mood to play some stupid childish game about it, just because he is pouting about his mold problem.

I left it with me saying, "Well, we decided to move out instead of piss around with it."

Yes, I was irritated.

Now, take a deep breath, and move on.

Or, at least, when I get over this stupid cold and can breathe, THEN I will take a deep breath and get over it.

Kristi Rufener

Friday, July 31, 2009

In Mysterious Ways...

Just when you think you are at the lowest of lows and you can't see the silver lining in your clouds, something miraculous happens.

When you think of miracles, I'm sure you picture this absolutely breathtaking moment, complete with butterflies flitting around an open field of wildflowers, and the overwhelming sense of God's prescense.

Here is the truth to THAT myth-

I was standing in the kitchen yelling at my oldest daughter to for-chrissake-get-her-jammies-on, and I-won't-tell-you-again, and if-you-don't-hurry-up-I'm-going-to-put-them-on-you-and-that-will-really-piss-you-off, and making Charlie's four dose medicine bottle in the kitchen, with her dose of Gabepentin being dispensed, when Kevin yells at me from the living room.

"Hey, Kristi, you gotta come here and see this!"

I am rushing to get the correct dose of meds in her bottle, and at the moment had the Gabepentin upside down in my left hand and was pulling back on the teeny tiny syringe, concentrating.

"Just a minute, hon."

"No, RIGHT NOW!"

I sighed, exasperated, and went running into the living room, medicine bottle in hand.

"What?!" I demanded, frustrated.

And then it happened.

BAM! Miracle.

No singing birds, no ray of sunshine, just my husband and my baby, and her legs. Kicking!

video

Apparently, God didn't get the message about how miracles are supposed to happen.

Because there I was, speechless, about to drop a thirty dollar bottle of medication in an area littered with Charlie's latest drooly onsie, a dirty diaper, and a pair of latex-free gloves.

Some "novel" setting for something wondrous to happen.

My husband gently took the Gabepentin bottle from me, and went back into the kitchen to finish making her bottle while I stood there in awe, watching her flex her left leg up to her hip and then thrust it back down once, twice, three times. Then the right leg. Then both at the same time.

And the tears are welling in my eyes, and I can't stop them. The indescribable joy I felt at seeing those legs move is second only to the joy I experienced when she was born.

I rubbed my eyes and tickled a foot, just to be sure this moment was real- I had to feel her. And she grinned and flexed her toes, and pointed her foot just like a tiny ballerina. The whole while looking at me like, "What's the big deal, mom? I have this situation completely under control. You NEVER should have doubted me."

Kev finished up the bottle and crept up behind me, wrapping his arms around my waist and whispering in my ear. "I saw her do this already the other night, but I knew you wouldn't believe it until YOU saw it."

And it's this exact moment where all my doubts about being a parent and not being able to protect her have flown out the window.

For the first time I am starting to see C A N C E R as a blessing. Can you believe that?

When she was first diagnosed, it was horrific.

I will admit that Kevin and I even got to the point where you start to wonder if you would sacrifice your marriage for your children. And here is the answer to that- You Don't Have To.

You make it through the hard times, and you come out stronger. And you see this gift that God gave you, and you look at what you have overcome- Yes, even in a month's time- and you look at your husband and you fall in love with him all over again.

EVERY day.

I am happy to report that for the rest of that day, and every day since then, Charlie has been moving her legs more and more. Just yesterday I had her on the floor, and she was kicking them because the dogs were by her, and OH! how she LOVES puppies.



She was pulling Ellie's soft beagle ears, and running her hands over Logan's fur again and again. He liked it so much, he plopped down right on her head. Don't worry, she was overjoyed at the feeling of his silky Siberian Husky hair on her bald baby noggin.



The thing about Charlie moving her legs is that she also LOVES her feet.

Unfortunately she can't quite reach them to her face, so mom has to help. I happen to know first "hand" that those toes are DELICIOUS and keep telling her so in the hopes that she will want them bad enough to find out.



Grandma Shirley stopped by yesterday to take drop off Charlie's baptism gift (a beautiful Noah's Ark snow globe) and took Bekah with her when she left. When they came back (with Grandpa Doc in tow) Bekah's hair was four inches shorter- and UBER ADORABLE!

Here she is cheesing her new haircut:



I LOVE LOVE LOVE it! Now we don't have to worry about any more snarls! Why didn't I think of that?

Today is a good day. It probably won't stay that way (I don't expect it to, we are far from done with our journey), but I want these memories to stay etched in my head forever.

There is something about waking up every morning with the people you love the most.



God bless.

Kristi Rufener

Tuesday, July 28, 2009

Post 100

Frustration and aggravation.

Confusion, disillusion.

So, everything was going along smoothly, almost great. Kev and I got out and saw a movie on our anniversary. Went to Babies R Us and blew some money. Had a nice day by ourselves.

The apartment is almost finished- Kevin, his parents, and my mom have done most of the work admittedly, which I really appreciate as I did not feel well at all yesterday, and now mom and I are going over tonight to finish it up.

Charlie's latest round of chemo hasn't seemed to make her sick at all. Which is a blessing.

So it begs the question- what could possibly go wrong?

And as soon as it's out of your mouth, you slap yourself in the face, but it's too late, it eked out, and now you have to deal with the consequences.

Which brings me back to Chartwell- the people that apparently like to kick you when you are down.

If you remember my earlier post about the lovely people at Chartwell, our supplier for Charlie's line care, I had mentioned that they sent us the wrong Heparin flushes, ten times over her normal dose, and I barely caught it. Refresh your memory now?

Well, Tammy, our in home care nurse, stopped by yesterday to take Charlotte's CBC (blood draw) and casually mentioned to my father in law that Chartwell was refusing to send us supplies because of our insurance.

I had a little tussle with my insurance company a week ago because they had been claiming that they hadn't received my check- one phone call later and I was assured that everything was fine.

I figured Chartwell was whining because of this fluke, so I asked Tammy for their number and called them directly. Talked to some lady named Jane- a little off track here, I used to LOVE the name Jane...until now.

"My name is Kristi Rufener, I'm calling because I was told by our in home care nurse that there was a conflict with Charlotte's supplies?"

There was a long sigh on the other end of the phone.

"Kristi, I have went back and forth with you about this four or five times now-"

I interrupted her immediately.

"I think you are mistaken- no one from Chartwell has EVER called me about anything other than supply orders."

A pause.

"Well, then I have talked to your case worker about it four or five times. Anyway, we don't accept Benchmark insurance. It's really complicated."

Uh huh.

"Well I have a problem, Jane, because we are almost OUT of supplies, and Walgreens is telling us they won't cover us because it is Chartwell's responsibility to pick it up."

Another long sigh on her end. I must be royally screwing her perfect world.

"Kristi? I am going to have to call your caseworker in the morning. See, it's after five now and all the Dane county office's close at five, so I will call Joan in the morning."

"Joan? Who's Joan?"

"Joan, your caseworker..."

"Joan isn't my caseworker..."

I hear papers shuffling, another long sigh, the thought crosses my mind that if she keeps sighing like that she might just pass out on her stupid face.

"Okay, Kristi, who IS your caseworker?"

"Jen S*****, at the Stoughton Resources Building."

"I don't know any Jen. What's her number?"

I give her the number, noting that it is actually only ten to five and NOT after five like she claimed.

"Okay Kristi, do you have enough syringes to last through tomorrow?"

I nod my head and then say yes when it dawns on my that she can't see my face... which is probably a good thing at this point, because if looks could kill I would have fried this self righteous tart into a steaming pile of Jane. Believe it.

"Okay then, I am going to call your caseworker JEN in the morning, and see if we can get this sorted out."

I got off the phone then and sort of sat on the back porch staring off into space.

I was having another one of those moments where I wish I had the ability to plant my feet on the Earth and push off into flight. Usually, I only get about a foot off the ground before I realize all I've really done is jump, and then the neighbors are staring at me like I'm batty.

Time for my own heavy sigh, and I head back into the house where I am greeted with a howl from Charlie, who is sitting in her swing trying to chew her fingers off without teeth. I'm not sure she will be so successful in that endeavor, but boy is she trying.

Feed, change diaper, put her on the floor with one of her fifteen favorite blankie's, which she nuzzles contentedly, and finally falls asleep.

"What are we going to do now?"

It's not like the supplies are birth control and I can just abstain from sex- these are honest to god medical supplies for a cancer patient, and they are going to tell me that they don't take state health insurance?

The phone rings.

"Hey, Kristi! How's life treatin' ya?"

It's Lisa Keller. I smile easily. She does that to you.

"Hey Lisa. We are having a problem with Chartwell refusing us supplies due to insurance."

"Yeah, I heard."

"I'm just really beside myself- the lady was rude to me, and I can't imagine how they can refuse medical supplies to someone in need like that..."

"Well, you know, if it comes down to it we will just slip you a case from the hospital. I'm not going to let you guys run out. I will talk to Joyce in the morning and see what's going on. Give the lady a little slack, it IS the end of the work day."

"I guess..."

"Hey, I will call you in the morning and see how things are going and let you know what I find out."

If there is an angel on this Earth, it is Lisa Keller.

Kristi Rufener

Saturday, July 25, 2009

A "Standing" Ovation

I got a fantastic surprise this morning!

It was just the Charlie girl and me at seven a.m. today, so I scooped her smiling face out of her crib (she had been staring expectantly at me from her side of the room, just waiting) and took her downstairs to change her. I took her blue band off (a velcro band that keeps her legs together instead of in the "frog" position) and she stuck those bad boys straight out and raised her hands above her head in an exaggerated stretch.

Changed her diaper, sat her up (still smiling) and pulled her into a standing position. This. Was. HUGE! She hasn't used her legs since before she was officially diagnosed! Mind you, it was only for a few seconds, but HUGE!

She had been looking down at her feet, and as soon as she glanced up at me and grinned, it was all over. She tumbled back to her tush as though she had just realized what she did. A few seconds on feet that haven't been stood on since June 21st. I'm sure her muscles are weak due to not being used, so I was surprised she could stand at all.

Just thought I would share that with everyone, because it sure made my day start off great!

Our friends Sarah and Ryan are getting married today, the day before our first anniversary. The wedding is at two, and it should be wonderful. I will have pictures next blog I'm sure.

Not a lot to update on right this moment, but some important dates you should keep in mind:

August seventh she goes in for her progression MRI to see if her chemotherapy is working like it should. Keep your fingers crossed!

Also, August 10th-13th she will be at the American Family Children's hospital for inpatient chemo. Round three!

Here are some pictures I wanted to share as well:

This is Charlie and her moose- a nickname that at nineteen pounds she has rightfully earned.



And this is Charlie all tucked in bed with Mommy- she is what the nurses refer to as a "texture baby". She absolutely LOVES soft things- she loves to feel them and rub them on her face.



I know this update isn't so exciting for you as it is for me, but I wanted this date recorded as the first day she stood since C A N C E R.

Update again soon!

Kristi Rufener

Friday, July 24, 2009

Gimme a "C"

Cancer Statistics:
One in every 330 Americans will develop cancer by the age of 20.

On average 12,500 children and teens will be diagnosed with some form of
cancer each year in this country.

Of those, almost 3,000 will die.

In the U.S., about 46 children are diagnosed with cancer every weekday.

The incidence of childhood cancer has increased every year for the last 25
years.

This year 14,000 children will be diagnosed.

Although the 5 year survival rate is steadily increasing, one quarter of
children will die 5 years from the time of diagnosis.

Currently there is 30-40,000 children being treated with cancer. It strikes
children from all ethnic backgrounds and every level of financial income.

Cancer remains the number one disease killer of America's children - more
than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combinned.

Neuroblastoma

Neuroblastoma is the most common cancer found in infants, almost double that of
leukemia and the most common extra-cranial solid tumor found in children. There is
very little known about why neuroblastoma occurs, or about what factors increase
the risk for occurrence. It is an aggressive cancer of the sympathetic nervous
system, a nerve network throughout the body which carries messages from the
brain. Neuroblastoma is a malignant tumor that manifests as a lump or mass in the
abdomen, around the spinal cord, or in the chest, neck, or pelvis. Diagnosis can be
complicated. It has been called the “great masquerader” because its symptoms
mimic so many other diseases.

Every 16 hours a child with neuroblastoma dies.

There is no known cure.

The average age at diagnosis is two years old.

Nearly 70% of those children first diagnosed, have disease that has already
metastasized or spread to other parts of the body.

It accounts for 8% of all childhood cancer, but 15% of all the childhood cancer
deaths.

Nearly 70% of those children first diagnosed, have disease that has already
metastasized or spread to other parts of the body. The average age at
diagnosis is two years old.

Neuroblastoma is an aggressive solid tumor cancer that strikes mainly young
children and has less than a 30% chance of survival when evidence at
diagnosis shows that the disease has spread.1

Neuroblastoma is the most common cancer found in infants, almost double
that of leukemia, and the most common solid tumor cancer in children, second
only to brain tumors. Neuroblastoma is the third most prevalent pediatric
cancer and has less than a 30% chance of survival when evidence at
diagnoses shows that the disease has spread.

Through awareness and research, other forms of pediatric cancer have made great
strides in being able to claim 80% to 90% "cure" rates. Neuroblastoma cannot
make that claim. The complexity of the disease has baffled researchers for decades.
There is no known cause or cure for Neuroblastoma.

Shocking Facts about Cancer Research Funding

In the U.S. almost 3,000 children do not survive cancer each year.

Over the past two decades, only ONE new cancer drug has been approved
for pediatric use.

Only 3% of the National Cancer Institute Budget goes toward Pediatric
Cancer Research.

September is Pediatric Cancer Awareness Month, which nationally goes
unrecognized.

The federal government recently cut the budget for Childhood Cancer
Research.

Currently there are between 30 - 40,000 children undergoing cancer
treatment in the U.S.

Young patients often have a more advanced stage of cancer when first
diagnosed. Approximately 20% of adults with cancer show evidence the
disease has spread, yet almost 80% of children show that the cancer has
spread at diagnosis.

Today, up to 75% of the children with cancer can be cured, yet some forms of
childhood cancer have proven so resistant to treatment that, in spite of
research, a cure is illusive.

As a nation, we spend over $14 BILLION per year on the space program, but
only $35MILLION on Childhood Cancer Research each year.

There are 15 children diagnosed with cancer for every one child diagnosed
with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for
research per victim of pediatric AIDS and only $20,000 for each victim of
childhood cancer.

The largest children’s oncology group in North America which supports the
clinical and biological research at over 200 participating institutions and
treats about 90% of the children with received less than half of its requested
budget from the federal government this year.

The National Cancer Institute’s (NCI) federal budget for 2003 was $4.6
billion. Of that, breast cancer received 12%, prostate cancer received 7%,
and all 12 major groups of pediatric cancers combined received less than 3%.

Research funds are scarce as most money is diverted to well-publicized adult
forms of cancer, such as breast and prostate.

In 2005, the American Cancer Society provided only 2.5% of funded grants,
or 1.85% of dollars spent on research to pediatric cancer.

Neuroblastoma accounts for 7-10% of all childhood cancers and well over
15% of the deaths; and yet neuroblastoma is only designated to receive 5%
of the research dollars from a national pediatric cancer fundraising initiative

For every dollar received through federal grants and private donations by
this very organization less than $.03 goes towards funding neuroblastoma
research grants, awards, and fellowships.

Source www.curesearch.org

There are tons and tons of other organizations named in the honor of loved ones who
raise/support awareness towards childhood cancer. Research your organizations before
you donate. Whether it be for "courage" support or any other devastating illness, know
where your money goes. You can make a difference!
Cancer Facts
Copyright 2009. Isaac's Journey "where HOPE begins" Foundation. All Rights Reserved.

Thursday, July 23, 2009

Drugs...

Got this in an email and had to share...

Wednesday, July 22, 2009

Adrift

Home again, home again, jiggidy jig.

The funny thing about getting home (after you have been in the hospital for chemo, and picked up all six of her refills) is you are suddenly EXHAUSTED. Even so, you often stare at the side of your dresser while your husband sleeps. It's sort of funny how trivial a thing like sleep is to me at this moment, however; I don't care much if I am not sleeping as much as I am letting on. I SHOULD call my doctor and tell him the sleep medication isn't working, but I can't bring myself to care enough about it. So I just continue the insomnia cycle, and let my mind wander, which is always a dangerous thing.

Kathy and I briefly talked about holidays this year, because it is going to be complicated. Everyone is so optimistic that she won't need more than four cycles of chemo, and for the life of me I just can't get on the same page. I WANT so BADLY to be like everyone else that is so strong through all this- I WANT to say, OH, I'm sure she WILL walk and use her legs, or OH, I'm so sure she will be the baby that beats the odds and only needs four cycles of chemo, and LOOK! we are already half done... But it is SO HARD when you look at her and her legs just lay there, not being kicked around carefree like other babies. And hard to think we will need only four cycles of chemo when the tumor is so big, and we constantly worry about her catching some kind of illness. Which brings us to the holidays- and everyone will tell me how far away Thanksgiving and Christmas are, but you have to see it from my point of view...

I have NEVER missed going out to the farm even before I had kids, and it kills me to think we can't celebrate Christmas as a family because Charlie can't be around everyone with her counts so low. What kind of first Christmas is THAT for a baby?? Even if we had people come visit US, it's just not the same...

Kev and I were chatting about her prognosis last night, and it got me to thinking that we have never really ASKED that question... Kevin says, "All they keep telling us is that she is doing really well...".

Well, pardon my french, what the hell does that mean, really? She's doing well for cancer? She's doing well for chemo? She is doing well because she is still breathing and smiling?

I want a straight answer about MY CHILD. And we can't get one. No, really. All we ever hear is, "Well, we will have to monitor her progress, and see how she does." What is THAT? This is a human baby, OUR human baby, we are talking about. Not a car, not a newspaper column. I don't want to sit around and wait for the reviews to come in to see if a movie bombed at box office. I want to know if she is going to LIVE, and if things will go back to NORMAL. Will I ever have a toddler that is running around getting into stuff with her big sister?? Or do we need to mentally prep ourselves for a wheelchair? I know what you are thinking... You are thinking, as long as she beats this cancer, what else can you ask for?

I have a newsflash for you. I am EXTREMELY selfish about my children. It's not going to be GOOD ENOUGH for me if she gets better. I WANT her to be able to do everything she wants to do. I WANT her to grow up, get married, have babies, and be able to look through these pictures and hospital bracelets, and baby hats and blankets and say, "Hey, I was SICK. And I BEAT that. And look where I am NOW!".

We got denied for SSI. It was like a slap in the face. I have a baby who qualifies as a paraplegic, but couldn't get government assistance because Kevin and I make too much money.

Two questions about that- one, it's not ME applying for benefits, it's my five month old, so PLEASE tell me why income factors into that?? How can you possibly make TOO MUCH money for your LEGS to be worthless? Hey, you don't REALLY need your legs, they make WHEELCHAIRS, so the government is going to stiff you.

Other question- WHO CAN LIVE ON UNDER $2400 A MONTH???

According to Joyce, our caseworker, the government hasn't updated the cutoff since the 70's, so if you make more than $900 a month, you make too much.

Well, THANK YOU VERY MUCH USA GOVERNMENT. My faith is renewed in the United States once again.

No, we don't need the income from Social Security to get by, but I think that Charlotte is ENTITLED to that money because of everything she is going through, and it should have been put in a savings account for her for medical expenses and school when she gets old enough.

Joyce was going to look into it, but I'm not holding out any hope. If your own government would come to you in your time of need, you realize pretty quickly that the only people you can really rely on are yourselves.

Speaking of Joyce, she stopped by to help me fill out grant papers yesterday, and commented on the hat Charlie was wearing. Apparently, she had picked it out- even though Lisa Keller had given it to us earlier in the day and told us SHE had picked it out. We called her out on it at rounds- it was hilarious! Her and Joyce were laughing about it. Here is a picture of Charlie with the Joyce/Lisa hat:



The story is that when Joyce saw it, she immediately thought of Charlotte and nabbed it. Charlie is really popular at the hospital now- our nurse Kali even stopped in on her day off to see her. Words cannot express the happiness the nursing staff has brought us in the special care they give our daughter. And Charlie LOVES the attention... She just wouldn't be a Rufener/Christen if she didn't!

We also had Joyce stop by during Charlie's Hickman surgery to give us a pink crocheted blanket donated by Hunter's family. Hunter is a little boy (12 months old) who also went through Neuroblastoma, but is now in remission. I got to meet him and his mom Kristine while Hunter was here for his six month scan. The blanket is beautiful, and we send well wishes and hope for his continued remission. I also sent Joyce this picture of Charlie with the blankie per Kristine's request. Joyce had said that that's what Kristine had wanted in return for the blanket, but because of privacy rules she wasn't technically allowed to request that... Well, of COURSE Kevin and I were 100% okay with getting a picture to her. It's the least we could do!




So thanks yet again to everyone on staff at the American Family Children's Hospital for Monday and Tuesday- for making us feel like we are at home even though we were half an hour away, and for helping us to cope every day with the hardest decisions ANY parent will EVER have to make.

And thanks to our families, who keep in touch and remind Kevin and I to take a break for ourselves once in a while (Kathy).

We love all of you, and vow to repay the kindness that has been shown to us.

Kristi Rufener