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

Monday, July 20, 2009

Round Two- Come Out Swinging!

This last weekend was a busy one for the Rufener clan as a whole.

Kev, Whitney, Aimee and I spent most of the weekend moving out of our apartment. We got a fair amount done, too. But I am realizing how much crap you can accumulate in five years. It's almost embarrassing!

This is Aunt C- (Whitney) posing with Bekah and Charlie:


Saturday night, Whit an I stopped out at Sarah's bachelorette party. The whole group of girls were going up to the Dell's in a limo, but before they did they all got together at Ashley V's house to play some games and chat. Whit and I made it just in time for the games. One of them involved a toilet paper roll and a plunger. I'm not going to get into the logistics, but I suppose that you can kind of tell what was going on by this picture of Sarah and I.

Her wedding is this weekend- the 25th. The big joke is that Kevin and I can celebrate our first anniversary at their wedding, because it will be free dinner and dancing. Ha. We are so cheap...

My parent's recently took a trip out west, and got back last Friday. It seems like they had a good time. Which is a great thing, considering we seem to be taking over their house. So to stay on grandpa Mark's good side, I snuck a picture of Charlie in his green polka dot hat... Lots of stories there, even one involving a mule named Donk... And that's all I have to say about that.




My mom cut Kev's hair shorter today, and Charlie has been fascinated with it. It is so adorable to watch her run her hands over his head, and just smile in adoration. She REALLY loves her daddy...




She went in for surgery today to get her Hickman single-Lumen catheter put in, which is supposed to be a step up from her PICC line. This one protrudes from her chest instead of the crook of her arm, and has a wider tube so we don't have to be psychotically careful when flushing it. She will be receiving all of her chemo medication through this line from now on, as her PICC was removed during the surgery as well. Here is a picture of what her Hickman looks like, and it is a little intimidating due to it's placement, but I can assure you she hasn't acted like it is uncomfortable to her at all.




The dressing will need to be changed on it every three days for a month, and then it will be completely healed and can go without a dressing, which is exciting. Less of a risk of infection with this line.

We are in the hospital as I type this, about an hour away from her second dose of chemo. It's sort of ironic- this medicine we give her to save her life makes her sick. When she was first diagnosed almost a month ago, I didn't hesitate to say start her on the chemo, and now that I have had time to think about it and watch her get so sick and then get healthy again- my brain tortures me about giving her another dose. That's the funny thing about her cancer- she just seems so HEALTHY that you don't WANT to give her chemo, even though you KNOW the tumor is still there, and she REALLY isn't well...

I cannot WAIT for this crazy catch 22 to be over. You know you are doing the right thing, but it just makes you physically ill to be the one to make that call.

You can bet we will be throwing one helluva party when all this is done.

It is one chapter of my life I can't wait to end.

Kristi Rufener

Friday, July 17, 2009

Sorry, I Had A Bad Day Again..

So, here we are, home again!

Charlotte REALLY looks like a Buddha baby now! They shaved her head yesterday when I was at work. It was getting to the point that when you ran your fingers through it, it would come out in clumps... So sad.

Here is a before picture:



Here is her getting shaved:



Here is her after picture:





She is now fat AND shiny! Yes, I called my baby FAT. Eighteen pounds DOES qualify her for fat status.



I got an amazing email from Anna at Capital Candlelighter's today, informing us that she is sending us a grocery card and another gas card, which is so amazing I almost cried.

I also got an email from Ron about the wristbands we want to order for our benefit.

Here is what they look like, let me know which color YOU prefer, that would be extremely helpful....







I sat down and had a heart to heart with my boss today, and he told me straight up that he thinks I would be happier part time because of the way my life is going right now. I got all teary eyed when I told him that his family was like my family, and I really want him to know that no matter what EVER happens at this job, I am always going to feel that way about them. They are just terrific people!

I am feeling really emotional today, and its a roller coaster I would rather not be on.

Remember that comment I made about really good days, and then really bad days? Now they are reduced to almost moments instead.

Right now, right at this moment I am lost. Wandering. Like walking through the grocery store without a list, and not being able to remember if you were out of butter or milk.

I want SO BAD more than ANYTHING ELSE to have my life back the way it was four weeks ago. I would give up everything I have just for one more day when Charlie was kicking her legs around and standing; to be able to sit on MY favorite green chair, in MY apartment with MY family together, whole, unblemished, happy.

I want to be off autopilot and feel something beside loss- which is an all consuming black hole that sucks any happy thoughts right out of your mind.

Why am I mourning when no one is dead??

Am I mourning for what I had? It wasn't the material things that I am going to miss.

I look at my wedding ring, and I see the promise Kevin and I made, and I wonder if we will be able to hold it together when all we focus on lately is C A N C E R.

BIG FAT STUPID EFFING CANCER.

You ruined my life.

How dare you.

I WANT to say we will conquer this and come out stronger!

But I feel like I am the one with the tumor sucking out my very life source.

Food doesn't taste the same, the sun shining is too bright, the people that walk through the park laughing like everything is normal in the world- like they don't realize everything is completely upside down.

On June 24th, my world stopped turning.

When will it be back to normal for me?

God Bless.


Kristi M. Rufener

Wednesday, July 15, 2009

At The Hospital Again

We are back in the hospital, and its not for chemo.



When I got off work yesterday, Charlotte was fine. Happy and smiley. Hoppy Baby. (Something Bekah used to say when she was little.)




Kev and I met with the Birth to Three program, and had our first consultation where they referred us to the program. Everything went well, she scored off the chart for some things, and then of course her gross motor skills were zero since she can’t use her legs.

When we got done with the meeting (around three), Jim mentioned Charlie felt warm. So I scooped her up and took her temp. One hundred one point four. Shit.

Called Lisa Keller, Lisa said to bring her in immediately, so that’s what we did. Of course we didn’t have a hospital bag packed like we were supposed to, wishful thinking on my part I suppose since I didn’t think we would have to deal with something like this so soon. So Carla had to bring me up work clothes.

Then while we were waiting, a lab technician came in and drew her blood for cultures to make sure it’s not a blood infection. While he was doing that, Kevin, Lauren (Lance’s mom, Lance is back in the hospital for a blood infection) Laruen’s boyfriend (I am kicking myself because I can’t remember his name right now) and I all noticed that the lab tech reused her PICC line caps. I just about popped a blood vessel. He even reused the cap we originally had on her line from home.

Normally, I suppose the average person wouldn’t catch a SNAFU like that, but reusing caps was one of the FIRST things we had drilled into our heads. NO NO NO! Infection risk is so high that it’s completely asinine. And you would think a LAB TECHNICIAN would know better than that!

He left, and Kevin said really loudly, “I DON’T LIKE HIM.”

Which I’m sure he heard, and that’s just fine. Because then our nurse walked in.

“I don’t want him in here, EVER again.” I said that. And told her what happened. And she got wide eyed and changed Charlie’s whole safe site just to be careful.

And I tattled on him again this morning to Lisa Keller. Who immediately jotted his name on her clipboard and said heads are gonna roll. (Direct quote)

His name rhymes with Schmenny Poster.

So make sure YOU don’t get him either.

In other news, Charlie’s hair is falling out at an alarming rate. In honor of this, Kevin had his head shaved by my mom a week ago. Here is a picture of him getting it cut off.




This is the pile afterward.



And this is what he looks like now.



VERY handsome, if I do say so myself! He plans on going shorter, especially since it sounds like we will be getting her head shaved today so that I can keep some of the hair. Right now it is like kissing a shedding dog. Every time I smooch her head, I get a mouthful of fine little baby hairs. It’s so sad…

I sent out a Thank You to everyone in Middleton at my job that has been so helpful, and this is the reply I got from our president:

-----Original Message-----
From: Kristi Rufener
Sent: Monday, July 13, 2009 10:09 AM
To: Curt Walth; Craig Larson
Cc: &All Madison
Subject: Thanks
I just wanted to convey my thanks to everyone that has gone out of their way to help my family and me these past few weeks. Life has been pretty hectic to say the least, but you always need to take the time to thank the people that make it possible.

Words cannot express the relief I got when Bill called to let me know work was taken care of until I could get back. It meant SO much to me that everyone here at the Middleton location picked up my slack, and let me focus on my family.

I wanted to let you know that Charlotte is doing better than the doctors expected her to, and we go in for her next round of chemotherapy on July 20th. This is going to be a long journey that no one should ever have to take, but I feel so much more secure knowing I have people like you I can rely on.

Thanks will never be enough to express how I feel about this job and all of the people in it, but it's all I have to offer right now.

I will be sure to keep everyone updated on Charlotte's progress, and look forward to being back at work.

Thanks again!

Kristi M. Rufener
Lead Teller
Starion Financial



From Curt Walth:

Kristi, I am happy that you have some hope in this situation. We also appreciate the attitude of getting the job done by the staff while you are where you need to be at this time---with you daughter and husband. You and your family continue to be in my prayers. We just never know what the Lord has for us daily. Just remember, He only gives to us what we can handle even though we many times do not understand why. Keep up your spirits. Curt


I will update when I get to the hospital tonight.


Kristi Rufener

Monday, July 13, 2009

A Message From Gma and Gpa

This is a picture of our Granddaughter, Charlotte




She is 5 months old today; unfortunately, she is not here to celebrate with us today. Charlotte was diagnosed with Neuroblastoma, which is a rare cancer (only 500 cases in U.S. a year) that effects mostly young infants and children. She is doing well, and has completed her first round of chemo (Yes Chemo For a 5 month old). Charlotte is a real trooper and has been a very happy baby. When she has chemo, she looses her immunity at times, and is very susceptible to infection. For her own protection she has to stay away from crowds or any place she can come in contact with infections. Charlotte has blood draws twice a week to be tested, right now she is at a low point in her cycle and we need to protect her. She is home right now with her mom. We are very proud of Charlotte, and of course her Mom Kristi, and her Dad Kevin. They have been down a path in life that has changed, and will be changing their lives forever. There have been many prayers all over the U.S.A., Canada, and as far away as Europe for her and hopefully they will be answered. This is a very curable form of cancer and a prognosis looks good. She has a tumor about the size of your fist which is wrapped around her spine like little fingers and cannot be operated on. The tumor is putting pressure on her spine, and cutting off the use of her legs. Hopefully with chemo it will shrink the tumor and she will regain the use of her legs again. Luckily her parents were observant enough to catch it before it spread to the rest of her body and ended her life. This is one of the fastest growing cancers but the faster the growth, the faster it reacts to treatment, which is good. We have had a lot of encouragement with all the help from U.W. children’s hospital (they are great). They have a lot of great people and programs. Kevin and Kristi have had a lot go on in their lives this year. Kevin was the lead computer Technician at Circuit City for 5 years and of course when they went down in March, Kevin lost his job. And to top it off their apartment has mold which is a big enemy of Charlotte, they right now are living with Kristi’s parents till they can figure something out. Kristi is the lead teller at Starion bank in Middelton, the problem is she does not have very good insurance, so they were in trouble when Kevin lost his job. Kevin and Kristi were smart enough to get the kids insured. Kevin and Kristi also has a 6 year old daughter, her name is Bekah. Our prayers are going out to them everyday, and I would ask each and every one of you to put them in your prayers, it would mean the world to us.



Thanks Jim and Kathy Rufener

Tuesday, July 7, 2009

Video Test...

Here are some videos from this past weekend- One is Bekah driving a tractor, and one is Charlie trying to eat my Blackberry. Just wanted to see if they would work on here....
video
video

Good Luck, Bad Luck? Who Knows...

I don't think I have EVER been this organized in my life... In fact, I wish I had been more diligent about it in school!

Charlie has her medicine case.



It is a tub with a locking lid that has about six different meds in it, all for different things, all with their own syringes, and each medication with it's own packet of warnings and side effects.

Every time I open it, there is this little ping of responsibilty that sort of goes off in your head like a bell. This is important shit. Not just a "Hey, time to give the baby tylenol for a cold," crap. Its more of a "Holy cheeseballs, I hope I don't screw up any of these dosages and turn her into a drooling imbecile permanently...".

Lisa Keller called last night with some of the best news I have ever received in my life. It has only been topped by my finding out I was pregnant with Charlie. She told me that Charlotte is double MYC negative.

In idiots terms (as I like to refer to it) that means her cancer is highly treatable and she won't have to go through higher dosages of chemo. We have been waiting on those test results for almost two weeks now. She told me to act surprised when the oncologists called with that info. Funny enough, its been almost twenty four hours since Lisa called, and they still haven't tried to contact me.

We also got her blood draw results back:

Hemo 9.2 (she has to stay about 8 for the study she is a part of, and that is up from 8.9 when we left the hospital)

Neutophil 13 (that is not so good- typically, the average person is at 45-75, 10 is considered really low, and 5 is considered dangerously low, so for right now we are restricting visitors and she won't be leaving the house for fear she could catch something.)

I had a bit of a scare with our in home nurse people- they shipped her at home care supplies the Thursday we got home from the hospital, and when I checked the syringes I was a little thrown off... Her Heparin syringes they sent were at 100 ml per unit, and the ones we were flushing her PICC line with were 10 ml per unit... I called Lisa, and she immediately said NO NO NO, do NOT use those, use the 10 ml ones. Turns out Lisa is skeptical about using the 100 ml syringes because any excess could go into her bloodstream, so Chartwell (in home nurse people) had to be written up for sending us the wrong syringes.

Can you believe we have had to deal with that already?? That should clue you in a little as to how much my brain has changed. We went from normal baby to cancer baby in less than a week. You would be surprised how fast you adapt.

You would also be surprised at how tough you are.

I am once again reminded of one of my favorite chinese proverb type stories, and I would like to share it with you and then give you a take on our own...


There is a Chinese story of a farmer who used an old horse to till his fields. One day, the horse escaped into the hills and when the farmer's neighbors sympathized with the old man over his bad luck, the farmer replied, "Bad luck? Good luck? Who knows?" A week later, the horse returned with a herd of horses from the hills and this time the neighbors congratulated the farmer on his good luck. His reply was, "Good luck? Bad luck? Who knows?"

Then, when the farmer's son was attempting to tame one of the wild horses, he fell off its back and broke his leg. Everyone thought this very bad luck. Not the farmer, whose only reaction was, "Bad luck? Good luck? Who knows?"

Some weeks later, the army marched into the village and conscripted every able-bodied youth they found there. When they saw the farmer's son with his broken leg, they let him off. Now was that good luck or bad luck?

Who knows?

Everything that seems on the surface to be an evil may be a good in disguise. And everything that seems good on the surface may really be an evil. So we are wise when we leave it to God to decide what is good fortune and what misfortune, and thank him that all things turn out for good with those who love him.

-Author Unknown


Here is our story:

I found out I was pregnant at a time when Kevin and I weren't prepared for a baby. Good luck, bad luck? Who knows.

She was born while we were covered by health insurance right before Kevin lost his job. Good luck, bad luck? Who knows.

When Kevin lost his job, we managed to get the girls covered by state insurance, and got both of them on Physicians Plus HMO- the Tuesday BEFORE Charlie was diagnosed with cancer. Good luck, bad luck? Who knows.

The health insurance Charlie has covers everything 100%. Good luck, bad luck? Who knows.

She is considered a paraplegic right now because of the loss of function in her legs. Good luck, bad luck, who knows?

Because of her paraplegia, we MIGHT qualify for social security...

And so on.

Do you kind of see what I am talking about?? Even though bad things have been happening to us, it would seem that karma sends a good thing our way as well.

Right now we might be blind as to why this happened to OUR baby, but who knows what God could have in store for her down the road?

Maybe she will be able to contribute things to this study we signed up for that will help other babies like her.

Patrick okayed me off for this week yet, and I am still struggling with this internal war in my head. I felt so guilty going back to work after she was born, and then the cancer kind of validated my guilt, so I am struggling once again with getting back into the routine.

However, I then kick myself for NOT wanting to go back, essentially turning myself into a hypocrite when I spouted all that hoopla about wanting our life to go back to as normal as possible.

How do you move on from this mindset? Obvioulsy I didn't cause her sickness, I am smart enough to realize that, but you can't stop the guilt in your heart as a parent when you see your child sick with something you care helpless to combat.

Its like walking into a gunfight you knew was going to happen, but you still brought a knife.

This baby who has only been on this planet for 5 months has already brought us so much joy beyond belief, and at the same time an insurmountable grief, that you are experiencing feelings you have only heard authors attempt to describe in fictional novels.

While as human, we are aware that we thrive on the fortune OR misfortune of other human beings, when it happens at your own door you are ALWAYS ill prepared.

It is a slap in the face to know that when you think this sort of thing only happens to "other people", that essentially YOU ARE someone else to someone else.

My daughter is making me a different person. A better person, I like to think. A person that can be sympathetic to the type of pain other people experience as a parent.



Good luck, bad luck? Who knows.

Saturday, July 4, 2009

Homeward Bound

Yes, we are FINALLY home!

Sorry it's been a few days; but in my defence, it has been a daunting few consisting of diaper rash and juggling medications.

Here is a picture of dad driving us home from the hospital- yes, I know he is cheesy. He NEVER smiles nice for me.



So I am sure you are all dying to know who the infamous grandparents are that have done so much for my husband and I. And here they are:





This is Jim, Kevin's dad, one of the other loves of my life. He always gives me (and his granddaughters, of course) a reason to smile and laugh. I know he hates this picture, and I will probably catch hell for posting it, but I LOVE it because of what is going on. He is laughing because Charlie is grinning at him- and everytime he swooped his head down to munch on her belly, she laughed and tried to grab his hair.




This is Kathy, Kevin's mom, one of the mother hens in my life. She doesn't care who's kids are who's, they are ALL hers. She will do anything for any of her kids and grandkids, and being a grandma is one of the greatest joys in her life. This is a picture of her holding Charlie at my mom's today while they were babysitting.


So one of the main worries since we have been home is how to not have Bekah feel like she has been left out. This is especially hard because she is so intelligent. Right now she has been asking my mom or me to lay with her at night. This is hard for me for two reasons- one is because I don't want her to get into the habit of co-sleeping, and the other is I have just been SO exhausted since I have been home.

Luckily, for the fourth of July, her grandpa Mark has been spending time with her.

This is a picture of grandpa Mark letting her drive the tractor out at the farm for the hayride.



My husband also called me during that time to tell me she was busy steering them through the bean field and then the corn field. There is a video, and as soon as I figure out how to post that on my blog, it will be up!

Charlie has been doing extremely well. Now that we are home and flush her PICC by ourselves, it is really not a big deal. You are so scared in the hospital, but you don't have time to worry about getting it wrong at home. You just do it.

She still has poop issues, but we don't expect it to go away any time soon.

Now my focus (no matter how petty it seems) is her losing her hair. I will have to get a picture up of the hat I got for her. I am hoping it will replicated the texture of her hair because she LOVES to play with it, and it will break my heart if she reaches up to touch her hair and it is gone.

I was so excited to have a baby with so much hair (Bekah was born bald) that I have fixated on it.

Here is the funny news however; in honor of Charlotte losing her hair, Kevin is going to shave his head too!!

And yes...there will be pictures of that as well.

Happy fourth of July to all my readers and family and friends-

May this Independence Day be one step closer to us beating this disease that I refuse to let run our lives.



We are alive, and happy, and right NOW that's all that matters.


Kristi Rufener

Wednesday, July 1, 2009

Lucky Number Seven

This is our last night in the hospital.

It feels like we have been here for an eternity, but I am suddenly overwhelmed by the thought of leaving.

For the past week, we have had a nurse to call to cater to our every need- they have changed her, fed her, flushed her PICC line, reassured us every time we had a spazz moment...you name it. And suddenly we won't have that anymore. Its uber intimidating.

Today was a big day for us- Charlie had something called an MIBG scan. To break it down for you, she was injected with a radioactive isotope that makes her circulatory system and the Neuroblastoma cancer cells light up like a Christmas tree. This test (which is part of the nuclear medicine area in the main hospital) will tell us exactly where in her body the cancer has metasticized. We already know its on her liver, and hopefully we will find out that that's the only other place it is. We should hear by rounds tomorrow.



This is a picture of dad holding Charlie's puppy, Mister Floppy Ears (as named by nurse Amy today) while she is pappoosed in the MIBG machine.

Kevin's parents are coming by for rounds, and to get a run down of everything that is going to be involved in her coming home. I really hope it isn't as overwhelming for them as it was for us. To think that she can't do normal baby stuff... she can't be close to her other cousins for fear she could catch something. She can't go in a swimming pool. She can't be exposed to the direct sun. She can't do this- she can't do that. There is so much involved I don't know how we will keep track of it all.

Aimee came up to hold vigil with us tonight, and to tell me how far her prayer chain is reaching for Charlotte. She has been so wonderful to us- she brought me up an emergency kit that contained a People magazine, a Cosmo, and a sketch pad. Celebrities are always a good distraction to real life.



Right before she headed out, Nurse Kali (secretly one of our favorite nurses) came in to give us the run down on Chester.



This is my husband "man" handling the manequin...



This is Nurse Kali and Kev getting geared up to flush a fake PICC line.

After we had a practice run, I gave it a shot on Charlie's line. It went off without a hitch. I changed the whole safe site! (And TOTALLY just had to ask my husband what it was called again...hahaha!)

It really isn't as intimidating as it looks I guess. I was really scared to do it because there are so many things that can go wrong, but when you are actually attemping it, you don't think about what can go wrong, just about what you are supposed to be doing at the moment. Which is a good thing.

Charlie's next chemo cycle is set for July 20th, at which point she will get a special line called a Hycman. I'm actually not positive if thats the way it's spelled, but I'm not going to worry about it right now since she doesn't have one.

We are in high spirits tonight, and hopefully she won't need a blood transfusion before we leave tomorrow. Her hemoglobin (red cell count) was at 8.8 this morning, and because of the special Neuroblastoma study we signed her up for (where she will hopefully only need four cycles of chemo instead of 8-9) she has to stay at a hemo of 8 or higher. So if she has dropped by the morning, we might need to get her a transfusion before we leave.

No big deal though- I was assured that we would still be checking out, maybe just a few hours later.

I look forward to updating you tomorrow night when we are home and comfortable.

Hopefully this last picture can bring you as much comfort and joy as it did to me today.



And you can thank Kevin for it. He has a real talent for making the lady smile.

Good night, and God bless.

Kristi Rufener