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

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






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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!


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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

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

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

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