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.


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