Hospital Day 6

It was an absolutely fantastic day today. One I think was due to us. Charlotte was all smiles and giggles.

Lisa Keller stopped by today to give us a run down on all of the things we will have to be careful of upon our discharge. One of the things that was an absolute no-no was mold. And I froze.

"You mean as in she can't be exposed to it at all."

She shook her head vehemently. Absolutely NO MOLD.

Well, crapola. Our apartment is 3/4 drywall, 1/4 mold. Last time they changed our siding, it rained and leaked into the entire west side of our apartment, and BAM! Mold.

So I guess a call to the landlord is in order, and a temporary stay at my parents house until we figure out what's going on.

Tonight Kali is showing us the ins and outs of flushing Charlie's PICC line, and the changing of the dressing, which I referred to Joan at the Belleville Clinic...she just doesn't know it yet. That part makes Kevin and I nervous, so we are trying to avoid it as much as possible. Still learning it though, just in case.

I realized today that I probably hurt some feelings two posts ago, and I think I need to address it here.

My post on Sunday was a totally irrational post. Something I thought maybe my readers would have recognized when they read through it, and something I addressed on yesterdays post.

I was completely out of my mind- something that comes and goes in the hospital. We have REALLY good days, and we have REALLY bad moments. Moments that make you doubt yourself as a parent, and moments that you start thinking must be someone else's life because you can't really fathom how you arrived at this point in the first place.

It is really hard for me to word the way I feel sometimes without hurting feelings, but I didn't want to change anything I had written so that when I looked back at this blog a year from now, I could sort of laugh about how I felt at that moment and think something like, wow, I can't believe I felt that way, it really wasn't that bad.

So I would like to issue a heartfelt apology to my husbands mother, because no, of COURSE I don't really feel like that about you. I plead a moment of temporary insanity that was so insane my own husband booted me out of the hospital room.

We cannot get through this without the support of our families, both who have been so fantastic up to now. And I thank Kevin's parents especially, for the home cooked meal and for coming up to hold a baby who's personality was unrecognizable for a few days, but really just needed the stability of her family.

We should be out of here in a few days, Thursday is starting to look like the magic day; where we are leaving the stability and comfort of this hospital that has been our home, and the staff who has done something for our child that has essentially saved her life...and while I am not sure I am ready to venture out into this new journey, we really don't have a choice.

What we do have, however, is the most fabulous support system one could ever dream of. Prayers and emails from as far as England now; new friends and stories to carry with us, and obstacles that neither Kev nor I could fathom overcoming that we can now put behind us.

Now is the time to move on and reclaim our life. On to having floors so clean you can eat off of them, and bottles of Purell stashed all over the house.

It might never go back to normal-

But it will go back to "us".

God bless.

Kristi Rufener

Meet Lance....

Hospital day 6-

Charlie was feeling a LOT better this morning, and when we made it to rounds I asked for her leads to be taken off. And they were. And I was rewarded with a smiley baby who got to sit in a swing most of the day. Which is her favorite thing ever.

And honestly, a smile from her was like HEAVEN compared to last night, which I was starting to think would never end. It ended up being that her Zofran (for nausea) was discontinued. I'm not exactly sure why, but I wasn't happy when I found out. We had a pretty miserable baby until she finally crashed from exhaustion at two in the morning. And I would like my faithful readers to know that the comment I made about Kevin's parents was half made out of frustration and pure tiredness. You should know that I love them very much, and that this has been an extremely tough time for everyone that has been involved.

So a woman named Sandy stopped by today, and she is in charge of the parent meeting that takes place every Sunday. She wanted to tell us about a family who had come to the hospital today who was in a similar situation as us, and was here for their last round of chemotherapy. I was very interested to meet them, and she told us she would talk to them. She then left, and I didn't hear from her for the rest of the afternoon. Just as I was starting to think that maybe this family didn't want to speak to us, there was a knock on our door. Kevin, being the funny guy that he is, knocked back thinking it was one of our nurses. Of course it ended up being a young lady named Lauren, who wanted to tell us about her son named Lance.

It ended up being a really humbling experience.

Lance is a nine month old chubby happy boy, who has (drumroll please) a neuroblastoma. In his chest. On the left side. That invaded his spinal cord. Starting to sound familiar? The more she talked, the more we related. She is twenty two years old, but she sounds ancient when she talks about her sons cancer. Charlotte and Lance were diagnosed about the same age, and they lay in the same position, which Lauren and I both dubbed the "frog pose". However, unlike Charlotte, Lance was not diagnosed right away. He was a very sick little boy for the two weeks it took to get a definitive diagnosis. They had told Lauren that he had pneumonia, due to the tumor showing up as white space in his lung. He got to the point that he was on a ventillator, and even had a trach for a while.





You would not even know he is the same baby who almost died six months ago.

I cannot wait to see Charlotte as happy as he is.

Bekah also made a friend here named Clare. She is a vibrant six year old with a cute bald head and tiny glasses who smiles shyly every time I see her.

It has been so fascinating to me that some of the sickest kids I have met seem the fullest of life.

Kevin and I have plans in the works for bracelets to benefit Charlie. More info on that later.

Overall I would call today a good day on the rollercoaster ride that is cancer.

I'm not going to say that my mood is going to stay this way, but its days like this that make me realize that yes, maybe we CAN get through this...

Until next blog,

Kristi Rufener

Hospital Day 5

I really REALLY thought it was going to start getting easier. And it almost seemed to. Until today.

Because today the chemo is starting to make her sick. She spits up a lot, and she poops- and I know what you are thinking. You're thinking big deal, that's what babies do. Well, picture what you think babies normally do, and multiply that by about a hundred, and you will be touching the tip of today's iceberg.

Kevin's parents brought Bekah up today, and she spent a better part of the afternoon on the computer playing games while we volleyed between rocking Charlotte, walking Charlotte, and feeding Charlotte; who has suddenly become a bottomless pit. When we brought her in, she was eating a solid 30 ounces a day. Now, because of the steroids, she is up to 70 ounces a day. That is more than the recommended eight glasses of water for the average adult.

I am starting to feel incompetent. I have the mom guilt- like I failed to protect her, but there is something more sinister creeping up on me and I don't like the way it is making me feel. Kevin's mom (God bless her, I know she means well and she is lost like we are right now) is starting to take over. It feels like she is directing the show, and her wanting to be here for rounds in the morning is making me a little bit uncomfortable. And then I feel horrible that I even have those thoughts, because I know she is doing the best she can.

She made us food tonight, and I realized this afternoon that Kev and I have only been eating once a day. So I heated up the roast she made, and while we were eating it, Charlie had another sick episode that woke her out of a dead sleep, and the food was forgotten about.

She was so uncomfortable that she started moaning- a low, relentless noise that dug into the core of my soul and ripped my heart out of my chest. I cried to Kevin to make him do something, anything, to get her to stop making that awful noise. What could I do?? Nothing. Tylenol, morphine, she gets it and it just comes back when it starts to wear off.

Now she is finally sleeping, for how long is anyones guess at this point. Its like Kev and I are on autopilot, and it feels like we have been in this hospital for years.

I really hate that I can't sound upbeat about anything right now, but this is a hospital FULL of sick kids. I met Claire tonight, who was sitting on her dads lap watching the fireworks. She has cancer- she has been through surgery, chemo, radiation, and lost one of her kidneys... And the worst part is I look at this little girl and think, could that be us in five years?

Being on autopilot makes it extremely difficult to pick up anything the doctors and nurses are really telling you, which wasn't helpful when Nurse Lisa introduced us to Chester today. Chester is a rightfully named dummy, who has a pic line and a port, and is used to demonstrate the flushing of the lines that we will have to take care of when we are home. I have a feeling we will be getting acquainted with Chester over the next couple of days, as this is something we will have to do with Charlie when we take her home.

So without further ado, I give you Nurse Lisa and Chester, the chest dummy.



And I bid you all good night; and lets cross our fingers that tomorrow dad can still get her to smile, no matter how uncomfortable she is.

And of course, as always, thank you for your prayers and thoughts. The only peace I have right now is the knowledge that so many of you (even people who have only heard of us from friends) are keeping us in mind. We are NEVER too busy to thank each and every one of you.

God bless.

Kristi Rufener

Hospital Day 4

Today was okay.
Charlotte seems to be getting more and more uncomfortable each day, though whether that is from the medication or just being in the hospital is anyones guess about now.
Being here is a catch 22 sometimes... you get in good spirits and almost forget you are in a hospital... until you round a corner and there is a child pushing an IV pole with a bare head.
We had Charlie baptized in the Chapel downstairs, and her God parents were Rachel, Michael, Jenny, and Nick. It was absolutely beautiful. Everything went off without a hitch. We had nurse Lisa with us, who was able to give Charlie some morphine (she gets really uncomfortable when she is handled a lot) and then was able to disconnect her leads long enough to get her in her dress and run through the service. Charlie looked like any other normal plump pretty baby in her gown, and I will have pictures up soon.
In fact, everything went so well that Father Klink commented.
"She is a REALLY good baby! Is she this good ALL the time?"
And a small voice immediately piped up in the back row, "NO."
You can just about guess who that was.
Aimee and her sister Caitie stopped up and it was nice to have a bit of normalcy in the craziness that has become our life. We laughed for a while, and were able to just be ourselves, instead of ourselves plus a baby with cancer.
Charlie is slowing going global- I got an email from my aunt today who passed the word about Charlotte's cancer on to her friend Patti, who passed it on to one of her friends. We have people praying for us literally all over the country.
It is times like this that make you realize the power of the human spirit.
It is only unfortunate that it is realized during a crisis.
I am exhausted, as it seems nights are the hardest for Kevin and I.
After everyone leaves and the lights are out, we are faced with the awesome weight of this cancer on our shoulders. We have talked about so many what ifs, and so many coulda woulda shoulda's, that we are slowly running ourselves ragged.
And yet, in the midst of this internal struggle amongst ourselves, we are slowly emerging stronger and stronger.
This horrible thing that happened to our family is bringing us together until we are essentially one person with one heart and one goal.
Just to fight back the chance to be a normal family again.
God bless you all, and I will update soon.

In My World

Joyce finally snagged us this afternoon. She has been trying to connect with us since we got here. And right away she gave us the face.

That I'm so sorry you are going through this it must be awful how sad your baby is so young face.

That's the face we have gotten from EVERYONE here...and I HATE THE FACE.

It makes me feel like they are thinking all of that and just a little of this:

I'm secretly glad its you going through this and not me.

Isn't it horrible that I think like that?

So anyway, Joyce rounded Kevin and I up, and took us to the family counseling room. She asked what brought us here and I told her the whole story including my car dying the day before. Because basically I was going for the whole "Kristi's Life Is a Literal Shit storm" angle.

And she slaps down some pamphlets in front of us and starts going over them. And in less than five minutes I am completely overwhelmed.

They are grants we can apply for that will reimburse us for medical expenses. And she is explaining the different types, and I am getting a little teary eyed because, hey, this is Kristi. I never ask for handouts, even when I really need them, and here they are being pushed in front of me. I am just barely holding on when she puts a particularly colorful one in front of me. On the cover is a picture of a plump, laughing child, and there is a shooting star in the left top corner.

"This," Joyce says quietly. "Is the Make a Wish Foundation."

She goes on to explain that when Charlotte is two and a half, she will get the chance to fulfill a wish- for instance, Disney world, with her whole family. Just because she is sick with a life threatening disease. And I am all wrapped up in the whole spiel when suddenly it hits me like a ton of bricks-
The reason this is all so appealing is because MY daughter has CANCER.
She IS SICK.
And everything from the past two days is slamming into me at once, and I feel like I am sort of slipping into this catatonic state, and when I come out of it, Joyce is directing us back to our room and Kevin is saying WOW over and over.
We just get settled in and my phone rings. It's Patrick checking in. Co-worker Patrick. My favorite Peter's on the planet Patrick.
"I have some news for you."
And Kristi, the sarcastic bitch that she is even now in the face of a CRISIS (That was a Joyce word, crisis) spouts out:
"I'm not fired, am I?"
And Patrick laughs and says,
"No no no. Actually, I wanted to let you know that we are using your PTO, and when that runs out Bill got you approved for forty more paid hours of leave. And in the event you have to be out longer than that, he MIGHT be able to get you more."
And I am speechless. Who's supervisors do that?? Who goes out on a limb like that? I thank him the best I can with tears running down my face, even though I want to say more all I can get out is how much it means to me, and that they have already done enough, and Kevin and I are so grateful. And I am figuring out that grateful is a very under appreciated word.
And then my mom calls, and I tell her and she chokes up and tells me that Brandon Hendrickson and my dad are actually putting together a benefit ride in our honor.
I can honestly say that in all my time on the planet this is not the path I would have chosen for my family, but now that we are here I am SO grateful (see, there is that word again) that we have the friends and family that we do.
They are here, all around us, in our time of need, in my world.
And even if there isn't a God, or a Heaven, I have NEVER felt more surrounded by angels than I do now.

Thank you to EVERYONE who is following our story, who has said a prayer, made a phone call, even just took ONE SECOND to think about us this day, because I can assure you it makes a difference.

Bless you all.

Behind Bars

I haven't brushed my hair in two days.

My coffee sits untouched on an adjustable bedside table beside a Vogue magazine and a pink stuffed elephant that says Lil' Peanut.

Today started as a good day.

I was in high spirits, having decided I could be one of those other moms on this floor that was along behind her kid as he scoots down the hall on a foot powered bike. She smiles, even though he is wearing a mask to protect him from infection while he is on chemo.

I can do that, right? That's easy enough.

I feel like I have been inducted into some strange cancer society where you learn words like Zofran, (an anti-nausea medication), or platelets (her white cell count, which is going to drop in the next few days and we will have to limit her visitors so she doesn't catch something she can't fight off).

So back to me starting my morning in the right direction- I had decided we should get Charlie out of her "sick room" and out for a walk. And I thought maybe we could walk to the cafeteria in the other hospital (they are all connected here). And the nurse says she doesn't think that will be a problem. So she comes back immediately with a nice stroller, and I am bouncing Charlie on my knees and talking about going for a walk.

Then her nurse comes in and says she is more than happy to let us walk up and down the hallway, but we can't leave this floor. I ask why, and she says because of the extensive monitoring she is on. In case her breathing changes, blah blah blah. I don't hear much of it to be honest.

She leaves me with a lump in my throat. We are prisoners in this hospital.

My husband gently offers to put her in the stroller and walk with me, but I forget myself and snap at him.

"I have NO DESIRE to walk the fucking fifteen feet of this floor!"

And I put Charlie back in bed.

Because that's what we do here. Everything is in cycles now. This is her Dex cycle, this is her sleep cycle, this is her feeding cycle. You are either holding her, or rolling her a towel to train her legs to be back in their normal position.

You are either talking to doctors who's names you can NEVER remember, or you are sitting around waiting.

You family and friends remind you to eat, and everything tastes the same.

You forget you have another child, and the guilt that she has slipped your mind consumes you, until you realize that in THAT guilt you forgot the one that is in the hospital right now, and then THAT guilt consumes you.

11:45 today- she drinks her contrast solution, and they cath her.
2:45 today- she has a bone density scan.

She has to have morphine before I can pick her up.

Her stomach protrudes where the tumor is pressing- and my God, how come I NEVER noticed it before???

Sun up- sun down- She will lose her hair. Her feet are tight like she has rubber bands around her legs, and I am fascinated by the perfect imprint my thumb leaves on her leg.

We ask questions that I can't remember in five minutes, I accidentally fall asleep and no one wakes me when the doctors come by.

I am livid the rest of the day and force myself to stay awake because I know no one will wake me if they come by again.

Cycles.

This is the lunch cycle where all of the parents on this floor line up for free food from the Ronald McDonald house.

This is rounds- where all the doctors stop outside your door and talk about your child like you aren't standing right there in front of them. Like she just a number in the statistics of cases they get a year.

500.

The number of cases that are diagnosed nation wide every year. That's how rare this cancer is.

And then the oncologists who come by to tell me the rare side effects of chemo- how it can cause blood pressure dips, how it can cause another cancer, but not to worry because these are just the RARE side effects...

But...wait...

Isn't her cancer rare too?

Then telling me the side effects are rare really doesn't make me feel any better.

Eat, sleep, cancer.

And this is our life right now, in this hospital prison, on makeshift beds, in our makeshift world.

A Long Night

Kevin and I are here at the hospital.

Charlotte has a Neuroblastoma in her chest, and I have tranquilizers.

The blastoma is about the size of a fist, and it is pushing on her spinal cord which is causing the paraplegia in her legs. It is also resting against her heart, but luckily that isn't causing any problems. I will have pictures to put up on here as soon as I get them, but for now the crappy description I just gave will have to be good enough.

This is a cancer that is highly treatable, according to the four hundred and fifty doctors we have seen so far, none of them whose names I can remember. She started chemo at two a.m. this morning.

We are poisoning our baby to get her better.

I cannot describe to you the feeling of hearing your four month old has cancer.

There is a little bit of guilt- like I should have been home instead of going back to work. There is anger, and it is often misdirected. Right now it is my rage against God for doing this to a baby. And don't try to tell me there is some big plan for her, because you can kiss my ass and she could have done great things without cancer.

Then there is helplessness. I have no choice BUT to poison her with this chemo in the hopes that she will get better.
There is the sense of loss- that she is losing the chance to be a baby before she barely even began.
I am alone. And yet not alone. My husband is here. My mom is here. And I am alone.

And when you are alone, the things that go through your head are horrible.
Did I do something to make her deserve this? Why isn't it me?? I could have handled it if it were me.

And...what if she never walks? Or uses her legs?
What if after all this is done she isn't the same baby?

Just a week ago she was so healthy and normal.

I brought a healthy happy baby into this hospital, and they gave me a sick one.
They gave me this baby with cancer who is hooked up to all kinds of IV's and monitors.

And her legs flop around. I call her froggy, because that is what it reminds me of.

And despite everything else around her...

Froggy is still smiling.