Trick or treat

Is Julia the cutest ballerina, or what? You could probably never tell by these pictures that this sweet girl in her pretty pink tutu was a holy terror when it was time to go trick or treating...

That's right. Julia laid down screaming in the street.

We went trick or treating at Landon's house because our neighborhood is kind of dull on Halloween. Thankfully, my friend Suzanne has a wagon and her husband Jamie pulled Julia for most of the route...

Landon, who was dressed as a boxer (it's hard to tell in this pic because he wanted no part of his robe or gloves.... these toddlers, I tell ya), was all into collecting his candy. He even asked for some for Julia. How sweet is that? Of course, he would eat it as soon as he got back in the wagon, but that's ok since Julia won't get near the stuff. Don't know where she gets that!

Rejected, part 2

So the pharmaceutical company thinks a couple of journalists make too much money to get any help with the chemo our "benefits" won't pay for...
Did I mention that the infusion and the oral medication cost $24,000 for a month's worth of treatment? Sure, we've got that laying around.

We were going to just outright buy the pills ourselves, but Mike's doctor says they really need to work in conjunction with the infusion chemo. And no way can we pay for that at $11,000 a pop.

But we're not giving up. I will not let this go and I have become shameless in my pursuit. I sent a sappy, begging, pleading letter to a VP in our company, who oversees employee benefits. I did everything but send her pictures of my child. She actually wrote back and said she would look into it. The HR person at our paper is now involved too. She says the prescription service rejected the medication because they can't find any link between these drugs and Mike's cancer. So we're trying to get Mike's doctor to send us his research and hopefully re-submit the claim. I also called our insurance company -- different from the prescription service -- and they have a process where claims for rejected medication can be submitted to them. So that is under way as well.

So we've got some balls in the air. And we're waiting to hear from the doctor's office in Tennessee to see when we can get an appointment.

It's been really frustrating, but through the insanity, we've been reminded what good friends we have and that we aren't in this alone. We appreciate all your offers and tips and phone calls and everyone working all their contacts to see if they can get something to shake out. We had to turn down one friend's offer to sell his dog's kidney... but we're truly grateful for everything.

Rejected

The appeal to our employer and its prescription service for Mike's chemo was rejected...
I can't really say I'm surprised. They took no time in ruling either (we found out Thursday but I didn't want to ruin Julia's birthday post with ugly news) which makes me wonder if it was even really re-evaluated.

I could go on and on about how furious I am and how I feel like if we worked for a different company Mike might get a fighting chance, and how helpless and angry I feel, but I'm sure you can imagine.
So the doctor's office is now making a request to the drugmaker itself. No clue on how long this might take. It's now been a month since Mike has had any chemo...

We are also considering just outright purchasing the drug. Two cycles would cost $2,000 but we sort of feel like we need to take every shot we've got. Mike would get a CT scan after the two cycles and if it's not working, at least we would know. And if it is, perhaps we could make a new request for coverage. We're just trying to weigh all the options.

The wheels also are in motion for us to see a specialist in carcinoma of unknown primary. His name is Dr. Anthony Greco and he is at the Sarah Cannon Cancer Center in Nashville. He is THE top doctor for this kind of cancer. When Mike was first diagnosed, I read every possible thing I could on this disease, and Dr. Greco's name kept popping up over and over again. He's done numerous studies and has had a lot of success and breakthroughs. Then, the doctor we saw at the Moffitt Cancer Center recommended him and when I read his bio and saw that he went to college and med school at WVU, my heart skipped a little beat. Maybe it's a sign. Who knows.

Anyway, he will see Mike but we have to have our doctor here make the arrangements. It could be months before we get it, but we're excited to get things going.

Birthday bash

As promised, lots of pictures from Julia's Elmo party...

She had so much fun running around with all her little friends. She wasn't keen on having Happy Birthday sung to her and wanted no part of her adorable (ifI do say so myself...) Elmo cupcakes, but other than that, it was a good time. And my goodness, this girl got sooo many nice gifts. We're working on some Elmo thank-you's right now.

We almost had to cancel the party though. Julia was running a pretty high fever Saturday. Motrin brought it down and it wasn't too bad Sunday, so we went ahead with the festivities. It came back Monday morning, so we went to the doctor. Little did we know, we would end up there three days in a row.

Turns out a fever with no other symptoms is cause for alarm in little ones, but the doctors couldn't figure it out. They tested for strep, took blood to see if it was an infection, but nothing. They told us to give it another day and come back if it hadn't gone down. Back we went on Tuesday. They decided to give us an antibiotic to see if that would do the trick.

The next day, the fever was gone but the poor girl was covered in a rash. They wanted to see her yet again. I swear, she'll never get in the car with me again. She was not happy, to say the least. Anyway, it turns out she has roseola, a common childhood virus, a fever for a few days followed by a rash. She's covered in pink polka dots, but she'll be fine.

I swear, nothing is ever simple around here, is it?

Big mess

Here it is, almost a week after Mike's doctor wanted him to start taking a new chemo... and we can't seem to get our hands on it.

We've been stuck in a maze of red tape the past several days. Try to see if you can make any sense of it:

First, we were told we couldn't get the prescription filled at Walgreen's, we had to go through the prescription service our company uses. They said they needed a "prior authorization" from the doctor. Sounds simple, right? Wrong. Doctor's office said they sent it. Prescription place said they didn't. So it went back and forth like that for a few days. Finally it gets in the right hands. Then we learn a "nurse" needed to review it. At 6:15 p.m. on Friday, I get a phone call that it's been denied. The lady said the insurance company rejected it, that they would talk to the doctor's office Monday morning to see what to do next.

Great news to get at 6:15 on a Friday, when we are powerless to do anything...

So I call the insurance company this morning to find out why this is happening. They have no clue what I'm talking about, they don't have anything to do with prescription medication, they say.

Back to the prescription service. A guy there tells me they've already sent paperwork for an appeal to the doctor, they're just waiting for a response. He tells me it could take 30 days. He tells me the info was sent to someone named Kit. There is no Kit at the doctor's office. He tells me there is. He tells me it was our employer that denied the request...

We call the doctor's office. They have no clue Mike hadn't been able to get the meds and know nothing about an appeal. They confirm there is no Kit.

Back to the prescription service. I finally get someone who puts me on hold while they call Dr. Neel's nurse. The proper paperwork is finally sent. Neel's nurse called me back later to tell me an emergency appeal was filed, basically the doctor saying this drug is a medical necessity. It will take 72 hours for a decision.

I realize this is long and rambly and makes no sense but that's what's been going on. I truly can't believe this is happening. It is beyond my comprehension that someone at an insurance company or our employer or the prescription service (I still really don't know who made the decision) can decide they know better than Mike's doctor what to do. And if we are going through this madness to get a prescription filled, I'm sure it will be a blast trying to get approval for the $11,000 chemo.

Oh, and through all this, we had Julia's Elmo party. It was quite fun and a good distraction. She was showered with so many gifts! Oh my goodness. I will post pictures of our festivities soon.

Birthday girl

I cannot believe my baby is two. It literally feels like just yesterday she was so tiny that holding her made me nervous because I thought I might break her. Now she's this giggly little girl who sings Twinkle Twinkle Little Star and loves to dance and jump and make messes and curl up on the couch for a story. How did this happen?

I'm still in amazement every day. I creep into her room at night and just watch her sleep (and make sure she's breathing, yes, I still do that) and my heart just explodes. I pinch myself because I can't believe she's mine. Despite everything that's going on around us right now, Mike and I feel blessed beyond measure.

Just wanted to share some pictures of Julia from the past year.

On to Plan C

It wasn't the news we were hoping for. There has been growth in two of the existing tumors. One was .6 centimenters and the other a little less than a centimeter. Still, it means the chemo wasn't working.

But Dr. Neel wants to try two new things. One is a chemo drug that is taken as a pill. It's used for head and neck cancers. The other is a new infusion chemo that is primarily used for breast cancer but is having success with other cancers. The reason Dr. Neel likes it so much is that it tends to be successful in cancers that have been resistant to traditional chemo. Sounds like what we need at this point.

But of course, nothing is ever simple with this stuff. The fancy new chemo costs $11,000 a dose. The doctor's office is working with our insurance company and the pharmaceutical company to see if they can get it approved. We may know something by the end of the week. He would probably start early next month.

In the meantime, he's supposed to be doing one cycle (two weeks on, one week off) of the pill chemo but we're having trouble getting the prescription filled. Turns out a one-week supply costs $500. We're trying to work with the mail-order pharmacy that our insurance uses. It will cost less that way, but he's supposed to start it tomorrow, and that doesn't seem likely now.

We were in good spirits with all of this until we started running into the insurance nonsense...

We were happy to hear that there was something new to try. My prayers this week were for hope. No matter what the scan showed, I just wanted to leave the doctor's office with some hope. And I feel like we got that. Dr. Neel told us that the cancer is not life-threatening at this point. But it's clearly growing and we need to find something to stop it.

Distractions

Mike had his CT scan Friday and we'll find out how it went on Tuesday morning. We've been trying to stay pretty busy so we're not constantly thinking about it. Not sure how well that is going...

We've been busy at work, taking care of this cutie:

baking these yummy pumpkin spice cookies with cinnamon icing:





reading this book a dozen times a day:





and assembling this for Julia's birthday:

And here's a little something from cancer world that really strikes me as odd. Cancer seems to have run amok in our newsroom. (and I just mean the newsroom of about 50 or so people, not advertising, classified, anywhere else in the building..)

Aside from Mike there are three other people who have recently been diagnosed. A few months before Mike, a co-worker was diagnosed with lymphoma. She essentially retired right after and I'm not sure of her prognosis. A month or so after Mike, another co-worker was diagnosed with lymphoma. We just found out last week that she is now cancer-free, so thank God for that. But also last week, we learned that a former co-worker, who spent about 20 years at the paper, has cancer.

I've heard from one person that it was lymphoma and from another it's leukemia. Either way, they're both classified as blood cancers, and Mike's initial diagnosis was also lymphoma.

It's probably coincidence, but it makes me shake my head. I mean, I've always felt that everytime I walked into that building, it was sucking out my soul, but now I have to wonder if it's also making us sick.

So I'm hoping I'll have good news to post tomorrow. I think we're a little more prepared this time than last. Last time, it never occured to me that the cancer could have actually gotten worse. This time, I think we're ready to hear whatever and know that if it's not something in our favor, we'll just move onto option 3.

Cute pics

Philip was sweet enough to send me some of the pics he took during their visit last week. Now I feel bad for making fun of him for being a "tourist" taking that camera everywhere... haha.

Thanks, P.

Still here

I know I've been neglectful of the blog when Stadelman is on my case. Geesh. And he's not even my boss anymore....

So what have we been up to? The Marambas were down for a visit last weekend. Kris and I managed to be in the same room during the presidential debate without a fist fight, so I'd say it was a good time. Julia seemed to think they were one entity: KrisandPhilip.

We had a lot of fun and plenty of wine. And Philip and I kicked butt in 80s Trivial Pursuit.

We also got new living room furniture. Finally. Actually we bought it several weeks ago, and I was hoping it would be here in time for Cherry fest, and it wasn't. Then I thought for sure it would be here for the Marambas. It came four days after they left. So we need some new guests to see our pretty new couch, etc.!

I can't believe I'm so excited over furniture but it finally feels like home to me now after living here two years. Before, we had my old loveseat from college that was totally out of style and a yellow couch that had seen better days. The coffee table was a hand-me down. Nothing matched. We're grown-ups now.

We're also planning an Elmo party. That's right. Julia is going to be two in a couple of weeks. We've got Elmo decorations out the wazoo...

Mike had a few tired days, but is doing well. He has a CT scan on the 10th and then we'll see Dr. Neel on the 14th to get the results. I can't even begin to describe the pins and needles we'll be on those four days. We really need to get some good news, to hear that this chemo is working. Please say some extra prayers.