Fighting the fight

18 Jul

I sit here, staring at the 6 baskets of folded laundry that is waiting for me to put away. I look at the article for work that I had planned to upload today, that I didn’t get to. My head hurts, my eyes are swollen and my mood is foul.  My body is heavy and my mind is full. Nothing more can enter in today.  Hoping that I can pull out the past 36 hours to free up some space. (I’m not the only one who literally feels like she has to arrange and rearrange what’s in her brain and literally pull out and let go of some things to make room for others, am I?) I am fully aware this will not interest you. It is purly out of need that I take it from my brain.

Yesterday morning Dave calls the insurance just to verify that we’re good with our treatment on Wed.  “We will not cover it,” they say.  “What WILL you cover?” he asks.  “We can not say.”

I call the doctors.  “They will not cover it.”  “We sent them a pre-approval form on the 9th. Let me check on it and call back.” she says.  An hour later, “We did not get the form back.  We called and are waiting to hear back, but why don’t you call, too.”

This is the part where you know it’s going down like a heavy anchor.

Direct quotes here, “It looks like this morning your husband was told no. Today your doctors office was told no 4 times and now we’re telling you no. I’m not sure what else I can tell you.”

Enter: crying mom and the stupid “C” word. “You probably don’t realize that my daughter has cancer all over her body and this is saving her from having to be chiseled apart bit by bit.” I say.  “If your baby has cancer, there are many treatment options.” she says.  “NO! There is not! Not for a 5 year old with hundreds of moles. Maybe for a person with one or two.  THIS is the treatment option!”

She goes on (and on and on and on…with a few more on’s.  It was forever, this call.) to tell me that I should quickly call my doctor to see if they could bill under any other code.  There is 10 minutes left in the day and thankfully we connected, I got 2 more codes and I call back. No dice. Not going to happen. Appeals take 30-45 days.

{A side note, our amazing derm who pegged Cora’s diagnosis in 30 seconds of meeting her took this big-wig job at a big CA University hospital. This is her ONLY day she can do Cora’s procedure.  She wanted to be sure to do the 1st one so that the next person could follow her notes. Appeals aren’t helpful.}

This morning, the nurse went to bat for us again and wound up having this last line to the man on the phone before she hung up on him: “Sir, do you have kids?”  “No I do not, ma’am.”  “I can tell.” Click. Whoa. These people are on our side. Loving that.

Going back and forth and winding up with our Derm’s cell phone direct line, we decided that after she talked to them, they were a maybe for coverage.  We are moving forward and doing the procedure.  She is writing an in-depth appeal letter before she leaves just in case.

End of stresser #1.

We hopped over to Cora’s pediatrician for her 3 month home visit where she got one shot and 3 vials of blood drawn and did not shed a single tear.  I used to celebrate when L and M didn’t cry but with Cora, I just wish she would cry.  “She’s so good!” they say.  Yet in my head I’m thinking, “She probably never got the attention from crying at any point of her past medical care. Why start crying now.”  I just wish she’d cry. “I’ve never seen a child sit so still and be so good! You’re so lucky, mom!” *sigh*

End of stresser #2

Then, at lunch time the anestetheogist called me to talk about the sedation and inform me that I will not be able to go back with her while she is put under. Hmmm….how do you think I felt about that?  I took a deep breath and told him all of the reasons that wouldn’t work for me, how I was well-versed in watching all 3 of my children be put under and that I wouldn’t pass out. She needed me, this wasn’t a typical situation and asked him to please reconsider.  He told me it wasn’t his call and he’d have someone call me.  “Good luck in convincing her though, cause it’s not going to be easy.”  “Challenge accepted.”  I said.

And then she called.  And I did all of the same with her, praying she was a mother who understood a little bit where I was coming from.  “I’d love to help, but the anestetheologist has specific rules and won’t bend for this one.”

HA! Caught someone in a lie, but which one? She said she would talk and one of them would call me back.  Of course they did not.  I will put on my mama lion hat again tomorrow, but I’m expecting to lose the battle. Pray, please.

End of what I can do about stresser #3

When I got off the phone with her, I wanted to make sure that I had Cora’s other appointment tomorrow straight.  You see, Cora has to get to the hospital at 7:30 to get something painted on her skin which will allow the cancer cells only to be treated by the laser. It has to sit for hours before the procedure.  BUT she also has a opthamology appointment tomorrow that was unable to be moved. It was originally at 10:20, but with the laser treatment needing to be put in there, the two schedulers talked privately.  The derm scheduler said, “They said just come over from the 7:30 appt and they will work you in.”

I was feeling like I needed a little clarification on that one, so I called this afternoon and was told, no, it was not verified, and that they could make no promises that she will get in early. But we can’t wait until 10:20 because we need to be back at the surgery center at 12:00. It is a 3 hr appointment.

Miss Rude on the phone said, “Ma’am, we can’t promise and when your dermatologist squeezes you in an opthamology appointment, you can’t expect that we will rearrange other people’s schedule so you can make it to a DERM procedure They need to be flexible, here.”

I’ll give you one guess how, after 2 days of battles over my daughter’s treatment, I handled the remark of irritation that we could be asking to sneek in early for a simple DERM procedure. Seriously, I can still here her say it with this dismissal note in her voice.

I filled her ear with what the procedure was and what it wasn’t and how we needed to be sure we could do the eye appointment before we came there.  She filled my ear on how she didn’t want to get in the middle of any conversation that was had without her and she didn’t know a thing and we’d see how it goes in the morning.

It was at this point when my head started pounding and I reveled in the amount of battling I had done in the past 2 days. And I know it’s just the beginning of my battling. And that exhausts me.

And so tomorrow we will leave the house by 6:45 and won’t likely return until dinner time.  Thankful for my dad who has to wake up at 4:00am to come help us with the big boys. I never was able to get any crafty activities to do while Cora has to stay in from the sun. Or food, really.  So many things I had planned for the last 2 days, but it was spent with papers of notes, pencils, phone in hand and mind full. So, we’ll figure it out, I guess.

And now, I will tumble into bed grateful that my mind is a little less full.  And grateful for Karen W. who reminded me of this verse when I ask, “Why?”

As Jesus went on His way, He saw a man who had been born blind. His followers asked Him, “Teacher, whose sin made this man to be born blind? Was it the sin of this man or the sin of his parents?” Jesus answered, “The sin of this man or the sin of his parents did not make him to be born blind. He was born blind so the work of God would be seen in him. John 9:1-3


8 Responses to “Fighting the fight”

  1. Wendiplus6 July 18, 2012 at 3:22 am #

    Praying…relentlessly praying!!!!!!

  2. Alison July 18, 2012 at 4:30 am #

    Reblogged this on Traveling at the speed of life and commented:
    Please pray for my friend Jen, and her darling daughter Cora. Cora joined her family the same day that Paige joined ours. She has hit a few bumps in the road, and I ask that you keep them in your thoughts and prayers in the days, weeks, and months ahead.

  3. amy July 18, 2012 at 12:52 pm #

    Thinking of you and your sweet Cora. There are soooo many people supporting you, wanting to fight with you, and cheering you on (((HUGS)))))

  4. Lisa Schubring July 18, 2012 at 1:21 pm #

    My heart aches for you and Cora! Praying that it will all go well today and that the people in charge of making good decisions, do indeed do that. Praying that God moves in their hearts.

  5. yzhart July 18, 2012 at 1:43 pm #

    That verse you cited is a great one. It reminds me of Luke 18:27. Hope you find some encouragement in the knowledge that He is all-loving and sovereign. 1 Peter 5:7 says, “Cast all your anxiety on Him because He cares for you.” Praying for you and your family.

  6. Andrea July 18, 2012 at 2:47 pm #

    I found you from Paige’s moms website. I’ll keep you in my prayers as you get through the days ahead. You’ve had amazing courage and love to get you this far, and that’s how you’ll continue on through the rest.

  7. Don't We Look Alike? July 18, 2012 at 7:35 pm #

    I’m praying for you, your whole family, and your sweet Cora.

  8. Shasamdrew July 18, 2012 at 8:54 pm #

    Tears in my eyes…she has one heck of a momma in you!!! I will be praying in the upcoming days for all of you.

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