Friday, February 25, 2011

A new low

Ok, I thought the issue with coverage for Tanner's tests were because they were going to be performed in Arkansas. The lady in the insurance department at MIRT told me the reason given to her for the denial was because "peer to peer" is not an option.

I asked her if that meant they wouldn't cover treatment from an Oncologist in another state if that coverage was available from an Oncologist in the "home" state and she said she "didn't know" that she was "assuming" that wasn't what it meant...  I don't know why she couldn't clarify what it meant???

Today, when I got home from work there was a letter from Medicaid saying that they have denied coverage because of several reasons, foremost being "The clinical information submitted does not describe a patient with Stage I "smoldering myeloma (cancer of plasma cells), solitary plasmacytema (tumor made up of plasma cells), or signs/symptoms suggesting progression of disease."

Another reason, "The clinical information submitted does not describe new or worsening signs/symptoms, or failure of laboratory tests to return to normal in this patient with history of myeloma (cancer of plasma cells). We are unable to authorize the above procedure based on nationally accepted imaging guidelines".

What?  What??

Never once when Tanner was first diagnosed did his "laboratory" work indicate cancer.  The first Oncologist we saw in Fort Worth told me that if they were basing his diagnosis on his lab work, they would think he was completely healthy. Without the full body scan, they would have never found the over 100 cancerous lesions throughout the bones in Tanner's body.

Now, Medicaid wants to deny any further tests because Tanner's lab work doesn't indicate the disease is worsening or progressing.

I'm really without words at this time....

Wednesday, February 23, 2011

Another bump in the road

Well, the insurance person emailed me from MIRT this morning that all of Tanner's tests scheduled for this week have been declined by the insurance.

I've emailed Bonnie to ask if we can't just have Tanner's tests done in Fort Worth and have the results sent to Dr. Barlogie.  I told her I would pay for the consultation with Dr. B so that we can receive his recommendations for the next phase of treatment if we can just get these tests all taken care of.

She emailed back and said they are working to find out why insurance will pay for the tests in Texas but not in Arkansas when they have signed up for Texas Medicaid at UAMS.  She said the cost will be the same whether they are performed in Texas or Arkansas and will be no different in regards to the insurance.

At this point, they are calling a Director at Texas Medicaid to see what can be worked out, in the meantime, Tanner's tests have, once again, been cancelled.

I told her we are going on three weeks now that Tanner has been without treatment.  She copied me on her reply to the people in her insurance office stating that this needs to be taken care of quickly and Tanner be brought back to MIRT as soon as possible.

So, once again, we are on a holding pattern while they are sorting out insurance issues.

Tuesday, February 22, 2011


Well, I'm home sick in bed curled up with my laptop.  Coughing, headache, lethargic, body aches, and chills...

I'm closed up in the bedroom trying to make sure Tanner doesn't catch anything from me.

This really needs to pass so that I can get him to Little Rock for his tests Thursday and Friday. One of my friends told me stress is destroying my immune system. Maybe he's right.  I wish I was like all of those people who can just take things as they come and not worry about what they can't control. Me, I worry all the time...

Anyway, here's hoping this passes without Tanner catching it and that we are okay to make it to Arkansas later this week!

Monday, February 21, 2011

History.. need not be lived again

I received a message from MIRT on Friday and they say they have worked out Tanner's insurance issues and they want him to come for all of his tests as soon as possible.

The only thing that will work with Dr. Barlogie's schedule is for us to come for his tests on Thursday and Friday and then wait to see the doctor on Monday afternoon.

They emailed me a copy of the schedule they worked out and his tests start Thursday around 12:30 p.m. and ends with an MRI at 7:45 p.m.  We'll be there all day until late at night, will have to go back on Friday to complete the rest of the MRI, and then wait all weekend to be able to see Dr. B on Monday...

I asked if this just applied to Dr. Barlogie and MIRT and if we would need to see a doctor here in Fort Worth about Tanner's leg since Dr. Nicholas doesn't take Texas Medicaid and Bonnie asked me to give her a few more days to "work on Dr. Nicholas".  I haven't heard anything back yet, but I'm thinking any surgery that might have to be done on Tanner's leg, will most likely have to be done by someone here locally.  When I talked to Dr. Nicholas' nurse, she didn't seem to think it would be a big deal for us to see a local doctor; it's Dr. Barlogie who has issues with us seeing physicians who aren't experienced in Multiple Myeloma.

It will be a long few days but we are anxious to see what this next phase of Tanner's treatment will be.

History, despite its wrenching pain, cannot be unlived, but if faced with courage, need not be lived again... Maya Angelou

Wednesday, February 16, 2011

Still working on Insurance

There's not a whole lot to post right now.

We are still in a "holding" pattern while the insurance people at MIRT are working to get everyone at UAMS that needs to be enrolled in Texas Medicaid.

I was told by UAMS that Tanner will need to have a Medicaid referral before we come back to Arkansas and that it was a "timely process" so I called his PCP's office today and talked to the lady in their insurance office about obtaining one. 

She said in Texas you don't have to have a referral for Medicaid and that she doesn't know how you go about doing one and that Tanner will need to call Customer Service and ask them who she would need to call and how she would go about requesting such a referral.

Now, back when I worked for Dr. Miles and filed insurance for his patients, I would have made those calls myself - but they want Tanner to call for them to get instructions. I'll have to be around when he makes the call so that he can give them authorization to talk to me because he won't have any idea what to ask and most likely won't understand their instructions.

They must have had lots of ice in Little Rock also last week because Sandra Wilson in the MIRT insurance department called me last Friday and told me she was just now starting the process of signing everyone up for Medicaid because they had been frozen in.  Tanner hasn't had maintenance chemo for over a week now.

Monday, Bonnie (Dr. Barlogie's Assistant) emailed everyone and asked what the status was because, she said, "this kid needs to get up here as soon as possible".  Hopefully this all won't take too much longer.

I'm just ready to find out what the next phase is so that Tanner can start to move on with his life.  He can't keep living in this holding pattern of waiting to see if he's going to have to have surgery on his leg or not.

A bit of good news, though, the Make A Wish Foundation called me and he has been granted his wish to go to Hawaii.  They will be sending us to Uahu, (she said that's where they send everyone who "wishes" for Hawaii) for a week some time this summer.  They've given me possible dates in May, June, or July and will let me know when the exact date is all finalized.

He's quite excited!!

We loved with a love that was more than love...  Edgar Allan Poe

Wednesday, February 9, 2011

Holding Pattern

Tanner had his last maintenance chemo at Cooks Children's Oncology Department on Monday and we are on "hold" for anything else right now.

I've received emails from Dr. Barlogie and Bonnie from the Myeloma Institute for Research and Therapy in Little Rock and they are in the process of getting the doctors who need to be involved in Tanner's treatment signed up for Texas Medicaid before they reschedule him to return for his restaging tests.

So, in the meantime, he is getting a break from any treatment right now.

I just got a text from our friend Shirley and she had her restaging tests done this week at UAMS and the doctor told her this morning - no signs of Multiple Myeloma anywhere in her body! Yay!!

Now we just pray that Tanner receives the same news when we get there!

Don't part with your illusions. When they are gone, you may still exist, but you have ceased to live...  Mark Twain

Friday, February 4, 2011

A stumbling block

Box seats thanks to Donna and Paul
I checked with the people at the Myeloma Institute in Little Rock about three months ago to ask if there would be any problems with the fact that Tanner's Cobra Insurance was running out on January 31st - after which he would only have Texas Medicaid.

I received an email from Dr. B's assistant letting me know that UAMS accepted Texas Medicaid and that it would be accepted just like if Tanner was receiving his care in Texas. I emailed back and asked her if she thought Dr. Nicholas (the Orthopedic Oncologist that Tanner has been seeing for his broken leg) also accepted Texas Medicaid and she said that coverage was "campus wide" and that everyone at UAMS participated.

I took that to mean that everything would be okay for this next round of tests that are scheduled for February 8th in Little Rock.

I called the Orthopedic office to check and make sure that they had Tanner scheduled to see Dr. Nicholas while we are there for all the tests next week.  Kim (one of the nurses) called me back to tell me that she checked and that Dr. Nicholas isn't on Texas Medicaid - and went on to explain that many of the doctors, pathologists, and radiologists (including Dr. B who lost his TX Medicaid contract in 2009),  aren't on the plan either and that we would be taking a "huge" risk of having to take financial responsibility for most of the charges that would be incurred if we come to UAMS for the scheduled tests.

I have to admit that I am really frustrated and upset that this wasn't explained to me more thoroughly when I called three months ago to check on this.  If I had know that the Medicaid wasn't going to be accepted, we could have made sure that Tanner's appointments were all scheduled in January before the Cobra ran out.

Now, here we are and Tanner has been on Maintenance Chemo for a year and we don't know what the next step is supposed to be.  Some patients stop chemotherapy at this point - and we have heard that other patients have been scheduled for another year.
I emailed Bonnie and Dr. Barlogie and explained to them everything I have discovered and Bonnie has replied to let me know that they are going to check and see what can be done.  Dr. Barlogie is in Japan and they have to wait to hear back from him to see how he wants to proceed. 

I asked Bonnie (and copied Dr. B on the message) if they could at least give me some direction on a clinic or Oncologist that they might refer Tanner to here locally in Texas.

 At this point I don't know if we are going to Arkansas next week or not.

Tanner and I both have the utmost confidence in Dr. Barlogie and it's just scary to be here at the maintenance chemo one year milestone and have no idea what Tanner's next step would be - or where he's going to have to go for treatment in the future.

In the meantime, the Multiple Myeloma Research Foundation has some information on their website about a cancer clinic over at Baylor Hospital in Dallas that treats MM patients so I emailed them and explained a little about Tanner's case and am waiting to hear back from them.  From what I could ascertain from their website, they do accept Medicaid so I'm hoping they might be an option for cutting edge treatment here locally.

Donna and Paul
I just wish I knew what Dr. B's recommendation was going to be...

I had recently come to the conclusion that I was going to "live in the moment" and enjoy my "15 minutes of happiness" whenever they occured.  I had realized that I could only control myself and no one else and that I have to let go of the constant worry and stress -  then something like this gets thrown at me and "living in the moment" is hard to gain all over again.

When Tanner's well being, and life, is on the line, I had come to count on Dr. Barlogie.

Letting go is the first step to gaining control...