Tuesday, November 10, 2009

I talked with the scheduling people at MIRT today and they have scheduled ALL of Tanner's tests on Tuesday, November 24th starting at 6:30 a.m. Then we can't see Dr. Barlogie until Monday, November 30th so they said if his lab work all looks okay, we can come back home for Thanksgiving and just come back on the 30th in time to see the doctor at 10:00 a.m. After that appointment, they can put in his lines and start his treatment, hopefully, on Tuesday.

She said she felt it was important to allow Tanner to have his holidays at home so she scheduled everything so that he can have the tests and get all the results back in so that Dr. B can see them first thing Monday morning and treatment can start the next day.

It will be a fast trip up to Little Rock on Monday the 23rd and then have tests on the 24th and get back in the car and return to Fort Worth. The only thing that might alter those plans is that the bone marrow aspiration in Tanner's lower back is the last appointment of the day and I'm not sure how well he could tolerate a 5-1/2 hour drive afterwards. Knowing Tanner, he will say he's fine as long as he knows he can come home. He actually would probably be okay as long as he can put the seat back and just rest on the drive home.

If everything works the way they have it planned, we should be home for both holidays. From what I've seen so far the first week will mostly be applied to the chemo treatment, his system should bottom out by the end of the second week, and then he should climb back up by the end of the third week. If all goes according to that plan, we would be home before Christmas!

From what I'm hearing on the insurance front, it looks like the insurance company is saying that they will pay for one stem cell transplant (Tanner has had two) but they have denied coverage for the chemotherapy because they say it's "experimental" and is not according to the "standardized" therapy for multiple myeloma.

What they are not considering is that LESS than 1% of mulitple myeloma patients are pediatric patients. Who determines what it "standard" treatment for a teenager with multiple myeloma when it is SO very rare? From what I've gathered from my reading, the standard treatment is three chemo medications and Tanner has been given seven and his insurance says that is not acceptable.

I know that Tanner was given the most aggressive form of chemo that Dr. B prescribes but I feel that's because he's so very young and the myeloma was so aggressively destroying his bones. In an effort to give him a long and healthy life, I think Dr. B felt that the most aggressive form of chemo was necessry to assure they kill all these cancer cells.

Another thing that is bothering me is that they gave Tanner one form of chemo the first time and the insurance denied it as experimental. Then for the second treatment they changed him to another, more aggressive form of chemo and it seems it's been denied too. I guess the insurance company is denying both forms as experimental??

Now there's some person sitting in an insurance office saying Tanner's treatment is not "standard" and that he's been given too many drugs. I wonder if this person has a child - and if so how they would feel if they were in our place? It's just infuriates me.

At Tanner's next appointment, I'm going to talk to the children's oncologist and will ask him to write a letter explaining why he felt that Tanner (a pediatric patient) needed to be referred to Little Rock. This is the doctor who told me that we had two options; MD Anderson in Houston or MIRT in Little Rock.

I mean, my goodness, I've talked to patient after patient at the center while we've been in Arkansas, and NO ONE else that I talked to had an insurance company that has denied treatment. I've talked to one other person who's insurance would only pay for one stem cell transplant, but NO ONE else I've talked to has been denied for any reason - much less because the treatment has been deemed as experimental.

I feel that this is nothing other than an insurance company that is trying to get out of paying a claim.

It' just sad - and infuriating!!


  1. I am thankful that Tanner is getting the treatment he needs regardless of what the insurance company believes. We will just have to cross that bridge later. I am praying that he will need maintenance follow up here at home after this next round of treatments. You all need to get back to as normal a life as possible. I have been trying to think of some way to do a benefit that would help pay these mounting medical bills. Maybe someone out there has ideas?? Please share.
    God will lead us through all of this and it will be what is best for us all. I have never had any doubt that He knows what we need and He gives us what we need.
    We love you guys, Granny and Pop

  2. How does the insurance company come up with what is usual and not. And what is considered standard vs experimental? What insurance company are u with. Sounds like they r not a good company

  3. The ins co says that doctors come up with standard treatment guidelines. The thing is the standard MM patient is over 50 years old - usually 60-70. I wouldn't think there's a "standard" treatment for a child. I know the pediatric oncologists here in Fort Worth definitely didn't know how to treat him which is how we found MIRT in AR. I think they look at a group of MM patients and average out what treatment they received and that would be considered standard. The ins co is US Health & Life (Multi Plan) administered by Group Plan Administrators. I've never heard of them before this.

  4. What group of doctors? Is this a survey of random physicans. Or like u said the usual tx for mm. Is there a pediatric disease that is like mm that is/has had a similar treatment like tanner has recieved? The insurance should not be able to deny treatment just because he falls out of the normal for mm.