Friday, April 22, 2011

Still In Remission

It's been a really long week... and I have a lot on my mind... but I haven't been able to make myself sit down and write about it until now...

I've settled in for the night and I thought I would try to just go ahead and put some of this into words.

Let me start by saying, Tanner is still in remission... 

They saw something on the original tests that made them think the cancer was probably back.  Dr. Barlogie was looking through Tanner's file and you could tell he was agitated.  He asked if Tanner was getting his weekly Velcade and Revlimid and I told him that he hasn't had treatment since January. 

He looked at me like I was crazy and wanted to know why in the world not.  I told him that his orders for treatment in Fort Worth had ended and that it had taken months to get the Texas Medicaid to approve Tanner's testing.  He started yelling and cursing and asking me if I didn't understand the precariousness of my son's health.  I replied to him that I had emailed him and his assistant Bonnie about the fact that Tanner wasn't getting treatment while all the insurance issues were being worked out (and they had both replied to me so I knew they were both aware of what was going on) - and he told me it was my responsibility to scream and shout and stomp my feet to make sure that Tanner was ALWAYS getting the treatment he was supposed to receive.  I told him that I had emailed his office several times about Tanner's situation and that I counted on him and Dr. Albritton to communicate with each other about the care that Tanner was receiving.  He told me that he was "one man" and "couldn't cut himself into small pieces" to always oversee all of his patient's care.  He told us that the Pet Scan report from Fort Worth indicated that there were new lesions in Tanner's bones and that "it might be nothing" or "the cancer might be back" and if the cancer was back his chances of surviving decrease 50%-60%.

He asked me why I wasn't living in Arkansas and when I mentioned my job and that I have a house he told me I needed to decide what was most important - the things I have in Fort Worth - or Tanner's life.  He was in too much of an uproar for me to explain to him my fears of not being able to support myself and Tanner in Little Rock - or the length of time it would take to sell my home - or my fears of how if I move to Arkansas and start over with a new job, who would take care of Tanner while I mainted a job if (heaven forbid) he ever did relapse and we lived there alone without a support system. 

As upset as Dr. Barlogie was, there was no talking with him at that point.  To say that he is "passionate" about his patients, is putting it mildly.

It was an emotional scary appointment and Tanner and I both ended up in tears.  Dr. Barlogie took us to Bonnie's office and they called the Chancellor of UAMS and received approval for a free bone marrow biopsy and a new PET scan.

Tanner and I endured two days of living with fear of relapse in both of our minds.  Thoughts of chemo, stem cell transplants, nausea, and fatigue were going around and around in both of our heads.

But... when the new tests were back and it was "all said and done" (like my Memaw used to say), Tanner is still in remission.

At the follow-up appointment, Dr. Barlogie sat across from us at his desk and told us that all the new tests indicated that Tanner is in complete and full remission and the "maintenance chemo" needs to continue just like he's had for the last year and that we are to come back to Little Rock in four months.  He looked at me and asked if we were going to be Arkansas citizens by then.  I told him I would do everything in my power to see that Tanner gets the care that he needs.  He hugged me and then he hugged Tanner and held him close and told him that he loved him.  Tanner replied and told him that he loved him too.

We have four months of treatment here at home to allow us time to decide how we need to procede with Tanner's future care.  Do we attempt to talk Dr. Barlogie into trying to continue to work with Texas Medicaid?  After how he reacted to the tests done in Fort Worth, I don't see him as willing to do that.  Do we move to Arkansas and find a job and a place to live so that Tanner can receive care at UAMS and Dr. Barlogie can personally oversee his care?  Or do I see if there is an experienced MM doctor here locally capable of giving Tanner the level of care that he needs to assure him the longest life possible?

We have a lot to think about....

In the meantime, my son is in "complete and full remission".  Now we just try to decide the best recourse to keep him that way...


  1. Angie: Until you can make an informed decision -you could get in touch with Dr. Larry Anderson at the Bone Marrow Transplant Center at UT-Southwestern, in Dallas. He's the only MM Specialist, in your area. (He's the one Bob used.)

    His name is Larry Don Anderson - 214-645-4673

    I'm so sorry that your week was so stressful, but so happy that it turned out good - in the end. So thankful that Tanner is still in CR!!
    What an Easter blessing.

  2. Coordinating care with the at home docs and Little Rock is a total pain. Our at home doctor is arrogant as hell and offended that he is a "secretary". This, despite me sending him a letter spelling everything out, his office calling me to set up an appointment, only to find out he didn't approve of what we did and he is annoyed he is just rewriting orders. Pull my hair out and blow my brains out! I'm so sorry you are having so much trouble with all of that. It is an added stress to the maximum order. But I'm so happy that Tanner continues in remission!