Tonight is one of those nights that I am totally exhausted. I know that Tanner's exhausted too because he and I have arrived at the point that we have snapped at each other this evening. I'm sure it will be all better tomorrow after we get a good night's rest.
We were telling the nurse today that Dr. Barlogie said Tanner should be able to go home in about a week if his platelets reach 50 (on their own without a transfusion). She said that Tanner's platelets won't come up until they quit giving him his his growth factor shots and they won't quit the shots until his white blood count (WBC) rises to a 2 or above and stays there for two days. Unfortunately his WBC went down from a .05 yesterday to a .04 today so right now he's headed in the wrong direction. The nurse explained to us that these three days will be his lowest so I guess he will have some more rough days to get through before we get to go home.
They had to give him more platelets today so his number will be higher tomorrow but we can't even consider his platelet count until we get the white blood count above two. They gave him pre-meds before his platelet transfusion today but he still had another allergic reaction and had to be given high doses of Benadryl and steroids before we could come back to the apartment.
When his labwork results came back today his "CRP" was high which indicates that he has an infection or inflamation so they gave him an antibiotic IV drip also. He hasn't had a lot of energy or been in the best of moods today so maybe he had something happening that the antibiotics will help out with.
Granny Jane is still here with us and we have been talking to lots of people about the insurance and the fact that they are indiscriminately denying coverage for everything turned in for Tanner since we've arrived in Arkansas. I mean they denied coverage as "experimental" for the orthopedic doctor here in Arkansas who has been seeing Tanner for his broken leg. X-rays showed that his bone wasn't healing correctly and the orthopedic doctor had to put him in a new cast and his treatment was deemed ineligible because treatment was experimental. How crazy is that?
They have just absolutely turned down all claims to date (x-rays, scans, MRI's, doctor's, etc...) as ineligible because they consider his treatment experimental. I don't think they are even looking at the claims at this point. EVERYTHING is experimental.
The doctor's in Fort Worth sent us to Arkansas for treatment because they didn't know how to treat Tanner since, as they explained to me, it is so very rare that Multiple Myeloma hits a teenager. They said that his cancer was so widespread that he would need the most aggressive cutting edge treatment available to try and achieve a cure. They knew that his best chance of obtaining that cutting edge treatment was in Little Rock. What the insurance hasn't been able to grasp so far is that cutting edge is not synonymous with experimental.
I worked for a surgeon for eleven years filing insurance and I know that many insurance companies just automatically deny major claims hoping that the patient will just accept that decision and the claims will be dropped. They are seriously mistaken if they think that I will allow that to happen with Tanner's claims.
I spoke with our Case Manager with the insurance company today and she said that she has been trying to get documentation from Dr. Barlogie's office regarding the treatment so that an appeal can be filed but that the doctor's office hasn't been forthcoming with the required information.
This afternoon Granny Jane stayed with Tanner while he was getting his IV's and I went to the doctor's office and spoke with the insurance lady. Her desk was covered with materials she has been gathering to send to the insurance company. At this point, the doctors office is about to turn in the information necessary to file an appeal for the denial and we will see what the insurance company has to say. If they still deny, I have the forms already gathered to file a complaint with the Department of Insurance.
From what I gather from Sandra at the doctor's office, the insurance keeps denying coverage because they say Tanner is undergoing treatment in a "protocol" (research). In actuality, he is not participating in a protocol - and in fact because he is a minor, is not allowed to participate in research treatment.
Hopefully, the pages and pages of literature that Sandra has gathered to send to the insurance company verifying that they have successfully been providing this treatment to patients and affecting a cure for a number of years will be sufficient to change the denial to acceptance. I mean at what point does "experimental" change to established treatment? How many years does it take? If they still deny, I will be using that literature to file a complaint with the DOI.
Luckily, Dr. Barlogie doesn't deny treatment just because the insurance company denies coverage and Tanner is well on his way to remission.
Granny Jane leaves in the morning so it will be just the two of us again. We will both miss her and have really enjoyed having her with us!