-Insurance phone call #1: There was no approval yet, and the rep could not give me more information with out the specific CPT codes. So this added calling the oncologist on to my list.
-Oncologist call #1: The wonderful woman who has been working with us, gave me all of the codes, and informed me that the reason for my insurance dragging their feet was because this one test is only done at one place in the country, Mayo Clinic. My insurance was basically throwing a hissy fit and trying to find a cheaper place that could do the test (even though there isn't)
-Infectious disease doctor call: His phone call ruled out everything he tested for. Every infectious disease and disorder he tested for came back negative. He encouraged me to continue ruling things out and working with the team we have in place, and wants to see her next week for a follow up.
-ENT call: The ultrasound results came in today, and show the same 5 masses, which are growing lymph nodes. They appear to be similar to what the one was last year, but they are larger and more worrisome to both the pediatric radiologist and ENT. She also asked to be updated on who we have seen and where we were at with other tests, and she also encouraged me to keep doing what I am doing and to keep her informed of any developments.
-Immunologist call: He has been keeping in contact with the oncologist and wants to have a follow up visit with us in two weeks and hopes to have the copies of the oncologists tests by then. (our most uneventful phone conversation of the day)
-Insurance call #2: I gave the rep all of the codes and explained to her why we needed these tests approved. As she tried to look in to approving them, she informed me that half of the tests that were ordered were specific cancer marker tests, and that in order for them to be approved she needed a diagnostic code. She also asked how quickly the doctor wanted these tests done. I told her briefly of Phoebe's history and what she is going through and said "As her mother, there is a huge urgency to this and these tests need to be done now." She agreed. She asked if she could place me on hold while she looked through all of Phoebe's history to locate the diagnostic code. I told her that while she did that I would call the oncologist and get the diagnostic code from them for her. By the time she took me off of hold, I was still waiting for the oncologist to call me back with diagnostic code. This sweet woman told me that from looking through Phoebe's history her heart was breaking and she couldn't imagine if that was her kid going through all of this. She said she actually cried going through all of the tests, procedures and surgeries Phoebe has had. She said if she was me, she would get the test done and then fight with insurance later. I told her that is exactly what was going to happen if this wasn't approved today. She went to check another place for the code, encouraging me to keep fighting for my baby girl, when the oncologist called me back and gave me the code she needed. The rep put through a dummy claim with all six test codes and the diagnostic code and they went through and were approved! I don't know if the whole cost is covered but at least the insurance is going to pay for some of it! She gave me the reference number and her extension and wished us good luck and hopes this will bring us the answers that we need!
So tomorrow first thing when the office opens, I have to call the oncologist to have them give me a time to bring her in to draw more blood (Mayo wants the draw done within 24 hours of starting the test) and start this testing process! Hopefully we are one step closer to an answer!
Photo: At The Valerie Fund for an appointment