We have been patiently waiting for results to come in from various tests we have had done. Today started out by me leaving messages for the immunologist, ENT, and infectious disease doctors. I also called my insurance company to see if they had approved the testing the oncologist wanted done.
-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.
-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.
-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!
Today was a very busy day for Phoebe. We had two doctors appointments.
First was the oncologist. He went over the immunologists results, the type of tests the ID doctor ordered (since we don't have results yet) and reexamined her. He informed me that the syndrome they want to test for is so rare that it requires prior approval from the insurance company before you can do the blood work. Together we chose the option of drawing the blood today, that way if and when we get insurance approval they already have the samples to do the testing. He didn't want to get the approval first and make us come back up to the hospital to have her blood drawn. Because we don't have the ultrasound report, and it was done in the hospital, he went down to the department and had a radiologist show him the pictures that they took. He wants to see what the pediatric radiologist has to say so he can compare the two reports side by side. He again asked that I have the surgeon call him so they could conference about how best to handle her case moving forward. He also took blood to run another CBC, and said he would like to see her back in May so he can check to see how her neck is and because he is sure we will have all the results we are waiting for by then. While we were leaving his office he was already on the phone working on getting the insurance to approve this special blood test. He seemed pretty confident that we would get the approval since this is now a reoccurring issue and we have such a full detailed family history of all the health issues that go back a few generations.
The surgeon also went over the immunologists results, the types of tests the ID doctor ordered and reexamined her. He agreed that the best thing to do right now is to wait to get all of the results from all the tests we are waiting on before we make a date to do a surgery. He also wants to see her in May after we see the oncologist again, and told me he is available the first and last weeks so when I call to make my appointment I know what days to ask for. To make both these appointments I have to wait til next week, when the Valerie Fund has the doctors schedules of who will be in house when. Phoebe was happy at this appointment that she didn't have to give blood, but this was also the first appointment where she flinched when the doctor examined her neck. She is starting to feel more comfortable telling them what hurts and when. When we were leaving this appointment, the surgeon was already calling the oncologist to conference.
Both doctors also made a point to take some time to talk to me because they both noticed that I am not appearing to be frantic, over emotional and highly concerned. I explained to them that this is killing me inside, that I am so concerned for my daughters health and well being I could bust and I just want to know what is going on with my daughter. But I also explained to them that it does Phoebe no good for me to be in their offices freaking out hysterically, because I could forget to tell them something, or misunderstand what they are saying to me, or just not hear them at all. I told both of them that my getting hysterical and acting like a frantic fool does not do my daughter any favors. I can't change what is happening, and my acting like that doesn't make all of this go away. I am my daughter's best advocate and voice, and to be that I have to be at the top of my game.
It was very humbling to hear both of these men commend me for the way I have been handling myself and this situation.
So, the waiting game continues. I am going to call the ID doctor tomorrow afternoon to see if we have any results back. At least she gets a break from doctors for the rest of this week, and hopefully next week as well.
We spent an hour with the ID doctor today. He was very thorough, and read every single report I brought with us. Once again, upon physically examining her, this doctor became highly concerned with her neck. He said that our best option for getting an answer, which no one is excited about, is to biopsy what is in her neck. In the meantime he ordered a whole bunch of lab tests to rule out some more autoimmune diseases and infectious diseases. We should have those results in a few days. He also said that how he sees our worse case scenario is that every test comes back negative, and the biopsy shows what it did last time, which leaves us back at square one of not knowing why this keeps happening to Phoebe. In the meantime, he says to keep following each lead we get, cause if for nothing else it is ruling stuff out. We got out of his office about 3:05 and rushed to Quest for the lab tests (we were in Mountainside and had to go to Bound Brook) Thank God for Nicole who was close by to Quest and went there to sign Phoebe in and wait for us to get there to ensure that she was seen today. (Quest closes at 3:30) The door was locked, but because Nicole was there and spoke to the phlebotomist we were let in the door at 3:29!! Hopefully by Thursday afternoon we will have the results.
The immunologists blood results fully came back and we were definitely able to rule out some autoimmune diseases. They also pointed us in a new direction, at a rare condition. She has two specific lymphocytes that are elevated. He consulted with her oncologist and they both agree we should do a specialized test to see if this rare condition is what is causing everything to happen. They say a lot of what is going on with her lines up with this condition.
This brings us to tomorrow. We see the oncologist for the specialized test at 10:30 am, and then we have another consult with the surgeon at 1. I was hoping to have all the results by the time we had to see the surgeon (which was originally supposed to be Friday) but I can at least bring him the names of the tests we are doing/waiting for results on.
The ultrasound went well. They were quite amazed at how still she sat and how easy it was to do on a three year old. The tech took the first set of images and wanted to bring a senior radiologist in so he could have a look first hand. He took a lot of medical history and spent a good amount of time taking the images. He said he wants the pediatric radiologist to make the final report, but she was not in today, and might be out all week. He feels that since she specializes in pediatrics we will get the most accurate assessment and since this is the second occurrence in such a short time span and with how young Phoebe is, he doesn't want to leave it in anyone else's hands other than this specific radiologist.
So hopefully it will be the beginning of next week that we get these results.
Our doctors for this week are all jammed into the next three days.
-Today we have an ultrasound of her neck.
-Tuesday we have an appointment with an ID doctor to rule things out.
-Wednesday we have an appointment with her oncologist in the morning for more specialized blood work and an appointment with her surgeon in the afternoon.