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.
Photo: Keeping our spirits up despite all the appointments and tests