This was the email I opened this morning from one of my specialists:

“Thank you for the updates — how are you doing today?  I do not think we can definitively rule out carcinoid until we get the PET.”

They still think I might have a carcinoid?!? And, I cannot get the PET CT Scan approved! This is NOT OK!

How can it be that I finally have a fantastic team of specialists that are trying to figure out what is going on with me….but the insurance company has denied all of the necessary test ordered (CT Scans, MRAs, MRI, PET CT Scan)!?!  Does the insurance company care that there is a progressive degenerative diseases process happening to me right now??? Do they care that I am a mother of three young children. I need the use of my hands. I need the use of my lungs and my kidneys! I do not want to progress any further than I already have in the past six months.

They deny, deny and deny the very necessary tests needed for the doctors to understand what is going on or at least will allow them to rule things out…like carcinoid!? I have spent countless hours going back and forth with the insurance company over the last year and a half for getting the approval for the  sequencing on our family. They denied the whole genome sequencing on all five of us.  They denied the whole exome sequencing on all five of us. Thankfully, they approved the quint analysis for Ava. They did not approve analyzing the data on Oskar, Lucy, Justin or me. So, Oskar and Lucy are not as important as Ava??  Oskar and Lucy do not deserve to have their sequencing analyzed?  And, I am suffering a progressive degenerative disease process but they do not care to have my sequencing results analyzed or approve the necessary tests ordered by the top specialists??

So, I am kissing my babies goodnight with even more prayers than normal. More prayers to find answers for Ava. More prayers to find answers for Oskar. More prayers to find answers for Lucy. And, more prayers to find answer for me. We no longer should be grouped together. We all need the help of the doctors individually and equally. And, our insurance company should respect the decisions and requests made by the specialists working with our family.

Unfortunately, what I am realizing is that our insurance company does not really care if I keep progressing and that eventually someone else will end up having to take care of Ava, Oskar and Lucy. Sad, isn’t it?