Today CDPHP officially denied Ana’s liver transplant at Westchester Medical since the liver team is not a participating provider. They want us to transfer her to Columbia. So, as a result, I spent the first half of the day dealing with insurance issues. That is, by the way, a GROSS understatement.
I finished gathering a bunch of documentation for the emergency Medicaid application (I’d started this yesterday), then photocopied everything and sent it to the transplant finance coordinator at Westchester. Then I began the laborious process of switching my insurance coverage to MVP which required that I join a local Chamber of Commerce (for $300) and physically drive there to fill out the application and drop off the check. I then gathered paperwork together for the new insurance broker and I will fax all of that over on Monday.
After two and a half hours of phone calls, faxes and paper wrangling, I was finishing up and trying to get out the door so I could go to the hospital. Well, I lost the MVP application I’d just filled out and I mean it totally vanished. That’s when I had my complete mental breakdown. Let’s just say my throat still hurts. I ended up taking half a Xanax and filling out a new application. Emotionally, I’m completely drained. We really want to keep Ana here at Westchester even though we know Columbia is an excellent hospital. Switching to MVP means that won’t happen – but they will need to discharge her for 24 hours once the insurance is switched over so she can be re-admitted under MVP. Also, our premium is now $1330/month. It was $400 with CDPHP.
That wasn’t the end of this emotionally harrowing day. I finally got to the hospital and Jim and I sat down with Doctors Hochberg and Elmacken around 4:30 p.m. today. They’ve been in contact with a pediatric oncologist at Sloan – Dr. Paul Meyers who (like us) thinks we shouldn’t rush Ana to get a liver transplant without at least trying to save the healthy portion of her liver. Now, remember, the liver surgeon thinks there’s no way he can saver her liver – the tumor is too involved with the blood vessel. But, as parents, we have to try everything we can because a liver transplant is for life.
So…new plan…Jim is going to overnight a CD with Ana’s test results to a top liver surgeon at Sloan tomorrow. Hopefully it will get there by Monday and that surgeon will give us a second opinion. If he feels the liver can’t be saved, that will be two top liver surgeons in the world who recommend liver transplant.
But here is the ultimate kicker. Even if these two surgeons say the liver can’t be saved, this tumor is so incredibly rare that there’s no way to know for sure that a combination of chemotherapy and steroids won’t shrink it down to a point where it actually can be saved.
As parents, we are now faced with this choice. Give Ana two rounds of chemotherapy to see if they can shrink the tumor to a point where the healthy portion of her liver can be saved, or put her on the transplant list immediately. Ana wants to get the transplant. She wants to get better. She wants to get out of the hospital. But we are looking ahead to when she’s 18, 27, 40…and we are wondering how she’ll feel about the fact that we didn’t try everything humanly possible to save her liver.
So, six weeks of chemotherapy sound awful, but what if there’s a miracle? What if her liver can be saved? I hate this choice. But I know her hair will grow back, and her white cells will go back up and she’ll recover from the chemo, so as a parent how can I not try to do this for her?
Jim wants me to post more photos, so here is a photo of a mural near Ana’s room in a little lounge called Simon’s Garden.