We got back from our trip last Saturday and I’ve been meaning to post an update, but I had a lot of catching up to do with work (and laundry, cleaning, grocery shopping, etc. etc) I’ve never had a week long vacation away from home (well, there was that one time when I was about 22…) It’s definitely hard to get readjusted to normal not-paradise living…
First, I want to thank Make A Wish for putting the amazing trip together for us.
They thought of literally everything – from the limousine service that provided transport to and from the airports, to the meals and souvenirs that were all covered so we didn’t have to spend a dime of our own money (if we didn’t want to). This is truly an amazing charity – please put it on your list of places to give over the holidays – or all year round.
Actually, the limo company deserves a special thanks as well. They have a contract with Make A Wish and have obviously done this before. The driver was incredibly sweet. He showed up at 4:30 a.m. on Saturday morning even though pick up time was 4:45 (he just wanted to be sure he got to us on time). He had a big gift bag filled with goodies for the girls and he truly treated us like celebrities. If you ever need to rent a limo or need transportation service in the Hudson Valley for some reason they are A.N.N. Transportation in LaGrangeville. The limo driver also had a big bag of goodies waiting for the girls on our return trip as well.
Now for a quick update on where we are with Ana’s new treatment. Dr. Yamashiro called me on Monday and said that he was trying to get approval for a larger dose of the medication – Jakafi – than insurance wants to pay for. As of Friday, they were still waiting for approval. The approved dose is 25 mg/day, but Dr. Y wants to start her at 50 mg/day (actually he wanted to start her on 75 mg twice/day but I think that’s likely impossible). I did a bit of research and learned that this is one of those crazy expensive oncology drugs that no mere mortal could possibly afford. Apparently it’s a breakthrough drug that treats a disorder called myelofibrosis by targeting the JAK pathway(s). The JAK pathway is responsible for a number of blood disorders though, so the potential for this drug to treat various blood cancers is high. Here’s an article in the NYTimes from a couple of years ago that quotes the price of ONE MONTH of Jakafi as around $8000 – that’s for the 25 mg/day dose. I believe it’s since gone up to about $10,000.
Ana was supposed to have a PET Scan yesterday which they’ve postponed until they hear back from the insurance company (Empire BC/BS) on whether they can get the higher dose or not. I wonder who is on the other end of the phone when the doctor calls and explains that this is for a 13-year-old girl with lung tumors who may need invasive surgery which may only be a temporary reprieve from the tumors returning while this drug may prove a more effective (and much less invasive) way to treat them. I wonder if they have to think about it because if they grant this exception for one child, they’ll have to grant it for more…I wonder why a drug that can save people’s lives (and has proven to do so) is so expensive. With a price tag like $120K/year (or twice that?) I don’t think we can fundraise ourselves into getting this drug.
I know this post is getting long and I really wanted to post pictures from our trip. For now, Ana is doing really well. I’m pretty sure she’s grown again and is officially taller than me (I’m only 5″1′). Our summer vacation has officially begun which is somewhat of a relief since all the daily obligations of school (and associated school events) have stopped for now and we are pretty much at the hospital’s beck and call. My frame of mind is…anxious. As I mentioned before the trip, I had to pay a huge amount of money in taxes and that’s left us broke. We came back from paradise with two cars that needed inspections and repairs and some bills due that I need to pay late until I get some client checks in. It’s a harsh, depressing return to reality and the uncertainty of what the insurance company will or won’t approve (and how that directly effects Ana’s treatment) hangs heavily over all of us. But, I have a new happy place to go to – and I’ll share a few pictures of it with you now.