I don’t even know how to begin this update. Maybe I will just dive right in…
As I mentioned before, the team was going to meet on Tues to decide what the next step would be for Eli then call and let us know. The expectation was that we’d be doing 3F8, which meant that Eli had to start this new GMCSF shot Wednesday (today) so he would be ready to start the 3F8 on Mon the 11th. I hadn’t heard from the team by 6:30pm last night, so I called and talked to someone on call who put me in touch with Kushner. Kushner said, “We decided we should do 3F8.” I asked him if they overnighted the shot to us, but of course they hadn’t! Kushner said that if Eli couldn’t get the shot on Wed, that we’d have to delay his 3F8 a week. I asked him if I could just come to NY on Wed morning and pick it up, and he said he didn’t know, he’d have to have me talk to the nurse practitioner in the morning. However, we knew this would be too late as bad weather was coming in and that there was a good chance flights would be canceled or delayed in the morning in DSM.
So, we decided that I should drive to a location that wasn’t having bad weather so I could fly from there to NYC in the morning to pick up the GMCSF and then to DSM that night to get the shot to Eli. I just knew that if I tried to fly to NYC from DSM in the morning, the flight would be canceled and I’d lose my opportunity to get there in time (by the way, we checked the 6am flight to NYC from DSM this morning and it left on time just fine). 🙂 We just couldn’t fathom the idea of telling Eli he had to get in a car and head back to NYC to get his shot there when I could just bring the medicine back home and give it to him here. I have great friends that wouldn’t let me drive in the terrible road conditions all night by myself, so Jeremy and Matt and I jumped in Jeremy’s 4WD Jeep at 10pm and started heading East towards Columbus, OH where we knew I could catch a flight to NYC at 11am and then a night flight back to DSM the same day. After it took us 5 hours to get to the Illinois border, we started doing the math and realized that there was no way we would reach the Columbus airport by 11am. So I called American Airlines and changed my departure city to St. Louis, which we could reach in time for a 10am flight. We pulled into St. Louis around 7am, which was just when the nurse practitioners were getting into the office in NY. That’s when things went south. After spending 2 hrs on the phone with the insurance company and the nurse practitioners, I came up empty handed.
It turns out that the GMCSF is actually in very short supply (long story) and nobody has it except a few places (Sloan being one of them). However, insurance wouldn’t allow Sloan to actually give out the medicine, it had to be administered AT SLOAN which meant that Eli would need to get the shot in NYC, I wasn’t allowed to bring the medicine home! If I wanted to take it home, I’d have to get it from CareMark, and of course they didn’t have any. I asked Dr. Kushner if we could just start the shot on Thursday and still start 3F8 on Monday, but he didn’t want Eli to miss a dose of GMCSF, so he said we would need to start the GMCSF in New York on the 13th and start 3F8 on the 18th instead of the 11th. Grrrrr. Apparently they had already decided this should be our timeline and was never planning on Eli starting 3F8 on the 11th, despite what they told us last week.
So, I called AA and they actually gave me a full refund on my ticket. We made our way back to Ames via Kansas City so we didn’t get stuck on a 100% covered Interstate 80. We arrived sometime around 6pm, which put us at about 36 hours of no sleep after about 20 hours of driving nearly nonstop. I’m guessing this is the kind of adventure you have come to expect from the Horns, so I doubt anyone is surprised. If nothing else, we had a great road trip and another fun story to tell!
Don’t forget that Eli’s birthday party is tomorrow! Click Next to see the invite!