Well, Eli’s fifth and final 3F8 infusion for the week is complete! There is always a sense of relief around the clinic on Friday’s from the 3F8 parents. A reprieve from the torturous treatment is always very welcome by everyone. It has definitely been a different week than usual. In most of Eli’s previous rounds, the beginning of the week was terrible and things got a little better as the week went on. This time, Thursday and Friday were probably two of his worst days (pain wise). Also, Eli has been feeling good and wanting to play every single night this week. Usually he is barely conscious at night on Monday and Tuesday, so that is something I’m certainly not complaining about. As usual, his feet have been hurting him every night, but not as bad as before since we kept up with the Neurontin drugs that are supposed to minimize those side affects. A few hot packs on his feet strapped on with some Coban and he’s good to go. 🙂 Once we got some Codine to help minimize the coughing, he didn’t have any other problems with it. Go figure, once you are prepared, you don’t need it. Today Eli had coughing hives, but he had already had Benadryl and Visterill. He said, “We could do a nebulizer treatment.” 🙂 That’s just what we did, but I’m afraid it didn’t help all that much. Eli had several days of “Angelina Jolie” lips where the hives on, around, and in his mouth caused his lips to swell up to 4 times their normal size. Thankfully they return to normal relatively quickly.
As usual, we tried to keep entertained this week with fun things to do. Most nights included play time with Sam and Ben. Wednesday night we enjoyed a great night at Citi Field to watch the Mets play the Marlins with Eli’s buddy Kieran who was here for scans and my cousins from Virginia Beach who came up for a spur of the moment mini-vacation. They got a tour of the Ronald McDonald House and got to experience Eli’s favorite Chinese restaurant (Six Happiness) before taking off for the game. It was the most beautiful night for a baseball game that I have ever experienced. I’m still in awe at how “free” tickets to a Mets came can end up costing me $82, but I suppose it has to do with the purchase of the food, the hat, the shirt, the ball, and the subway tickets. 🙂 The Mets were down 6 to 1 and they ended up tying it in the 8th, which was really exciting, but then lost in the 10th inning. Regardless, I still think it was one of my favorite Mets games of all time (and we’ve been to a lot)! Thanks for visiting us, Jonathan and Dani!
We weren’t able to get a free flight home from Corporate Angels or Midwest Airlines, so I started shopping for flights. Tickets to Des Moines were going to be $700 for Eli and I, which didn’t sound too appealing. I tried Kansas City, Omaha, and Minneapolis, but they were all the same price. I tried to get a great deal with Priceline, but they best they offered me was a discount to $550. Then it hit me. People fly from NYC to Chicago all of the time and Chicago is only five and a half hours from Ames. Surely they have affordable nonstop flights to Chicago from New York! As it turns out, I was able to get two one way tickets from NYC to Chicago for $240. I also got a 4 star Hyatt hotel on Priceline for $41 plus tax, so Lacey and Isaiah are going to come out and meet us in Chicago for some Legoland and Shedd Aquarium fun before heading home Sunday afternoon. All for less than it would have cost to fly to Des Moines!
Thank you for all of your prayers this week. We would appreciate it if you would keep them coming as we figure out the next steps for Eli since this was his last round of 3F8 for the protocol he is on. I am getting the feeling that the doctors aren’t going to be easy to convince to allow us to do more rounds of 3F8, but of course being “done” with 3F8 treatment is a little nerve wracking for Lacey and I to say the least. At least we know that God has everything under control and we can trust in His plan, which is a perfect plan. For now, the next step is another two weeks of Accutane and likely low dose Temodar chemo after that. Our next set of scans are scheduled for May 17th and 18th, so we’ll be back in NYC then!
Here are some photos from this trip:
Facebook
Twitter