Hate

Knowing that everyone is most likely praying for Eli this week as he goes through his second cycle of 3F8, I thought I’d give an update regarding the first 2 days. Did I mention before that the pain was excruciating? That fact came screaming back to me (quite literally) yesterday during Eli’s first day of this round after being off for 3 weeks. The really painful part lasted over 35 minutes yesterday! It was pretty bad. Eli found some solace in pinching my arm when he was really hurting. By the end of the administration, my arm looked like it had been attacked by a rabid barn cat. I wasn’t about to complain about a few pinches when I can only imagine how badly he was hurting while the 3F8 was doing it’s thing. Today was slightly better as the bad pain didn’t set in until there was only 5 minutes left of the administration and it lasted a total of about 20 mins. There is typically another 10-15 minutes of discomfort, but the really bad pain we always want to be as short as possible. In truth, we want it to happen because that gives us some comfort that it’s working and he hasn’t developed HAMA.

It blows my mind that we don’t struggle to get Eli to the hospital every day since he knows what is waiting for him. He complains about having to drink the beta glucan, but never complains when the nurse starts putting in the 3F8. I don’t get it. After 3 weeks off, when we started the 3F8 administration yesterday, he immediately remembered all of his “routines” that help him get through the pain. I like my brother’s theory that maybe God gives him peace and reassurance that he can get through it because he is strong, he is being prayed for, and this medicine is helping him get better. We are so thankful that Eli doesn’t struggle with “residual pain” after we come back to the Ronald. After he sleeps off the pain meds and leaves by 5pm or so, he’s ready to play baseball and run around the Ronald until late at night.

We are fortunate to be sharing a room at the clinic with some newly acquired Neuroblastoma friends. Taylor is a two year old girl with Neuroblastoma that is also going through 3F8 this week. The kids like to chat before and after the treatments and its nice being able to go through the experience with the other parents. Taylor is so sweet. Eli SCREAMS and yells through his 3F8 and she just moans and cries softly as she is being held. Every kid handles it a bit differently. Next week, I know that 3 of our friends will be here doing their 3F8. Taylor will be done as most kids do one week at a time (we’re the only ones doing 2 weeks back to back each cycle that I know of). Tony, Kieran, and Brice will all be doing 3F8 next week along with Eli, so we might end up roommates with one of those guys. Kieran is about three and a half months older than Eli and is here this week for scans and tests. He and Eli are getting along REALLY well and were a riot today as they were attacking Kieran’s mom and tying her up. They are actually in the adjoining room to us at the Ronald, which is also nice.
It wouldn’t be a Horn trip to NY without a fun trip somewhere with free tickets, now would it? Anyone care to guess what event Eli and I will be attending tomorrow? Here’s a hint, the season just opened yesterday. We scored two tickets to tomorrow night’s Yankees game! A hot commodity this year since it is the last season that will ever be played at this Yankee Stadium. Next year they will be playing in their brand new (and pretty much identical) stadium across the street. 1923-2008 and we are getting in on the last year! We’re pretty excited since baseball is Eli’s favorite sport. He literally stayed at the clinic LONGER than he needed to yesterday so he could watch the Royals beat the Tigers in extra innings. NBA – check, NHL – check, MLB – check, NFL – pending, MLS – pending. 🙂

As always, thank you for your prayers. We really appreciate them and your encouraging notes are great to read, especially during the tough 3F8 days!