Back in NYC

Well, we are back in NYC! With the exception of a few delays, the trip yesterday was pretty uneventful and we arrived safe and sound in this all too familiar city. Eli looked out of the plane window and said, “Yep, all of those buildings are pretty familiar.” 🙂 He of course ran into the Ronald McDonald House like he owned the place and made his presence known to everyone. We were able to score a room on the third floor where Justin and Dakota were and now Eli’s buddy Cheyne (cp: WeLoveCheyne) is also staying. I think the grandpa across the hall that puts his granddaughter to bed at 8:30pm isn’t impressed with this floor, but we are sure happy about it! 🙂

Today we wandered into the hospital around 12:30pm and got Eli’s port accessed to get some blood drawn. His counts have been very good, but his platelets have been steadily falling. Today they were at 95. We are hoping they stay above 50 since that is what the 8H9 protocol calls for. Eli had a quick MIBG injection at 2:30pm, we did a urine collection for VMA/HVA tests, and then did a brain MRI at 5:30pm. Tomorrow we have the MIBG scan at 8am, bone marrows at 1pm, and then a spine MRI. After that, we are done with scans (we did the CT scan last month). I haven’t talked to Dr. Kramer about it yet, but one of the Nurse Practicioners thought we could do Eli’s test dose of 8H9 next week and the real dose of 8H9 the week following. Then we would potentially be free to go home to let his counts recover again for a few weeks. That would be a great schedule if it actually works out that way! We should know more tomorrow I think. That also depends on scans being good this week!

We had a great time being home over the past several weeks. Especially for the fourth of July. A holiday we have been “inpatient” at the hospital for over the past two years (last year we were inpatient in NYC with bowel obstruction issues and the year before that we were starting chemo in Iowa City). On the third of July we went to an I-Cubs game with some friends. It was delayed an hour by rain and was pretty wet, but the fireworks afterwards were fantastic. During the game, a ball came right for Eli’s head and someone behind us caught it and gave it to Eli. Thank goodness it didn’t hit his Omaya port in his head, we might have ended up in the hospital for a third fourth of July in a row! 🙂

Ok, I need to do a better job of refereeing Eli and Justin playing. It is 10:40pm and they are running around a million miles an hour. They just took their shirts off to look like boxers and I just heard one of them say, “I’ll punch you right in the port,” and the other one replied, “Want me to show you how hard I can punch?” You really have to watch these two sometimes. 🙂

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