Scans

Just a quick note to let everyone know that Eli’s next set of scans are set for next Tuesday and Wednesday (11/24 and 11/25) in Manhattan. If all goes well, we will be getting a free flight to NYC on a Corporate Jet with Meredith Corporation, which would be fantastic if it all works out, but it will be a little stressful since we would be flying in on Tuesday and flying home on Wednesday (the days of the scans). However, planning travel on Thanksgiving weekend isn’t exactly easy, so we are thankful for whatever we can get! This is our first attempt at using Corporate Angels for flights, and so far I’m impressed with their organization. Unfortunately, flights weren’t available through our normal outlet (Midwest Airlines).

We asked the doctors in NYC about Rituxan and they told us that Eli’s HAMA level (while still positive) is dropping, so they aren’t so sure that he will need Rituxan and that he might go HAMA negative soon on his own. We are going to go ahead and have his HAMA test done again next Tuesday, so we will know if it’s continuing to fall or if we need to try Rituxan. The scans next week are the normal 3 month workups. Of course, scanxiety will be at its finest as we get MRIs, bone marrows, CT, MIBG, and urine tests done. We are obviously hoping and praying that everything comes back NED (no evidence of disease). Eli’s 42 days of oral temodar ends next Tuesday, so we will be starting up Accutane (the teenage acne medicine that is given at an insanely high dose and causes some “mood” issues in kids as well as really dry skin). We will continue to alternate the Accutane with the oral temodar for several cycles and of course continue 3F8 treatments whenever he is HAMA negative.

Thank you for your praying for our flights to work out and for Eli’s scans to go well. We will update again after scans (we might not update from NYC since it will be such a fast whirlwind trip, but we will let you know what we find out as the results come in).

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