Two weeks in NY without an update? Yikes! Honestly, there hasn’t been much medically going on besides waiting for counts to come up. In my last post, I mentioned that we were hoping we could bump up Eli’s chemo week. As it turns out, the rise was 100% due to the GCSF shot we gave him and when we redid the counts several days later, he was neutropenic again (we were hoping he was on the rise on his own as well). So much for our argument that he could start chemo a week sooner. 🙂 So, we are still on for high dose irinotecan and high dose temodar starting tomorrow (Monday the 27th). It will be 5 days and they are expecting him to have a rough time with diarrhea and nausea. They are also expecting his blood counts to crash through the floor, perhaps to the point where we need to use harvested stem cells to get them to come back up. I really hope this isn’t the case, I remember the last time he was neutropenic for so long that they were about to give him some of his old stem cells and that morning the counts started coming back up on their own. That was a VERY long inpatient stay! It would be really nice if this was the last chemo round Eli ever has to have. It has nasty side effects both immediately and long term. Your prayers this week will be very much appreciated. Once he has recovered from this round of chemo (which will take a few weeks), we will be ready for the 8H9 antibody, which is administered through his new port in the head. I’ll give more details about that later.
So, besides going in for blood counts, we have been keeping busy with things to do in NYC (surprise, surprise, right?) One day we went to the Science Center in Queens and had a fun time there. We were also able to see a very exciting Yankess game during Opening Week (Jeter hit a home run in the bottom of the 8th to win the game) and a great Mets game the other night. We are definitely more Mets fans than Yankees fans, but both stadiums were brand new this year and are amazing. Yankee Stadium has the largest HDTV in the world at 103’x58′! Our seats at Citi Field were in a luxury suite behind home plate and the Mets won that game, so that was a great night!
We also snuck away for a few days to the Outer Banks in NC for a long weekend. We met with a few other families that we have grown close to over the past few years. Trey Atkins is a Neuroblastoma warrior from Missouri (who brought his 2 brothers and 4 sisters) and Griffin Schager is a Rhabdomyosarcoma warrior from Virginia Beach. We all stayed in a 9 bedroom vacation house in Corolla, NC and it was phenomenal. My cousin Dani, whose husband was deployed to sea with the Navy yesterday, came down to visit for a few hours as well, which was really nice since we hadn’t seen her for a few years. Even though it was only for the weekend, it was an amazing time to hang out with some great friends and let the kids play together on the beach and in an amazing house. We were also able to visit the Naval Base in Virginia Beach since Griffin’s dad is a Commander in the US Navy. It was VERY cool to be surrounded by $55 Million dollar fighter jets and amazing military men and women of the US Navy. We even got to check out a flight simulator that the Navy uses to train their pilots and we got to try our hand at landing a jet on a carrier. Wow, talk about difficult! Lou had me try on his flight suit, which I’m pretty sure was just his way of telling me I need to lose some weight. I think I stretched it out nicely for him.
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We had to get back to NYC for counts and sure enough, they had dropped a bit, but just above being neutropenic. Of course I posted pictures from each of these events, just click on the thumbnails below:
Also, I continue to update the NYC album, so keep checking on this one as well (the newer stuff is at the bottom of the album):
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Again, we could really use your prayers this week as Eli goes through a rough week of chemo. Just another critical step in conquering this nasty Neuroblastoma. Thanks for all of your support. Don’t forget to check out the St. Baldrick’s event going on in Ames that is raising money for pediatric cancer research in Eli’s honor and in honor of several other Iowa cancer kids. If you want to see a brave woman shave her head, plan on being in Ames on May 16th! 🙂 Also, Brian is shaving for Amanda and we’re excited that another Cornerstone Church member is shaving his head for Eli and has done a great job of fundraising (thanks, Mark!) http://www.stbaldricks.org/events/event_info.php?EventKey=2009-2248
PS, thanks for leaving Eli voicemails. He has been enjoying listening to them. You can always find the button to leave him one by going to http://voicemail.elihorn.com or just www.elihorn.com!
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