Well, we THOUGHT this was going to be our shortest trip to NYC ever! We arrived 2 hours late thanks to a delay in Milwaukee, but since we didn’t have anything scheduled until Tuesday, there was no rush. We did stop in on Monday to pick up Eli’s CT contrast, SSKI drops, and urine collection kit. We saw Eli’s buddy Justin in the playroom and so even though we didn’t NEED to be there, we spent some time hanging out in the hospital playroom. Monday night Eli got to play with his buddy Justin and they certainly made up for lost time apart. Unfortunately, Justin got a fever on Tuesday and the boys didn’t get to see each other the rest of our trip, so I’m glad they got the chance Monday night.
Tuesday was our first official day. We started out with getting accessed and having a HAMA draw. Eli then did an MRI of the head, which he just slept through. We got to enjoy spending some time with Barbara and Stewart yesterday afternoon before heading back to the hospital for a quick MIBG injection (they inject radioactive material into his port the day before his MIBG scan). Last night, we went to a big annual fundraiser called “Skate with the Greats” which is a partnership with the Ronald McDonald House and the NY Rangers. The players (past and present) are there and they have a live and silent auction to raise money for the House. It was really fancy and really fun. It was at the Rockefeller Center ice skating rink. Our last experience with ice skating last year in Central Park did not go well at all. Eli was out on the ice for about 30 seconds before deciding he hated it. Last night was 180 degrees different! He and I went out on the ice and went around the rink twice before taking a break. He went back out again with a great House volunteer named Jef and was caught on Madison Square Garden television hanging out with the Rangers in the middle of the rink. The funny thing about Eli and famous athletes is that, unless they are Iowa State Cyclone football players, he really doesn’t care about meeting them. The Iowa Hawkeye football team was at Dance Marathon signing autographs and he didn’t want to have anything to do with them. That’s my boy! 🙂 He wanted to go skating a third time, but just as we were getting skates again, they announced that they were closing it down. He was bummed, but happy that he got to go twice and was excited to learn that he can ice skate in Iowa, too!
This morning, Eli had to get up and start drinking his CT contrast at 7am to finish by 7:20am. He did great (Lemonade for the win) and basically slept through his entire CT scan. We went to do his MIBG scan after that and once again, the warm blanket and having to hold still made him very sleepy and he slept through all but the last 15 minutes of that really long scan (he doesn’t like this one because it has screens that come really close to his face). The MIBG is a really good scan that shows any Neuroblastoma activity pretty clearly. The final event was the bone marrow biopsy. We didn’t have to wait long and he was in a very good mood while we waited. I told him that Dr. Kramer was doing his bone marrows today and he said, “What? But she is a girl! Shouldn’t Dr. LaQuaglia be doing it?” The puzzled look on his face was priceless and I was dying laughing. I remember having the same confusion when I saw my friend’s mom driving a combine to the field when I was about Eli’s age. Yes kids, girls can drive tractors AND perform bone marrow biopsies. 🙂
We were walking out of our room with our luggage so we could check out of the Ronald and my cell phone rang. It was Dr. Kramer from Sloan. She told me that there was a spot on his brain that showed up on his MRI. My heart stopped. She said it was very faint and very small (maybe a few millimeters), but that it was definitely something new that wasn’t there on the last scan. SO, I walked right back in the room (room 512 for those that like to know) and unpacked our stuff. We are going to do a spinal MRI tomorrow as well as a spinal tap. Those two things should provide immediate results. If they show that it is Neuroblastoma, then they will decide what action to take, which would likely include radiation, chemo, and possibly a different antibody treatment called 8H9 that is administered into a port in the head. However, this is all speculation since we don’t even know what it is yet. If the two tests tomorrow don’t lead them to believe that it is Neuroblastoma, they will have to do a biopsy next week to try to figure out what it is. It is kind of odd that the slightly more comforting scenario would be for Eli to be having a biopsy of a spot on his brain next week. Needless to say, this wasn’t the news that Lacey and I were expecting to get. It’s always a possibility, but you just live from scan to scan hoping to get a clean bill of health every time. Frustratingly, they didn’t get Eli’s bloodwork in on time for yesterday’s HAMA day, so it will have to wait until next Tuesday to get tested. That’s when we will find out if Eli is HAMA positive or not. It is secondary at this point though, because we now need to focus on this new spot and how to address it.
We are doing our best to just lay all of our fears out before God and allow Him to do His work. I will certainly post an update once we have more answers. Dr. Kramer said we should get results right away, so by Friday we should have a better picture as to what we might do to address this. Eli’s birthday is Sunday, so we will likely be having a party for him here at the Ronald, which he’ll really enjoy. We have always counted on you all for prayers, so we know you will continue to lift Eli up in your prayers. Thank you for being such a great support to us! I will try to post again tomorrow or Friday when I know more.
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