Anyone want the scan results? I thought so. First up, the CT scan showed basically no change. That’s good, we obviously didn’t want anything new popping up on his CT scan. Second, Eli’s MIBG scan showed some real improvement on the bony spots. He still has spots on his knees and spine, but as far as Dr. Modak and I could tell, there were definitely fewer spots on this MIBG scan compared to the one from December 21st. The trip to the MIBG scan Friday morning was an eventful one. We had a lot of rain and high winds in NYC that morning and after Eli and I crossed 72nd Street on York, Eli’s blanket went flying off his lap and started rolling towards the street. I ran over to pick up his blanket, and when I turned around, I saw Eli sprawled out on the sidewalk face down! The wind was so strong it had tipped over his stroller! He was crying (obviously), but was a real trooper and I got him to the hospital so I could clean up his cut chin and bottom lip and get him a band-aid . What a stressful start to the day!
The unfortunate news is that all four bone marrow samples showed positive for Neuroblastoma. 🙁 Last time, you might recall, his front spots showed negative. Turns out that was just a sampling error before since all four showed positive this time. Ideally, the 3F8 protocol works best if the kids are NED and have no bone marrow involvement. Dr. Cheung told me that their success rates with 3F8 was 60%, but that was with kids that entered 3F8 NED. 40% was the success rate for kids entering not NED. We don’t get too caught up in the statistics because obviously if God plans to heal Eli, he has a 100% chance of survival. This is another one of those moments that we are thanking God for leading us to New York. The doctors don’t get worked up when things don’t go exactly as we’d like them to go. On Tuesday, they are going to meet as a team and decide what option they want to pursue. Note: That means they have more than one viable option! It will most likely be 3F8 according to Modak, but the other options include “Hot 3F8” (which is 3F8 that also includes radiation) or MIBG therapy (another radiation option). So, we will know what the plan is on Tuesday!
Kushner told us that if we do 3F8 (or MIBG therapy), we won’t get started until February 11th. Lacey and I looked at each other and knew we were both thinking the same thing. Let’s go home for a week! So Friday night, we picked up a rental car and started towards home. We got about a mile from Avis when the driver side windshield wiper went out during a downpour. I turned around to head back to Avis when what do you know, the passenger side wiper went out! I was literally driving down the Interstate with my head out the window in a downpour in heavy NYC traffic to get back to Avis. What a site we were! So, needless to say, Avis gave us an upgrade (a loaded Hyundai Azera is definitely an upgrade over a basic Ford Taurus). We ended up driving Friday night until about 2am. Our last stop before getting home on Saturday night happened to be in Iowa City of all places. I thought Eli was going to lose it with all of the Hawkeye gear he saw. He finally couldn’t hold it in any longer and before we left, he saw a guy with a Hawkeye jacket walk by and he said, “Mom, should we tell him we don’t like the Hawkeyes?” The guy said, “Excuse me?!?!” That got a giggle. I have to say, Eli’s change in attitude once it sunk in that we were really going “home home” was amazing. We have seen more laughs and giggles and smiles in the last 2 days than we saw in 2 months in New York. It has been fantastic, and I think we all really needed this break! So, please hold all mail and packages this week and don’t send them to the Ronald McDonald House as we won’t be there to pick them up!
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