Today was our setup day for radiation and everyone was in a quandary because he was supposed to start radiation next week with his abdomen and his legs, but now that his legs are showing up NB free, they didn’t know whether to radiate them or not. The radiologist said she would probably radiate them unless the NB team disagreed. Dr. Modak (the one in charge of Eli’s 3F8 protocol) did disagree and didn’t want to radiate his legs unless there was evidence that there was NB there. So the plans changed and next week we will be doing radiation to his abdomen only. It will be twice a day every day next week. Once around 8:30am, and then again 6 hours later at 2:30pm. We will do that for 7 days (so all next week and then two days the following week). Eli did a good job during his radiation setup today. He was a little bit scared, but fell asleep on the table pretty quickly, so he cruised through the whole thing. All he has to do is lay still while they radiate his abdomen. Should take about 15 minutes from start to finish while the actual radiation time will be less than 2 minutes.
Ok, so enough about the real reason why we are here and I’ll give a quick update on the peripheral stuff that happens in NYC. Last weekend we spent a very short amount of time at the Bronx Zoo. We took the Subway and found it very ‘interesting’ to be walking several blocks through the Bronx to get to the zoo. Let’s just say we completely looked out of place there. Nothing exciting happened, the before promised Subway story is yet to come. We also walked to the other side of Manhattan on Sunday to check out a “Hippo Park” which is a playground with a lot of Hippo statues that the kids can play on. It was a 6 mile walk round trip, but was well worth it. Eli loved the park and Lacey and I really enjoyed the walk. On the walk back, we stopped in the Museum of Natural History for about an hour since Eli wanted to see the water exhibit and we have a membership so it didn’t cost us anything.
This week, we ended up going to Central Park every day (except today) after scans. The weather has been phenomenal, so how can we pass up a walk through Central Park? Monday, New York Grandma Barbara took us to meet the great police officers that shaved their head in honor of Eli to raise money for St. Baldrick’s Pediatric Cancer Research. They had pictures of him up in their roll call room and everything. Afterwards, one of the officers escorted us to the carousel where we met the owner (Sal) and he told us that Eli could come anytime, free of charge. We also found out that the carousel owner’s son had been diagnosed with Neuroblastoma 14 years ago at 2 years of age and Dr. LaQuaglia did the surgery! Eli got a free Central Park Carousel shirt from Sal, which he thought was really cool.
On Thursday, we had lunch with a couple that has recently moved to Manhattan (right by the Museum of Natural History) that went to Cornerstone, our church in Ames! It was really fun hanging out with them and seeing their apartment. They have a beautiful Newfoundland dog that Eli just loved. We all walked through Central Park after lunch and even went back to the carousel where Sal introduced Eli to his now 16 year old son Daniel. Of course we got a free ride while we were there as well.
Click “Older” for Part 3:
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