A quick trip home and back

Ok, I have a confession to make. A LOT has happened in the last 8 days and I haven’t taken the time to let anyone know about it. Let me fill you in. 🙂

As you recall, last Tuesday was Eli’s test dose of 8H9. We did a PET scan that night as well as several Omaya taps (where they pull fluid out of his port in his head). We did PET scans on Wednesday and Thursday as well as Omaya taps. Then on Thursday, the Nurse Practitioner said, “Well, I guess we’ll see you next Thursday for the real dose.” I said, “What? You don’t need us before Thursday? One full week? No bloodwork, nothing?” She said, “Nope, as far as we are concerned, his counts are great right now and we don’t need you back until Thursday.” I immediately went into “get home” mode. I called our hero at Midwest Airlines (B.J.) who was able to get us on a Friday evening flight home (I called her Thursday night) free of charge as usual! We threw out half of the “stuff” we had accumulated here and the rest we packed into 6 boxes and FedExed them home and checked out of the Ronald on Friday afternoon. This was no small feat, but after a long and crazy day, we ended up getting home Friday night/Saturday morning around 3:30am and IN OUR OWN BEDS for the first time since February 9th (when we thought we were coming out for a 2 day trip to NYC). 🙂 It is hard to explain why it is “worth” going home for only 5 days when you’ve been gone for so long, but other families that have been in this situation know exactly why. It is such a morale and energy booster! I’ve said it before, but getting to go home is an important part of the treatment Eli gets. I think the only people that knew we were back home were my friends on Facebook since I sent some quick updates there. 🙂

So this morning, Eli and I jumped on a early morning flight to NYC and were here and checked into our room at the Ronald by lunchtime. Speaking of lunch, Eli’s new “kick” is to go to Brother Jimmy’s BBQ and have their mashed potatoes and gravy. I can’t seem to get away from their Fried Shrimp Po Boy sandwhich, so I get that every time and Eli’s meal is FREE there (all kids eat free with an adult that pays at least $10 for a meal). It’s a little more pricey than our other favorite BBQ place (Dallas BBQ), but if you get a sandwhich, it’s very affordable (very affordable in NYC means Eli and I ate lunch for a total of $17). Eli got a stirring stick there that had their logo on it, which he got a real kick out of. It says, “Put some South in yo mouth.” Needless to say, Eli was saying that all afternoon. While we were at Brother Jimmy’s, Eli asked if we would be in NYC for his next birthday. I said I didn’t know and he said, “I hope so, I want to come to NYC for my birthday.” We are very thankful that Eli doesn’t dread coming here. He has too many friends to play with to not look forward to coming to his second home in NYC!

I wanted to know what Eli’s counts were, so after lunch we went to the clinic and I asked them to do a CBC. It turns out they had some other bloodwork they wanted to do, so I put on his emla (oh yeah, had it in my pocket along with the bandaid) so his port would be numb. We immediately saw some great friends of ours at the hospital (the Atkins) and Eli played with the kids while his emla went to work and I got to chat with Jimmy and Jennifer (fellow believers from Missouri). So I got my second dose of “Brother Jimmy” for the day! 🙂 Their son Trey (www.prayfortrey.com) did an MIBG scan without anesthesia for the first time today and everyone was VERY proud of him. He is three and a half and that puts him in an elite class indeed. 🙂

Eli’s counts were very good today, so we are all set for his big day tomorrow. He will be getting 50ml of 8H9 tomorrow instead of the 2ml he got last week. This is called “the real dose” and he will be so radioactive that I can’t be close to him for more than 30 minutes TOTAL until tomorrow morning. We also can’t go back to the Ronald McDonald House tomorrow night because he will be too radioactive to be around other kids, so Sloan is putting us up in a hotel across the street (free of charge after I had a few conversations with our awesome social worker). Friday morning we will go in so they can draw some fluid from Eli’s Omaya again and we’re done! No PET scans after the “real dose”. Therefore, the “plan” is to fly back home early Saturday morning. Yeah, I said the P word! We should be able to be home until Eli’s full workup of scans, which is scheduled to start July 8th.

So, we would certainly appreciate your prayers tomorrow as Eli gets his “real dose” of 8H9. Thank you for being patient when I’m not updating as frequently as I should be! I will try to update to let everyone know how the 8H9 goes!