Wow, have I really not updated since we arrived here? Ok, shame on me. I guess I’ve been slightly distracted. So let me catch you up. As you know, this is the wicked high dose cytoxin chemo. One would think then that my report would be full of nausea, red urine, and lots of pain medicine. In fact, that’s what we expected, but the reality is that you wouldn’t even know he was getting chemo! It’s very odd considering the last round. Our theory is that doing it so soon after surgery recovery last time didn’t help. Eli’s spirits are great, he hasn’t been nauseous at all, and he’s been spending most of his time in the playroom at Sloan. They keep asking us if we are sure when we refuse the nausea medicine at the end of the day, but he just hasn’t needed it. We’re buckling up for a bumpy neutropenic ride coming up though.
The only difference this round is that they were able to double the amount of Mesna (bladder protecting medicine) since he had such problems with blood in his urine last time. This is actually the first time they have ever increased the amount of Mesna for a patient at Sloan. They talked to a pharmacist that actually told them it would be ok to do it, so they tried it out. They didn’t tell us they were “trying” anything until the second day, but I don’t care, I would have told them to try anything to help his pain when he urinates. So far it’s been much better than last time, but we’ll see if it progresses and gets worse like last time. The chemo is now disconnected and as soon as they have reports back on his electrolytes, we’re free to go (on the hydration back pack of course). We’ll check back in on Monday after having him on fluids all weekend and see how his counts are. Remember, his counts should take a NOSE DIVE and he’ll be very neutropenic. We’re not coming home to Iowa for this, we’ll stay in NY and let them treat him through neutropenia and then do scans to see how much of the disease is left and if his bone marrow is clear.
The Ronald McDonald House has had really nice dinners the last few nights. One night was a Winter Wonderland Dinner and they even had presents for the kids. It has started already. I’ve heard the two biggest holidays around here are Halloween and Christmas. Today’s craft was making some dreidel door hanger and there was a massive menorah in the playroom, so you can tell what the other majorly celebrated holiday is here. 🙂 I’d guess one third to one half of the people we see in the hospital will be celebrating Chanukah.
We went over to Stewart and Barbara’s house for dinner the other night and they ordered Chinese from 6 Heaven. We had dumplings, spare ribs, shrimp lo mein, sesame chicken, and spicy chicken with green beans. It was all very good. It also came with brown rice, which we had never had before and I would say I prefer over white rice (although overall I’m not much of a rice connoisseur). I’m sure there are about 1.3 million Chinese restaurants in New York, so if you see 6 Heaven on the list, we’d say do it!
Have you seen the Visitor Map on the front page of Eli’s CarePage? It shows a map of the 100 most recent US visitors. If you click on “add your name”, it’ll show who you are, when you last visited, and how many times you’ve visited. Check it out, it’s cool!
I’ll leave you with an Eli quote and a link to leave him a voicemail (he started asking me again out of the blue if he had any new voicemails). This morning I picked him up out of bed and something fell on the floor. He looked at me & said, “Well that was genius.” He has his parents’ sarcasm. 🙂