Activities

I hope everyone had a good weekend. Last week went well and we are officially done with the protocol that Eli was on (four rounds of two week 3F8 with beta glucan)! The scans we are now doing will help determine whether or not we can move on to the one week 3F8 with the GMCSF shot or if we will do another four rounds of two week 3F8 with beta glucan. All this assuming Eli is still HAMA negative, of course.

Friday night we went on a trip with the Ronald McDonald House to the 20th precinct. It started with a boat ride in the Harbor Police boat to the Statue of Liberty, which was a first for us. We then went to the precinct where they had all sorts of fun things for the kids to check out. A police motorcycle, a police car, police horses, police dogs, a bomb robot, and riot gear for the kids to wear. All of that, plus a great BBQ dinner. It was really neat and all of the kids were having a great time running from activity to activity. I Animotoed it of course, and yes, I just used Animoto.com as a verb:

Saturday morning we did an MIBG scan and that went really well. Eli doesn’t need anesthesia because he is so good at holding very still for each of the two 27 minute bone scans. Here is a picture of Eli strapped onto the MIBG bench:

From Eli's Battle

Since we had an MIBG scan on Saturday morning, we missed out on a Ronald McDonald House trip to Fire Island for a day at the beach, so instead we treated Eli to a movie (Kung Fu Panda). We all loved the movie and that night we had a nice BBQ dinner out on the third floor patio. Here’s a quick food review: avoid the pasta at Piazza, but the Ceaser Salad and Gyros are great. 🙂

Today was another first for us. We went to Madison Square Garden and watched a WNBA game! The New York Liberty team absolutely pounded last year’s WNBA champs, the Phoenix Mercury. Phoenix couldn’t hit a shot with a final FG percentage of 32 to the Liberty’s 54%. The final score was 105 to 70, a new franchise record for the Liberty. We were treated to snacks and poster making before the game, food during the game, a few gift bags with hats and such, and the opportunity to meet a few players and take a few shots on the court (which of course Eli turned down). We were really glad we went because the game was really fun and Eli really seemed to enjoy it.

Monday (tomorrow) Eli has bone marrow biopsies, but they have delayed our stem cell harvest until next week, so there will be no temporary line insertion until the following Monday. The reason for the delay is because they couldn’t get us into the harvest room until the middle of the week. If we need more than 2 or 3 days to collect, we’ll be out of luck because the weekend will throw off our window of opportunity. So they’ll do it next week when they can have the full week to collect. We’re going to try to get a dentist appointment scheduled ASAP as Eli’s teeth are hurting him nearly every day now. At least two of them are rotted out to the point that the dentist originally told us they’d have to remove them completely.

That’s it for now. Thank you for your continued prayers!