Well, with two days of treatment down, I thought I should do a proper update. Yesterday and today went just about as expected. Eli had a lot of pain, but was able to yell/chant/rock his way through it. For those that are new readers, the 3F8 treatment that Eli gets highlights any neuroblastoma cells so that his own white blood cells can attack and kill them. Unfortunately, it also highlights his nerve endings, so his white blood cells attack those as well, making it an extremely painful treatment. One difference this time around is that he hasn’t been requesting hot packs for his stomach or for his feet. Even when we are back at the Ronald McDonald House, he doesn’t need anything on his feet. He is taking a medicine to help reduce that pain (Neurontin), so it must be working better than we expected it would this time! We are on afternoon 3F8, so Eli starts treatment around 1-2pm and then sleeps until 9 or 10pm and is up for another couple of hours playing games on his iPod or watching movies and eating a late night dinner. He is puffy from the treatment, but thankfully the hives have been minimal/non existent this time so far.
If Eli stays HAMA negative (meaning his body doesn’t develop an immunity to the treatment), we will be back in August. We already have his scan schedule, so we will do scans August 18th-20th and then 3F8 round 16 would be August 23rd-27th. We haven’t talked about the future plans in depth with the doctors yet, but my prediction is that they’ll let us do 2 more rounds of 3F8 after this one and then cut us off. At some point, you have to stop treatment, but obviously that’s a very nerve wracking time for us as parents! They want to get him back on a low dose chemo called Temodar, which was part of his 8H9 protocol (when he had the tumor removed from his brain), but his counts haven’t been good enough to do that yet. So we try to just take things one step at a time.
So for those that like to get the medical news and then move on, you can stop reading. 🙂 For those that like to live vicariously through our adventures in NYC and beyond, I’ll try to fill you in. First of all, we were able to take our first family vacation since Eli was diagnosed in June of 2007. For those that have followed this site for a while, that might be hard to believe since we’ve done so many things as a family, but we hadn’t really taken our own family vacation since before Isaiah was born! With a break in between NYC trips, we decided to head out to Colorado for a week. We did some Googling and came up with the YMCA of the Rockies in Estes Park, Colorado. It is an unbelievable place, and if you have kids and enjoy the mountains, we STRONGLY recommend you check it out (http://www.ymcarockies.org). They have LOTS of activities (most of which are included in your stay) and are very close to Estes Park, where you can find even more fun things to do. We went swimming, went to a rodeo, saw a movie (Despicable Me, which was great), went on a horse pulled hayrack ride to a marshmallow roast, and did lots and lots of hiking. The boys did a great job hiking and seemed to get stronger and walk further every day that we were there. On one trip, Eli trekked 4 miles without having to be carried once, which is a lot for a kid who doesn’t like to walk 2 blocks in NYC! I of course made an Animoto.com video that you can check out here: http://animoto.com/play/jOPo559r01kTR0FDze4ASg?autostart=true#
Speaking of Animoto, we got to see the Animoto.com guys in NYC on Friday! I contacted the crew and asked them if we could stop by their office sometime before treatment started and they just so happened to be planning an office get together Friday afternoon. The families of the employees showed up, so there were kids for Eli to play with (besides the big kids – aka the Animoto employees), and they gave us some new Animoto shirts. Not only that, but they also hooked us up with a pair of tickets to see The Lion King on Broadway! They had some extra tickets because a contest winner couldn’t use them, so they offered them to Eli and I. I said, “Well, shouldn’t you offer them to your people first?” Their response was, “You are our people.” Have I mentioned how cool these guys are before? I think I have. 🙂 So after we left the Animoto office, we took the 1 train up to Times Square and hung out for an hour before it was time for the show. If you haven’t seen the Broadway production of The Lion King, you really need to. It’s not just for kids, it’s a fantastic show. I know it travels around, so if it comes to a town near you, check it out. It was awesome! When we got out of the show at 10:30pm, Eli was hungry (big shocker). We pushed through the thousands of people in Times Square and made our way into a Bubba Gumps, but the wait for 2 people was 45 minutes! So we went to the big McDonalds (where the wait was still 15 minutes at least) and grabbed something to eat before taking the train further north and then grabbing the last Crosstown bus at midnight to bring us back towards the Ronald McDonald House. It was a very long, but very awesome day.
The next day, Saturday, the House was taking another trip to Dorney Park in PA, so we went there and enjoyed the water park in the 92 degree sun along with Eli’s buddy Dominic from VA. Eli was also able to play briefly with his buddy Dakota (cp: DakotaJadeNeblock) from IA and his buddy Cheyne (cp: WeloveCheyne) and his brother Josh from PA before they left for home. On Sunday, Eli and I walked to FAO Schwarz to do some shopping and then hung out with the Zobian family for a bit (who might as well be the Horn family at this point).
Thanks to everyone for your prayers. It never ceases to amaze us that so many people are still following Eli’s CarePage after so many years. Thank you so much! Hopefully the rest of this week goes really well and we’ll back home in Iowa again soon!
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