So we made it out to NYC and back for our two days of scans (last Monday and Tuesday) as scheduled. Meredith Corporation was able to fly us out Friday morning, which is always a blessing. We had fun over the weekend and got to play with some of Eli’s friends, did a street fair, went to Toys R Us in Times Square, and hit up a few parks. On Monday and Tuesday, we had two very full days of scans. CT, MRI of the head, MRI of the spine, MIBG, and bone marrow biopsies. I am pleased to say, and if you are a friend on Facebook or check Eli’s Twitter page (www.twitter.com/elihorn) you already know this, the MIBG, MRIs, and CT came back NED (no evidence of disease). We haven’t heard about the urine test or the bone marrows yet (the bone marrows take a while to come back), but the CT/MRI/MIBG scans being clear is obviously fantastic.
Eli’s bone marrows were supposed to be at 11:20am on Tuesday. They rushed us back there at 11:15am because “they were ready for us”. We slowly discovered over the next hour and a half that they weren’t “ready” for us at all. Since it requires anethesia, Eli couldn’t have anything to eat all morning, so he was pretty hungry (as was I since I ’empathy starve’ with him). I have no doubt that the doctors stepped out for lunch while we were waiting. In fact, I’m pretty sure the anesthesiologist was still picking her sandwich out of her teeth when we finally walked into the procedure room. Eli pointed out to her that he had been waiting for hours and she faked some sympathy for him. While the anesthesiologist was hooking up to Eli’s port access, Dr. Kushner said to me, “So did you do the MIBG?” I said, “Yep.” He then replied, “So how did it look?” I laughed and said, “YOU are supposed to tell ME that, aren’t you?” He smiled and then I said, “But of course you know I looked, I thought it looked good.” He laughed and said, “See, I knew you’d look. That’s great, I’m glad it looks good, that’s one less thing I have to worry about doing today.” Dr. Kushner is actually quite a funny guy if you get his humor. I found out that his brother in law runs the CHOP hospital in Philadelphia, which is another big Neuroblastoma hospital out East. During Eli’s bone marrow procedure, I was able to hang out with Shirley Staples, who lives in Brooklyn and organizes the huge Kids Walk for Kids with Cancer event in Central Park each May. Her son, Simon, is a teenager and an 11 year survivor. She had some fantastic stories about “the good old days” of 3F8 (Simon was the first to complete the 2 year protocol). She also raises a LOT of money each year for Dr. Cheung to use for his projects at MSKCC.
Eli had a great time catching up with some of his buddies in NYC. He played lots of Uno with Dakota, spent some quality park time with Ber, saw his buddy Jonathan again for the first time in a long time, played frisbee with Dominic, met a new friend Jensen and once again received great gifts from Chloe who is always thinking about Eli. Of course we also got to spend some quality time with NYC Grandma Barbara with Stewart and James.
I was able to get a one way flight back from NYC to Des Moines for a similar price to what we flew to Chicago for last time, so that was nice not to have to do any driving. Eli was not very happy about having to take TWO airplanes and go through an airport. Can you say spoiled? 🙂 I can’t say I blame him, I’m just as spoiled as he is by Meredith’s learjet. For my NYC Ronald McDonald House friends, if you need to get to Newark airport (where most flights are often cheaper), I scheduled Go NYC Airlink (http://www.goairlinkshuttle.com/) the day before we needed to leave and was able to get a ride from the Ronald to Newark airport for $16 (Eli was free). It’s by far the cheapest and most convenient way to get to Newark (unless you have a way to get there for free from someone). The only downfall was that they insisted on picking us up at 6:50am for a 10:25am flight, so we were at the airport 2.5 hours before take off. Thankfully we found seats by a power outlet and Eli spent that time watching Fantastic Mr. Fox on my netbook.
The day after we got home, Eli went to school and we made our transition from NYC life to Iowa life. Eli’s counts are still really low, although starting to make a slow climb upward as of yesterday’s counts. I have been posting Eli’s counts on his Twitter page. I have also embedded his Twitter updates into his website, so if you go to www.elihorn.com, you’ll see the updates there as well. Want to get the twitter updates via e-mail? Just go to http://www.feedmyinbox.com and give it your email address and this website: http://twitter.com/statuses/user_timeline/139533223.rss Then you’ll get one email every day that I update Eli’s Twitter account and you won’t have to keep visiting his website or Twitter page to check for updates.
That’s it for now. You can check out a few pics of our trip to NYC here:
Please pray that Eli’s counts will start to come up and that we’ll get some direction on what to do next. We suggested to the doctors that we do Eli’s last round of Accutane (8H9 protocol calls for 6 rounds and he has had 5) and then do more 3F8 since he is HAMA negative. They haven’t replied yet, but I suspect they will push back on the 3F8 suggestion and want to continue the Temodar at some point (something we aren’t willing to do if his counts are low). So, it’s a waiting game at this point for the next steps, but we will keep you informed! Thanks to everyone for all of the prayers. Please keep our friend Taylor Love (cp: taylorgram) in prayer as well. She is NED, but they have discovered that she may have leukemia, which was caused by all of the chemo she has had. If it turns out that is the case, she will need a transplant. It’s a scary thing and something that a lot of our little friends (including Eli) are at risk of since they have had so much chemo.
Facebook
Twitter