Hello from NYC! I can hear the collective “WHAT?” as most of you read that. Sorry, I am guilty of updating my Facebook status MUCH more frequently than this blog because it’s just so much easier. No excuse, let me catch you up a bit. We have basically been going back to Blank for blood and platelets as Eli has needed them. His counts remained low, even after weeks of nightly GCSF shots. However, they finally started to come up, which has been great news. Dr. Kramer in NYC was starting to contemplate a stem cell rescue, so we were happy to have avoided that. We only have so many saved stem cells, so if we can save them, we’re happy to do so.
Lacey mentioned that she thought Eli could probably be HAMA negative based on what had been happening, so we decided to do a HAMA draw and just send it on to Dr. Cheung’s office. Nobody told us to do the HAMA test, but Lacey thought he could possibly be HAMA negative. It turns out she was right! Since we were coming the week of 2/8 for scans anyway, we decided to just do 3F8s this week as well. Thankfully, Corporate Angels called me on Thursday and said that they had a flight for us with Meredith the next day, so we took off Friday morning on their private jet and thanks to some amazing tailwinds, we were in NYC in record time. We felt right at home of course and enjoyed a typical lunch at Brother Jimmy’s BBQ. Eli is a huge fan of their mashed potatoes and gravy and I absolutely LOVE their shrimp po boys. Kids eat free there, so it’s a pretty darn good place to go eat around here!
After lunch, we took off to hang out with the guys and gals at the Animoto.com Headquarters. It’s a 10 stop Subway ride and about 10 blocks of walking (and by walking, I mean I walk and carry a 39 pound dead weight down the streets of NYC). 🙂 Of course we had a great time and they always treat Eli like a super star. Every time we go, we end up meeting new people because they keep adding to their staff, it’s very cool! Eli played some pictionary, Rock Band, and when I went to go get him to leave, I found him in one of their conference rooms wrestling with one of the Animoto guys, Tom. 🙂
This morning we woke up and just hung out a bit at the Ronald. Eli got to play with his buddy Sam and then Tom from Animoto actually brought his girlfriend Scarlet to the Ronald McDonald House so they could hang out with Eli and see our home away from home. Eli of course was thrilled to get some more wrestling time in and he was able to get his buddies Sam and Ber in on the action and Tom didn’t stand a chance against those three. 🙂
After Tom and Scarlet left, we got to go to the Gazillion Bubbles show with Sam and his mom Linda, NY Grandma Barbara, a new family we got to meet, a family we had met before, and to our surprise, our good friends the Penas that we knew from our time at the Ronald years ago. The Gazillion Bubbles show is an amazing show and I think anyone would really enjoy it, but if you have kids, it’s a ‘must see’. The guy is really a genious with bubbles and has set all kinds of Guinness Records. The kids absolutely love the show and it’s really fun watching them ‘light up’ as millions of bubbles come at them towards the end of the show. I think the title of the show pretty much sums it up. 🙂 Eli’s friend Sam got to go on stage and the two boys even got their picture taken while they were ‘in’ a bubble. There was a spaghetti dinner at the house when we got back and of course a few more hours of the Three Amigos (or Stooges) playing Nintendo DS and Spy Gear games.
So, that catches us up. Ber is heading home tomorrow and Eli’s other buddy Justin is showing up to start a week of 3F8 as well. Eli, Justin and Sam are all doing afternoon 3F8s together, so the 9th floor had better be prepared! I think I heard a rumor that they were beefing up security for this week in case things get out of hand. 🙂 In all seriousness, we haven’t done 3F8 since the end of September 2009, so we are probably in for a bumpy ride. 3F8 is extremely painful, but it tends to be the worst when there has been a long break in between treatments. We’re just thankful to be in a position where Eli can GET another round in. We will be doing scans on Tuesday, Wednesday and Thursday, so this will be a very busy week for us. We don’t have a return flight scheduled yet, but we are hoping that Corporate Angels will be able to hook us up with a return flight with Meredith on Friday night (if they are making the trip). Otherwise we’ll have to figure something else out, but I’m not too worried about it. God always seems to direct even the small details for us.
Thanks in advance for your prayers. Eli and his buddies will once again be enduring a lot of pain this week, so we pray that it is effective and that the week goes by quickly with very limited ‘after’ effects like hives in the throat or ‘tingly’ feet and hands that last for hours after the treatment. Also, since it is scan week as well, we will be praying that Eli’s scans come back ‘clean’ and that he continues to have no evidence of disease.
Oh, thanks to those that have been praying for Eli’s doctor from Blank in Iowa (Dr. Woods). I heard she is at home recovering, but after seeing the pictures of her totalled car, I am convinced the only reason she is still with us is because God knew it wasn’t her time yet. We are thankful for that, but pray that she is able to have a good recovery, and God willing continue to be such a great advocate for our kids at Blank Children’s Hospital.
I will let you know how it goes this week. Thanks for continuing to be there for us. We really appreciate all of the support. I guess we will be rooting for the Colts this weekend. Not really because we care, but I did see that one of the players supports Neuroblastoma research (http://www.allieandfriends.org/). That is good enough reason for me. Sorry, Orlandos, we’ll be thrilled for you if the Saints win, too! 🙂
By the way, I have started to post my camera phone pictures to Facebook via my public blog at http://www.hornit.net, so if you check that site out, you will find some pictures of our time in NYC and you don’t even have to be a member of Facebook. There might be some other IT related posts sprinkled in there as well, but I have found it a very simple way to publish my pictures to two places at once. Enjoy!
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