Counts are rising!

Well, I haven’t updated much in the last week because there hasn’t been all that much to tell. Eli’s counts continued to be down and he needed periodic transfusions (red blood and platelets). However, things have officially started to head upward this week! Eli’s white blood count today was 1.9, his red blood was 9.2, his ANC was .7 (no longer neutropenic), and his platelets were 31 (after yesterday’s transfusion since he was 6 after the weekend). Sorry to everyone who has no idea what those counts mean, but our cancer families that check in on us know them all too well. Eli is happy that they have officially said he can stop getting the nightly GCSF shots in the leg to boost his counts (yeah!) after weeks of getting it every night. The GCSF also eats up the platelets, so hopefully after a few days, Eli will start making his own platelets. However, the doctors have changed their tune a little bit and now say that if we can keep Eli’s platelets above 50 WITH transfusions, that is good enough to proceed with the 8H9, potentially starting next week! Originally they had said he had to keep his platelets above 50 on his own, but I think they are ready to get him going on something! We need to repeat his brain MRI next week, so please pray that it shows nothing new!

Today when Eli went in to get his finger stick (his most despised procedure), the nurse told him that she was all done. He said, “No you’re not, now you are going to squeeze my finger 20 times to get the blood out!” She said, “Ok, let’s count and see if it is 20.” He looked at her unapprovingly and said, “I do NOT want to make this a contest.” You don’t mess with a boy during his finger stick. 🙂 For some reason, Eli would much rather have his port accessed with a big needle than have his finger stuck like a Diabetic.

We will confirm the plan as we know counts next week, but potentially we could do an 8H9 trail dose next Thursday, then the REAL 8H9 dose the following Tuesday. The real dose is followed by daily tests, but then we would be “home, home” for 2-3 weeks while his platelets recover. The real dose is so radioactive that Eli won’t be allowed to come back to the Ronald McDonald House that night (but they no longer do 8H9 inpatient) and we won’t be able to be too close to him, so we will have to spend one night at the Helmsly Medical Tower (basically a hotel across from the hospital) on Tuesday night (June 9th). Again, these dates are all subject to change based on his body’s counts, but this is the rough idea.

Last week we had the opportunity to see the Yankees play with Uncle DoDo and we had amazing seats right behind the Yankees dugout. The police van took us and Eli enjoyed getting to order anything he wanted from the menu since it was all included in the $325 seats we were sitting in (ok, we ALL enjoyed that part). This week, we also got tickets for seats right behind the Mets dugout (SWEET), but they didn’t include free food with their $225 tickets. Man, are we spoiled or WHAT? It was funny to see how many people offered a ball to the bald kid when the players would throw them into the stands after each inning. We had to keep turning people down at Yankee stadium because he got the first ball thrown around during practice before the game began. So in one week, Eli ended up with a Yankees game ball and a Mets game ball. He said the Yankees one smelled like grass and the Mets one smelled like dirt. 🙂 We also checked out the new Night at the Museum movie this week and we all really enjoyed it. Another one of my coworkers, Jeremy, and his wife Melissa came to NYC last Sunday and hung out with us all day. We were able to do breakfast at the house, Central Park, the Apple Store (nobody bought anything if you can believe that), FAO Schwarz (fun fact – they just got bought out by Toys R Us yesterday), and a Dallas BBQ dinner. I don’t know this for a fact, but I might have the Ronald McDonald House record for the most visits to NYC by coworkers after Commander Schager’s Navy pilots. 🙂

You have heard me mention the Band of Parents, the group that raises money for Sloan to further develop treatments for Neuroblastoma. I created a promotional video for the group using (of course) Animoto.com. The video can be found at a new site we created called Videos of Hope (http://www.videosofhope.com) – scroll to the very bottom of the page to see the Band of Parents video. This is actually a Facebook Group, so you can join it if you are already a Facebook member, but it’s public, so you don’t have to sign up to see it. Videos of Hope is a project started by Ingrid Meagher. Ingrid is the wife of Nate Meagher, the CFO of Animoto.com. Several of you know that I have used Animoto.com for over a year to make music videos from the pictures I take instead of sharing plain slideshows with all of you. Ingrid and the guys at Animoto.com have been great friends to Eli and our family and have been following Eli’s journey since we paid a visit to Animoto’s NYC office in February of 2008.

In March of this year, Ingrid and I met about a project she was interested in doing to raise awareness and possibly funds for Neuroblastoma research. She asked me about different groups and where the most “impact” would be felt and of course I said that the Band of Parents was the group Lacey and I felt the most passionate about in regards to raising money and awareness for Neuroblastoma. So Ingrid worked with the guys at Animoto.com and came up with a promotion that will benefit the Band of Parents. Basically, when people sign up for any of Animoto.com’s services, they can enter the promo code of ‘HOPE’ and Animoto.com will donate part of the proceeds to the Band of Parents. The full details on how much will be donated based on what is purchased can be found on the website at www.videosofhope.com. Animoto.com has also donated a full business account for the Band of Parents so we can create promotional videos with “call to action” links that drive people to our Donations page.

Animoto.com is so easy to use and I have found it to be a GREAT way to share our NYC experiences with all of you. You pick the photos you want to use (either import them from a site you already use to host your photos like Picasa, Flickr, Facebook, etc. or upload them directly to Animoto.com), you pick the music (choosing from their massive collection or upload your own), and the Animoto technology does the rest, matching the transitions to the style of music you have chosen. You can easily export the final video to YouTube, download them to your computer, or embed them or link to them on your CaringBridge site. And now, if you make any purchases with Animoto.com and use the promo code of HOPE, Animoto will donate part of your payment to the Band of Parents! 30 second short videos are free, full length videos are $3 each, and a 1 year subscription with unlimited full length videos is $30. They also have Animoto accounts for Business (Realtors and Photographers for example) and for Non Profits. I know several of you have already signed up for an Animoto account, so check the website to see how your purchases can still benefit the Band of Parents!

Ok, back to the business at hand. 🙂 Eli has been feeling pretty tired lately. We think it is the radiation somnia they warned us about that would hit 4-6 weeks after total spine and head radiation. He has also had a few headaches that we are trying to keep an eye on. His scar’s infection seems to be going away with daily treatments of topical cream. We are trying to get more weight on him since he is looking pretty skinny, but overall he has done a really good job of keeping his weight from falling dramatically. Thank you for the continued prayers as we start moving forward with the 8H9 antibody treatments! Oh, and thanks to everyone who has been pointing out the news articles about using Immunotherapy for Neuroblastoma. That is something that Sloan has been saying for the last 20 years and 3F8 and 8H9 are both immunotherapy protocols. It is becoming newsworthy because the Children’s Oncology Group is finally admitting that using antibodies (along with transplants) help improve the success rate of treatment. We agree, but for us, we sided with Sloan that a transplant wasn’t going to be helpful in Eli’s case and was way too risky. The good news in all of this is that Neuroblastoma awareness is getting out there, even if it is baby steps. Many of you would have never paid attention to those news articles had it not been for Eli, but now your ears (as well as ours) certainly perk up whenever you hear the word Neuroblastoma. That can’t be a bad thing.