I have a confession to make. Eli and I are in NYC and he has had completed a day of 3F8. I realize that this might be a surprise to some of you since my last update was posted from Brasil after Eli’s second day of 3F8 for the last round. Since that time, we all got home safely and enjoyed a few weeks together before learning that Eli was once again HAMA negative! Of course, we learned about this on a Tuesday evening and had to start his GMCSF shots the next day, so thankfully we had planned ahead and ordered the GMCSF, which arrived on Wednesday. We also were blessed with a free ride to NYC on Friday with Meredith Corporation on their jet and a free ride from the airport with Limo Express thanks to Corporate Angels. It doesn’t appear that anyone has a flight back to Iowa after this week of 3F8, so we’re not sure how we are going to get home yet, but we have some time to pray about it and figure that out.
Since we got here on Friday, Eli and I tried to stay well entertained over the weekend. We did our traditional Friday father-son lunch at Brother Jimmy’s BBQ after getting checked into the Ronald. Eli loves the mashed potatoes and gravy and I love their fried shrimp po boy sandwich. I think Eli plucked at least half of the shrimp out of my sandwich as I was eating it, though. 🙂 It sure is good, and we can both eat a great lunch there for $12 plus tip since kids eat free! It was a gorgeous day, so we walked to Central Park and spent 5 hours there before realizing that the House was going to be at the Wollman rink for a final time of ice skating in another hour. So we stayed at the park and met them at the rink. I have to say it was interesting skating in 65+ degree weather outside! There was an inch of water on the ice and it was funny to see all of the waves from people gliding through the water. It was fun, but we didn’t get back to the house until after 9pm, so we had a VERY long day in Central Park. The next morning, we got up at 6:30am so we could be seen in the crowd on the CBS Early Show and have a private party with Candlelighters, NYC at FAO Schwarz. The kids loved having the whole store to themselves an hour before it opened to the public! It was also fun for me to see the line in front of the NYC Apple Store where people were waiting for the launch of the iPad. At 9am they opened the doors to thunderous applause. No, I was not in that line, and I didn’t get my hands on an iPad because for the next several hours, that line never got smaller. I heard the first person in line had been there since Thursday morning.
We had a good Easter on Sunday. The House had a party, as usual, and we basically hung out at the House all day, with the exception of a trip to the park with Eli’s buddy Sam and his brother Ben on Sunday night. Eli isn’t a big fan of Easter egg hunts with lots of other kids, so he is looking forward to doing one with his brother once we get home. At FAO Schwarz, someone wanted the piano dancers to play Happy Birthday. They asked whose birthday it was, so Eli said, “Um, the Easter Bunny!” Later on, NY Grandma Barbara asked Eli to tell someone what Easter was a celebration of (hoping to get the cute ‘Easter Bunny’s birthday’ response), but thankfully Eli said, “It is when Jesus rose.” I smiled and wiped my brow in relief. I’m always relieved when home teachings stick better than worldly influences. It’s a natural confusion when Christians put Scriptural connotations on top of established worldly celebrations like Easter. We Christians just have to remember how important it is to reinforce to our kids what these holidays really mean to us and not let it get diluted by colored eggs and chocolate bunnies. I thought my theological mind might explode when I saw an Easter basket with peeps and Jewish matzah in it. Only in NYC, I can assure you. 😀
So today was Eli’s first day of 3F8. We had a morning bed, which turned out to be a good thing because Eli’s hemoglobin was 7.9, so they wanted to give him a blood transfusion after his 3F8. Eli had quite a bit of pain today and needed a few rescues and hot packs, but he slept off his drugs while getting his red blood. He listened to the Princess and the Frog soundtrack today and seemed to enjoy that. As of right now, he is actually upright and playing on webkinz.com with Sam and Ben, which is amazing for a Monday! Usually he is completely out of it all night long on a Monday. We are anxious to hear what the next steps are because according to his 8H9 protocol, this is Eli’s fourth and final round of 3F8. According to the protocol, he should keep going with Temodar and Accutane (he is halfway through his 6 required Accutane rounds). Our question to Dr. Kramer is whether Eli can keep doing some 3F8 rounds in between during the times that he is HAMA negative. We will see what she says. We are also anxious to see how his counts respond to more Temodar (we had to stop it halfway through the second round because his counts got so low and had a hard time recovering.)
As usual, the roller coaster of good news and bad news continues in the world of Neuroblastoma. Ylaria and Nick are going through a hard time; Gabby is now in heaven; Justin, Ty, Ila, Ber, Morgan, Kate, Bayler, Cheyne and Sam are fighting through treatment like Eli; Kieran, Trey and Tony are cruising through scans; Jack is starting the coveted vaccine; and we have met many new faces already in the past several days. I am leaving off many of our friends, this is just a sampling. Thank you for continuing to keep our friends in your prayers as well as praying for Eli.
Also, we are participating in the CureSearch Walk in Des Moines on May 1st at the Blank Park Zoo. If you want to be a part of the walk, or just donate, you can register and join “Eli’s Army”. Eli’s page can be found here: http://goo.gl/d1TE
CureSearch does give money to Neuroblastoma research at COG hospitals, although not to the hospital that we go to that does the advanced research. The Band of Parents is the biggest group to support Memorial Sloan Kettering Cancer Center’s Neuroblastoma research and they have a cool new fundraiser where you can download a song by Abby Miller (a 12 year old singer and buddy to our friend Taylor Love) for $1.99 and the proceeds go to the Band of Parents. You can check out a cool YouTube video about Taylor and Abby here: http://goo.gl/tDa6
You can find the song by going to http://www.artzuno.com and follow the link to Abby’s song!
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