Well, chemo is done! I’m very thankful to be able to say that! Thanks to everyone for all of their prayers through this high dose round. Eli did great and we were able to get out and do fun things every day after his chemo infusion. Yesterday we got up a bit earlier than usual to have breakfast with some families downstairs. After breakfast, Eli took a 2 hour nap. When he woke up, he ate pretty well and we played some games, but then he wanted to just lay down and his stomach wasn’t feeling all that great. Last night, he took another nap from about 8-10pm. I gave him some nausea medicine, but was realizing that it was his first day without a good dose of IV Zofran (anti nausea medicine), so he was probably feeling the effects of not having the Zofran boost. I am now giving him Zofran during the day instead of the other medicine I was using to see if that helps. We are also expecting some delayed tiredness from the cranial and spine radiation. They said that usually hits several weeks after radiation ends. So whether it’s side effects from the chemo or from the radiation, he was definitely a bit more sluggish yesterday than he has been all week. Your continued prayers for Eli and his counts are appreciated. He will become neutropenic (for the new visitors, that is when your blood counts go so low that your immunity is basically shot), and maybe to the point of needing a stem cell rescue (we have some stem cells here in NYC that we harvested last summer, which is when his big bowel obstruction drama and all of those surgeries hit). We can’t move to the next step until his counts start to rise. They had already started to drop as of Friday, but were still good and weren’t in the neutropenic range yet.
Yesterday we also got to meet David Cone. Baseball fans will know him as a great pitcher, and the last Yankee to pitch a perfect game (7-18-1999). I told him that we were from Iowa and he said that he used to pitch for the I-Cubs in Des Moines! He gave Eli an autographed baseball. Eli really just wanted the baseball and I had to stop him from coloring on it with a green Sharpie. 🙂 He also was arguing with me that it didn’t say Eli because he didn’t recognize the L (it was in cursive). 🙂
Eli has also been into Monopoly lately, so every day at the clinic last week, we could be found in the playroom playing a game of Monopoly. I am loving it because I have always loved Monopoly (I even have a collection of different Monopoly boards), but nobody ever wants to play a game with me. They have all sorts of excuses like, “It takes too long” or “It’s boring” or “You play cutthroat and are too competitive and are no fun to play with because you always win!” Whatever, like I said, excuses. Eli doesn’t complain. In fact, he somehow managed to get all 4 Railroads in one game (he got three of them in the first trip around the board) and kept getting at least $200 out of me each time I’d go around! His grandparents sent him a Star Wars Clone Wars Monopoly board in the mail yesterday and so of course we have been playing that version lately. He’s a very big General Grievous fan, or pretty much any of the bad guys. 🙂
Friday brought us a pretty big surprise. You all know about the St. Baldrick’s event that our friend from church (Kris) organized to be held on Saturday, May 16th in Ames, IA. She decided to shave her head in honor of Eli and the event is honoring other Iowa pediatric cancer warriors as well. I have been following the event’s progress closely and every time a new shavee is added, I notice. So on Friday afternoon, I noticed that my IT coworker, Jeremy, had suddenly appeared on the site! I tried to chat with him about it, but he was being very tight lipped about the whole thing and I wasn’t sure what was going on. Jeremy had shaved his head to be like Eli when he was first being treated, but not as a part of an official event, so I thought maybe he was just jumping on board to help the event out. What I discovered was that it was much more than that. Several minutes after making my “discovery”, I saw an e-mail from another coworker of mine (Cozette) that was sent to all of our US employees letting them know that the entire IT Help Desk Department and Jeremy had formed a team called “ITS Bold and Bald” and were all going to shave their heads in Eli’s honor for St. Baldrick’s in an attempt to raise $5k for the event. I instantly got goosebumps as I read that Will, Brett, Jayme, Joe, Tom and Jeremy were all going to shave their heads (3 of them at the actual event in Ames since the other 3 had scheduling conflicts, but will be shaving on their own and doing the fundraising nonetheless). I then laughed as I imagined our next IT meeting with 7 of us bald guys sitting around the table trying to avoid the blinding light reflecting off of each other’s heads. 🙂 Cozette (who, like many of you, also became very attached to our Angel friend Coleman Larson (cp: ColemanScott)) did all of the coordination, communication and team setup for the guys on the website so all they had to worry about was enjoying their last few weeks with hair on their heads (and getting sponsors of course). 🙂 Please check out their team page here and consider donating even $5 to a great cause:
http://www.stbaldricks.org/participants/team_info.php?TeamKey=2009-64611
Remember, St. Baldrick’s is an organization that raises money for all kinds of pediatric cancers, not just Neuroblastoma.
I guess I’ve always incorrectly assumed several things throughout this CarePage site. That everyone knows that I (Aaron — the Dad) write the updates (although I always send them to my fact and content checker, Lacey — the Mom, before posting them) and that everyone knows I’m a “computer guy”. Obviously my friends, family, and coworkers know that, but we have met so many people throughout our journey (both online and in person) that don’t necessarily know that I am the IT Manager for Becker Underwood, headquartered in Ames, Iowa. I have worked there since I started as a Help Desk intern in March of 2001. Lacey has worked at General Mills near Des Moines, Iowa for the same length of time and we are both extremely blessed to have amazingly supportive employers and coworkers. Having 6 of my fellow IT guys shave their head in solidarity and support of my son is more touching than I can put into words. Not to mention the fact that our coworkers have been following Eli’s CarePage from the very beginning, offering their encouragement and prayers without ceasing. Even several of our Becker Underwood IT third party vendors follow Eli’s CarePage and keep him in their prayers. I could go on for hours about the great stories of our supporters since each of you have some sort of connection to Eli (whether it was before or after his diagnosis and whether or not you’ve actually met him in person). We see so many nightmare stories in NYC where parents are struggling with their bosses to be able to be with their kids during treatment and we never take for granted how fortunate we are to be able to be here for Eli during all of this. Not everyone is so fortunate.
So, it is with high spirits (and dropping blood counts) that we go into next week, knowing that we have an amazing support group behind us and an amazing God in front of us. Like a broken record, we thank you once again for your prayers.
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