I believe I have set a record. I didn’t go back to look, but I believe it’s safe to say that this is the first time since June of 2007 that I have gone more than 3 weeks without updating Eli’s CarePage. I’m not sure that’s exactly something to be proud of, but I can assure you that your assumption that “no news is good news” is exactly right. In fact, I’m not sure I even have a lot to update about tonight, I was just riddled with guilt for not updating!
We did get a chance to do something fun a few weekends ago. Dance Marathon in Iowa City had a fun gathering in Davenport, IA at the Putnam Museum and IMAX. We had the entire museum to ourselves and we got to enjoy Polar Express in IMAX 3D. It was also fun to see several other CarePage families there that we have known since our early days in Iowa City, including Dawson DeCap (http://www.caringbridge.org/il/dawson/) who is a fellow Neuroblastoma warrior that was treated at Sloan in NYC! I say “was” because Dawson is off treatment and actually not even getting 3 month scans anymore, he is officially on long term care with Sloan! We got to see Simeon (cp: simeon5) who was one of Eli’s original roommates in Iowa City, Mikayla (cp: MikaylaVanWey) who’s parents have started a great Flashes of Hope branch in Iowa (http://www.flashesofhope.org/), and Bryce (cp: brycelove) who we met in person for the first time since our previous interactions were through CarePages! So, all in all it was a really fun time and well worth the 3 hour drive each way.
We also got a chance to drive all the way to Boone, Iowa (30 minutes) to have dinner with our friends the Roneys! Nic Roney (http://www.caringbridge.org/visit/nicroney) is a teenager with Neuroblastoma that we met through our CarePage. Nic has started going to Sloan for treatment options (but gets to do his chemo as an “adult” in Ames) and will be going back to NYC for scans mid January (we’ll miss being there together by about a week and a half). It was really fun getting to hang out with them and we had a great homemade meal. Eli really had a fun time picking on Nic’s dad (Travis) who he calls “the funny guy like Mr. Lou”. Mr. Lou is the dad of Eli’s good buddy Griffin in NYC. All was great until Nic showed us his room, which was adorned with Hawkeye logos. 🙂
Other than those highlights, we have really been falling back into as normal of a routine as we can. Eli is almost done with his 4th round of Accutane. It really dries out his skin, which is kind of cruel to do to a kid in the middle of an Iowa winter, but what can you do? He takes the pills like a real champ and honestly the worst part is getting him to hold still long enough to have moisturizers put on. We also had to run into McFarland today to get his port flushed because it needs to be done every 30 days or they start to worry about clotting. Much to our nurse’s joy (we love Lindsay), both the upper and lower port flushed just fine. Eli of course was enjoying cracking the nurses up and didn’t shed any tears over the two pokes. One of the nurses asked Eli what he wanted to get from Santa. Eli said in a hushed voice, “Well, I know that there is no Santa.” Luckily I wasn’t chastised by the nurses for the unAmerican values I was clearly instilling in my four and a half year old, they just laughed.
Obviously Eli knows the real reason we celebrate Christmas and that there isn’t really a Santa (he asked me flat out one day, I wasn’t about to lie to him.) However, he still enjoys the idea of Santa and is happy to talk about him and pretend. In fact, he heard about writing Santa a letter and decided that would be fun, so he dictated as his secretary (Mommy) wrote it down exactly as he said it. He wasn’t prompted, his words were written down as they were produced. He garnished the letter with a drawing of a cheetah and every letter he knew how to write. Following the lead of Peggy, Coleman Larson’s mom, I will transcribe Eli’s letter to Santa, which comes in two parts because Eli’s attention span lasts about 3 minutes and he wanted to add more later:
Dear Santa,
Santa I would like some potion sets. Santa if you don’t have that I would like a set where you decorate a tree. Santa I love my friends and I hope Christmas comes true. I wish, I wish, I wish more snow to come. I want some presents. Am I on the bad list or the good list? I live in Iowa.
(Part II)
Dear Santa,
I would like some potion sets. I’m so glad I have this house instead of any other house. I want a lot of treats, like a popsicle or a popsicle shaped like a car. I’m sorry that I fight my brother. I love your presents.
There you have it. Eli’s two chapter letter to a guy he doesn’t believe exists because his Daddy told him it was fun, but not true. I am now prepared to take my lashing from those that think it is terrible that I “stole the joy of Santa” from my little boy. 🙂
We have been enjoying seeing friends and family and we will certainly be counting our blessings when we are celebrating Christmas at home in Iowa. We truly do miss our friends in New York City though, and think about them as some of them spend yet another Christmas at the Ronald McDonald House or Memorial Sloan Kettering Cancer Center. Speaking of New York, thanks once again to B.J. at Midwest Airlines, Eli and I have our tickets for our trip back to our Manhattan home January 3rd through January 10th. Since Eli is still HAMA negative, he will be undergoing round 9 of 3F8 antibody treatments. We have decided that it is well worth showing up an extra day early on Saturday to give Eli two days of fun before treatment starts. He really likes going to bed on Saturday night at the Ronald knowing that he doesn’t have to report to the hospital the next day. We also plan on visiting our good friends at Animoto Productions (www.animoto.com) again this trip. They have a new office and it’s very easy to get to by way of the 6 train, so we plan on stopping by to say hi and see their new digs. For those of you that haven’t seen it already, please check out the Animoto Christmas card we made this year: http://christmas.hornit.net
Well, that about does it for now. Maybe it wasn’t the update you were expecting after 3 weeks of silence, but it’s better than going 4 weeks without a word, right? Thanks for staying with us and for all of the prayers and support you send our way.
Facebook
Twitter