As it has been a while since my last update, I thought I’d check back in and let everyone know that things are going well at home. I also know there are a lot of new CarePage readers to our site since we have been weekly handing out Eli bracelets and meeting people who want to follow Eli’s progress. Thank you so much, whether you have been following our CarePage from the very beginning (June 2007) or whether you just signed up. I have even heard of people that have recently signed up for Eli’s CarePage and have felt inclined to go back to the beginning and read through all of the posts. Wow, that’s a lot of reading. For everyone else, just know that it has been a crazy 17 months full of ups and downs. Right now, we are cautiously enjoying an up moment as far as Eli is concerned. His treatments have been going well, he is feeling great, and our bone marrows came back today from Dr. Kushner as “clean”. So, all scans are in and Eli still has “no evidence of disease”. We thank God for that every day that we don’t have a fresh relapse! To keep things in check, we now try to keep from worrying about Eli’s HAMA results. For you new followers, HAMA is an antibody to Eli’s treatment. Meaning, if Eli is HAMA positive, he can no longer do his treatments, so obviously we pray each round for him to “not have HAMA”. We should know by next Wednesday if Eli is HAMA positive or not. Several of our buddies that have been going through several rounds of 3F8 like Eli have recently tested HAMA positive, so it’s fresh on our minds.
We have definitely been enjoying being at home. This will be the longest stretch of time that we have continuously been at home (which contrary to popular belief is in Ames, Iowa and not New York City). We have been enjoying D6 (a program at our church for kids and parents) on Wednesday nights, tae kwon do on Thursday nights (Eli is REALLY enjoying that), and Kindermusik for the boys on Friday night. This past Tuesday night, the Iowa Heart Connection (http://www.childrenscancerprograms.com) threw a “Wii Party” with one of the local hockey teams (The Des Moines Buccaneers). They had 7 Wii systems setup with 7 projectors and big screens around a huge room. There was pizza, pop (or soda), cookies and plenty of baseball/bowling/tennis/etc. There were several Buc players stationed at each Wii and the kids were having a great time playing them. Eli thought he was hot stuff by beating the big guys at bowling. He was slow to catch on that they were aiming for the gutter quite a bit. 🙂 I didn’t get a ton of good pictures, but I know the website of the guy that did, so as soon as he posts his photos, I’ll grab them. Here are the few that I took:
For those of you that are not procrastinators (much unlike myself) and are already thinking about Christmas gifts, I thought I’d let you know that the cookies for kids with cancer program that was a big hit last year is up and going again, this time as its own charity that benefits several different pediatric cancer research programs. They are really well done (fancy) and make a cool gift because you (and the gift receiver) know that 75% of the purchase price goes directly towards childhood cancer research. Last year, it all went towards the Band of Parents (which is the group we really believe helps fund some very promising research in the world of Neuroblastoma). This year, you can pick which childhood cancer research you want to support. When you check out, you pick from a drop down list of which type of cancer program you want your money to go towards. Obviously we support the Band of Parents at MSKCC (Memorial Sloan Kettering Cancer Center). Anyway, I thought I would post the link to the website for anyone who would like to order some cookies as gifts, or just to eat (I had some last year, they are very high quality). http://www.cookiesforkidscancer.org
Just a quick note to our friends that will be in New York City the first weekend in December: Candlelighters, NYC is having a private party with Santa at Bloomingdales on December 6th with a high class photographer. Be sure to RSVP for that if you’re going to be in town: http://www.candlelightersnyc.org
Thanks to everyone for your continued prayers. We are so thankful for them and know they really are effective. Eli is finishing up his third round of Accutane and his skin is very dry, but that is manageable (thanks for the Vitamin E and Calendula advice, Sarah) and thankfully we haven’t seen much (if any) of the emotional side effects (again, prayers are effective). I believe I just set a record for the most number of parentheses used in a sentence. English teachers please look away. Get this (and we are still trying to wrap our heads around this thought), starting next Monday, Eli will not have to take any medication for two whole weeks. Nothing. That hasn’t happened in the last 17 months. After two weeks, we’ll be back on a fourth round of Accutane. At one point, Eli was taking up to 6 oral medications three to four times a day (three were for blood pressure issues alone)! Wow, thank you God.
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