Well, it has been a few weeks since my last quick update, so I thought I’d post something to make sure everyone knew how things were going! First of all, I’m happy to report that Eli’s bone marrow biopsies and aspirates came back clear, which is great news. So that means his complete workup from the 2 days before Thanksgiving came back NED (no evidence of disease). Obviously this doesn’t mean we are out of the woods by any means since relapse is so common with Neuroblastoma, but we are certainly thankful for his current status! Eli has consistently been testing HAMA positive (including today’s results), so we can’t continue the 3F8 treatment. In the meantime, we are alternating between low dose chemo (oral Temodar) and high dose Accutane. Eli takes Temodar (5 pills once a day) for 42 days and then takes Accutane (2-3 pills twice a day) for 14 days. The 8H9 protocol that we are technically still on calls for several cycles of this. So far he has completed one round of Temodar, one round of Accutane (hello moodiness) and he has started his second round of Temodar.
We didn’t expect Eli’s counts to drop significantly on Temodar, but we were surprised to find out last week that Eli is neutropenic (which means he has very little white blood cells and essentially no immunity). The poor kid had some serious issues with his port and had to be stuck multiple times before finally having to get blood from his arm. He was a trooper though (as we have come to expect) and thankfully when we brought him in for a red blood transfusion today, his port worked just fine. So now we are in discussions with the doctors in New York about what we should do about Eli’s low counts and when they want to consider using the Rituxan antibody to lower his HAMA level (unfortunately it is accompanied by chemo, so his low counts might exclude this option right now). So, please pray for wisdom for the doctors and that Eli won’t get sick or get a fever, which would require hospitalization.
Yesterday we went to a new Pediatric Dentist here in Ames because Eli’s teeth spacers needed to come out. They were supposed to prevent his 6 year molars from coming in where his baby teeth were pulled in NYC, but the molars were coming in underneath them, so they weren’t actually doing the job. There goes $6k of uninsured dental work down the drain! 🙂 I’m tempted to take the metal spacers and dip them in gold to put on our wall. Who knows, if you believe what you hear on conservative talk radio, those gold plated spacers might be worth more than $6k in USD in a few years! Sorry if that joke is too politically charged, I try to avoid that, but I couldn’t help myself after hearing the 1000th Goldline commercial. 🙂 Anyway, we LOVED our new dentist and were surprised to hear her refer to the effects of chemotherapy on baby teeth. A local Ames dentist with experience in pediatric oncology patients! She knew her stuff!
Otherwise, we have been doing our best to live a ‘normal’ life (as normal as it can be with a kid who has a port in his chest, a port in his head, and pops chemo pills every night before bed). Eli has been doing great at school and he really enjoys it. We have seen him grow a lot in the past 4 months and we are very thankful for the education he is getting and the friends he is making. While it isn’t as easy as it is in NYC, we have tried to continue being somewhat adventuresome when the opportunity arises. We had a great time ice skating with the Heart Connection group at the ice hockey arena in Des Moines. We also enjoyed going to the Putnam Museum and IMAX in Davenport, IA with the Dance Marathon group to have some lunch and watch Cloudy With a Chance of Meatballs in IMAX 3D. We have been able to attend a few Iowa State basketball games thanks to the generosity of our friends and CarePage followers. Pam sent us to watch the Cyclone men play against UNI (unfortunately we lost, but it was a GREAT game in GREAT seats) and Jeremy and Melissa provided us with Cyclone women tickets (just the other night we watched the women crush UNI). We are also VERY excited that some of Eli’s bracelets will be enjoying the warm weather in Tempe, AZ as our Iowa State Cyclones play in the Insight.com bowl and beat the Big 10 Minnesota Gophers!
Our investment into a 4×4 truck with a snow plow has proven to be a good one since we have used it several times to clear our driveway and even the gravel road that we live on that tends to be neglected by our county. However, even with a truck and plow, there were several days where we were still snowed in our house because the drifts on the gravel road were too deep and long for even our truck to get through and we eventually had to call the county to get us out! Some of you noticed that I posted a tour of our yard on YouTube in all it’s drifting glory.
Once the county came, I was able to use our truck to keep the road clear so that we could still get out and attend events like Eli’s school Christmas Program. It was very cute of course and I also uploaded a clip of one of the songs they did. Eli is the shepherd in the blue shirt standing in the front row between two angels. 🙂
Another exciting event was Caden Larson’s birthday party at the roller skating rink in Gowrie, Iowa (about an hour drive from Ames). Long time CarePage readers will remember our little buddy Coleman Larson (cp: ColemanScott) who passed away around this time last year after battling Medulloblastoma. Caden is his twin brother and he and Eli are good buddies (and of course we all adore their parents Scott and Peggy). We spent time with the Larsons both in Iowa and in NYC, but we don’t see each other nearly as often as we would like to, so when Eli got the invitation to a roller skating party, there was no question that we would go. It was a really fun time and Eli even RECEIVED presents from the Birthday boy since Caden had been buying up Iowa State stuff right and left to give to Eli the next time he saw him. Pretty generous for a Hawkeye fan! Speaking of the Hawkeyes, we know that some of Eli’s bracelets will also be in Miami as the Hawks beat Georgia Tech in the Orange Bowl in January!
Also, I failed to mention that we were able to get away to Branson, MO the weekend before our whirlwind trip to NYC to meet up with my brother, his wife, and their baby Owen as well as the entire Atkins family. You might remember me mentioning Trey Atkins (http://www.prayfortrey.com) who is a fellow Neuroblastoma warrior that is treated in NYC. The Atkins are doing scans in NY right now, so prayers are appreciated. Anyway, we decided to head down to Branson (about 7-8 hours from Ames) and spend the night at a waterpark hotel on Friday night (http://picasaweb.google.com/HornIT/Waterpark) and spend Saturday at Silver Dollar City (an amusement park in Branson – http://picasaweb.google.com/HornIT/SilverDollarCity). I can’t express how great it was to see my brother and his family as well as the entire Atkins clan. We had an absolute blast and can’t wait to do it again some day.
Finally, I’ll close by wishing everyone a Very Merry Christmas and a Happy New Year. We are SO thankful for the blessings God has given us in 2009. Our CarePage readers absolutely fit into the category of blessings, so thank you for continuing to be a part of our lives and witnesses to what God is doing with the life of a little boy named Eli. Please enjoy this online Christmas Card from Eli and Isaiah that we created thanks to the amazing talents of our friends at Animoto.com: http://christmas.hornit.net
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