So at long last I update. Not only that, but I realized that something happened to my last update and it took out two big paragraphs of text. I am sure people were wondering why it went from talking about radiation to the random videosofhope.com link! Sorry about that, I am usually very careful about making sure the updates look right! The paragraph before videosofhope.com was talking about how we were going to pay a visit to the Animoto.com guys and finally meet their CEO (Brad) who lives in California. We had a blast (as usual) and it was the one day Eli jumped out of bed with a smile on his face ready to go. He had been counting down the days and when it was finally the big day, he was very excited. There is just something about the guys (and gals) at Animoto.com. I can’t really explain it, except that they are amazingly supportive and really love it when Eli stops by to say hi and shoot some hoops. We had some breakfast with them, got to see some sneak peeks at what they are working on now, and of course Eli had to keep working on his 3 point shot and show everyone how to play drums on Rock Band (I believe it was his second time playing the game, but he considered himself an expert).
We were able to come home last Monday (yeah, we’ve been home for a week and I’m just now updating) and have been enjoying every minute of it. Last weekend we went to a Club Hope picnic with a bunch of other Iowa families and had a blast. Eli and Isaiah played in the pool and slip n slide with all of the other kids and they played HARD. Lacey and I were a bit surprised at how much of a little New Yorker our son has turned out to be. We didn’t really notice it since we were in New York so much, but when he was playing with a bunch of polite little Iowan kids, it really started to show. At one point, someone shot Isaiah with a water gun and Eli shouted, “Hey, yo, that’s my brother, what are you thinkin’?” and was shaking his fist in a very Italian New Yorker way. He was trying to be funny, but he had JUST met these kids 10 minutes before and they weren’t sure what to do with him yet. We have some “untraining” to do I think! Here’s a picture of the fist shake:
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Eli is excited to start Kindergarten on the 20th of this month. We specifically asked Sloan to avoid that week so that he didn’t miss his first day of school. Eli will be attending Ankeny Christian Academy. Lacey and I considered several schools and ACA was a really great fit for Eli. He will have about 9 kids in his class and all of the teachers are very aware of his situation and willing to help him out in any way possible. One of those ways is one of the most critical – prayers. One advantage to a Christian school is the obvious synergy we will have in Eli’s education reflecting the values that he is taught at home. They are able to (and will) pray right in the middle of class for things that come up. They will also be cognizant of the status of his immune system in case someone comes to school sick and will be able to alert us. So Lacey and I feel great about the school and Eli is excited as well. I’m not sure how long that excitement will last once he realizes he has to go to school all day every day all week long, but we’ll hope for the best. 🙂
The OTHER paragraph that got cut out of my last post is a pretty big one. I’ll just paste it back in here (hint to other CarePage/CaringBridge updaters, I e-mail myself a copy of all my updates just in case CarePages.com explodes and loses it’s databases with all of it’s backups):
A bit of surprising news was also delivered today. Eli is now HAMA negative! Lacey and I were quite certain that we would have to do the rituxan and chemo treatment to get Eli’s HAMA to go away since his last score was so high (6,632 and anything over 1,000 is positive). However, his blood draw from last week shows he’s HAMA negative, so we get to come back for scans and 3F8s in 3-4 weeks! Even though we just did a full workup, we have to do scans again to satisfy the 3F8 protocol, so we will be repeating those near the end of August. That was definitely a great surprise and we’re very happy that we get to jump back into the 3F8 world after taking this 8H9 detour. Round 10 here we come!
Our next round of scans will start August 26th and will be a full workup. We have been getting Eli’s counts checked every other day while at home and they have been LOW. Eli needed platelets on Friday, so we took him to Blank Children’s Hospital in Des Moines to get them transfused. We can do this at Mary Greeley in Ames, but it takes a VERY long time since they are not used to doing it that often. It took 6 hours last time and the platelets had to come from Des Moines, so we decided to just go to Des Moines and have them done where they did it all of the time. We also got to meet the NEW pediatric oncologists at Blank (you might remember that the last Dr. there told us in November of 2007 that they wouldn’t do the chemo for us that Sloan prescribed and that we should probably just pack up and go to NYC for ALL of our treatment). Thankfully, the doctors with the huge egos are now gone from both Iowa City and Blank and Dr. Woods and Dr. Mitchell in Des Moines are fantastic and have assured us that they will do whatever is best for Eli. THANK YOU! We have waited a long time for someone in an Iowa oncology hospital to say that! I took Eli to Des Moines again today to get his counts checked since we were SURE they would be low, and sure enough, they were VERY low. He got platelets in the morning and then needed red blood in the afternoon. It was a long day, but by the end of it he was all juiced up. We will see what his counts are on Wednesday. His white blood count is nearly nothing, so he is very neutropenic right now and getting a daily GCSF shot to try to stimulate those white blood cells (which also eats up his platelets). We are praying that he doesn’t get a fever, because once he does, that means he goes inpatient. You’ll remember that we were able to avoid that last time, which was great, but it might be difficult this time. At least we know that he has a place to go (Blank Children’s Hospital in Des Moines) if he does need to go inpatient. We saw the inpatient side and it was really nice. Overall, we are very happy with Blank now and finally feel like we have some great “home care” to supplement his primary care in NYC!
Before I sign off, I just wanted to thank everyone that has been ordering “Beat Cancer” shirts from www.beatcancertoday.org. The shirt sales have been amazing (we have sold over 400 so far). We got a few “preorder” shirts and have been wearing them around in public and it generates questions from perfect strangers, which is great. They look awesome and I’m happy to say that the Cyclone themed shirts are maintaining their small lead over the Hawkeye and “other” shirts. Again, they are $10 plus shipping and the proceeds go to CureSearch.org. Thanks for all of your support!
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