Once again, long time no update. As you probably assumed, we made it home from Chicago safe and sound and have been enjoying “home life” ever since. We did have a great time at Legoland and Shedd Aquarium. Both great family spots to visit if you’re in Chicago.
Eli has been going back to school and doing another round of high dose Accutane. Once the Accutane was done, he was supposed to start another round of oral chemotherapy called Temodar. You may recall that last time, Eli’s counts dropped big time on Temodar and we had to stop him halfway through his second round. Well, after the Accutane, it was time to start Temodar, but Lacey and I were not comfortable with where his counts were since they were pretty low. We decided to not do the Temodar and NY said we could take 2 weeks off, do another round of Accutane, and then see where Eli’s counts were after that. For some reason, they are still on the low side and Eli had to have a red blood transfusion last week. So far his platelets have been hovering above the “transfuse” level, so we’re just getting his counts checked every M,W,F to make sure they don’t drop below 20. We go back to NYC for scans on May 17th and 18th. We also drew some blood tonight at the clinic and sent it to NYC to test for HAMA. Although, we are still being told that Eli is done with 3F8 since he met the four rounds that the 8H9 protocol requires. We are doing the HAMA test anyway because if he is HAMA negative and his counts are too low for Temodar, we will likely request to do 3F8 and see what they say. It’s possible his counts could be good enough for 3F8 and not high enough for Temodar. We really just don’t want his counts to get to where they can’t recover because we don’t really want to use his saved stem cells if we don’t have to and take the risk of reintroducing Neuroblastoma back to him (although he was technically NED when we collected them, he hadn’t had as many rounds of 3F8 then as he has had now). We would appreciate your prayers as we try to figure out “what’s next” for Eli. At times, it feels as though we are making some of the major medical decisions and just asking the doctors if they agree with our decisions. I thought it was supposed to be the other way around!
So that’s where we are on the medical front. At home, Eli is enjoying going to school and at night he loves to play t-ball. We also went to the CureSearch Walk at Blank Park Zoo on Saturday and had a fantastic time there. The weather was amazing and about 2,000 walkers raised $124k for Pediatric Cancer Research. It was a great time and we saw a lot of people we know and love there. Eli was especially excited to see Caden Larson and he got to walk with his classmate from Ankeny Christian Academy, Reegan, who we happened to run into at the zoo.
I always feel guilty about the fact that I don’t take the time to post long updates here, but it’s so easy to put up a simple Facebook status that my Facebook friends know what’s going on with Eli and when he’s getting transfusions and such. I know not everyone wants to sign up for Facebook, so I decided to start a Twitter account for Eli so I could post quick little updates (medical and non) that pertain to Eli. That way, everyone can see the quick updates on his Twitter page in between the CarePage updates. You don’t even have to sign up for Twitter, it’s a public webpage that you can check. So if you want to see what’s going on during the week, you can follow Eli at http://www.twitter.com/elihorn
At the CureSearch walk, it’s a big deal to have your own Team shirts created. So our great friend Kris Scheppler had “Eli’s Army” tshirts made in camouflage. She ordered a few extras, so if you are interested in an Eli’s Army shirt, just check the inventory page to see how many we have in your size here: http://goo.gl/lcNF Then go to www.elihorn.com and scroll down until you see the PayPal order button. Tshirts are $10 and shipping is $5, but if it adds $5 to each tshirt, I’ll refund the shipping because it should only cost $5 to ship two shirts ($7 for three). There is a very limited number of shirts available in each size. Be sure you check to see if the sizes you want are available before placing your order (if they aren’t, I’ll just refund your money). Here is a picture of Eli and Isaiah wearing their shirts (the kids sizes are digital camo and the adult sizes are regular camo):
Next weekend we are going to help bake a few things for a Cookies for Kids’ Cancer bake sale that our friend Kris is hosting at the downtown Fareway in Ames at 10am. If you’re in Ames next weekend, swing by Fareway from some homemade goodies!
That’s it for now. Thanks for sticking with us and for all of your prayers. For those of our fellow Neuroblastoma families, we are continuing to follow along with your journeys as well and you are in our prayers always.
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