Just a quick note to let you all know that you can continue to pray for Eli’s counts to rise! 10 days after his counts hit zero, he is still very neutropenic. We had gotten platelets on Thursday to take us through the weekend and we went in Monday afternoon to get counts and he once again needed platelets AND red blood. Since we went in so late, we didn’t get out of there until 8:15pm! His WBC has been bouncing around .3 and yesterday it was .2. His red blood was 6.8 and his platelets were 7. Yikes! Today we have the day off and tomorrow we go in to get his counts checked again and to do a “flow study” for his Omaya port to make sure it is functioning correctly. Eli’s scar has started to look red and potentially infected, so we have been putting a topical cream on it and I think it has been helping. We literally saw a Nurse Practitioner on the street today (68th Street and 1st Ave in fact) and she wanted to see how it was progressing so she checked him out on the street. I wonder if we’ll get an office visit charge for that one. 🙂 Serves us right for walking by the hospital on our day off! He didn’t mind, he loves Linda because she’s quite silly.
As many of you know, Uncle DoDo (my younger brother Adam) arrived today to hang out for a few days (Aunt JoJo is too preggo to be riding on a plane, so she had to stay back). Eli has been counting down the days to Adam’s arrival and was SO excited to wake up to Uncle DoDo being in the taxi on the way to the Ronald! For those of you that ask about the name Uncle DoDo, that was given to him by Eli when he was not quite two years old yet. He couldn’t say Adam, so he said DoDo instead and the nickname stuck. His wife’s name, Jordanne, got shortened to JoJo for consistency. 🙂 Adam and Eli share the same birthday (Feb. 15) and are exactly 20 years separated in age. There goes my excuse for ever forgetting my brother’s birthday! Today I asked Eli what he wanted to do and he matter of factly said, “Go to Toys R Us!” I thought that was pretty random and we hadn’t been for a long time, so we all walked down to Toys R Us (mask included) and stopped by a few landmarks on the way down like the Apple Store and Baskin Robbins. It was a good 5 mile walk (make no mistake, Eli walked about 10 steps total since he was in his stroller the entire time) and a gorgeous day (70 degrees and sunny today, but tomorrow it goes up to 80). It was a nice way to welcome Adam back to NYC. Tomorrow will certainly be less fun with blood draws, Eli’s first Omaya port access, and scans to see where the “dye” goes that they’ll be injecting into his head.
We are still just waiting for Eli’s counts to come up and for him to avoid getting a fever that will send us inpatient until they rise or until we do a stem cell rescue from our “banked” supply. I believe they will do a stem cell rescue if it has been 4 weeks since chemo and it has only been about 2 so far. Obviously we’d love to avoid that if at all possible. We are sticking with the nightly GCSF shot in the leg, which you can imagine he would love to discontinue any day now. He does a great job though with the shot and with taking his daily medicine (down to just Bactrim 3 days a week and we give him a daily Acidophilus to regulate his stomach – cancer parents, if your kid struggles with diarrhea, ask your NP about Acidophilus. It’s over the counter and has worked wonders for Eli, but it was Lacey’s idea, nobody proactively suggested it as an option.)
My Facebook followers know that we now have Iowa Hawkeye football players wearing Eli bracelets and praying for him! I had a call on my cell phone the other day from an Iowa safety (Tyler Sash) that was just calling to hear about Eli since he got an Eli bracelet from talking to a few, get this, Cyclone football buddies (Austen and Mike). That’s right, some of the Hawkeye football players are actually friends with the Cyclone football players. I think that about blew Eli’s mind. 🙂 Anyway, we certainly appreciate all of the prayers and don’t forget, if you need an Eli bracelet (or if you had one, but it broke or you gave it to someone else), just e-mail bracelets@elihorn.com to get instructions on how to get replacements! Just be aware that it will take a while to get them because we can’t send them out until we are back in Iowa!
That’s it for now. Thanks for keeping Eli in your prayers, especially that he remains fever free and that his counts start to rise!
Oh, and by the way, the St. Baldrick’s Event in Ames was a huge success. We don’t have the final numbers yet, but they easily beat their $7,500 goal and there is still money coming in. Thanks again to everyone that made that event possible and for everyone who supported it and made donations!
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