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Well, we almost made it two years without spending the night in the hospital, but we didn’t quite make it! The last time Eli was inpatient at a hospital was March of 2009. Unfortunately, on Saturday morning, Eli woke up with a severe headache and a fever of 101.2. Since his counts continue to be low, there was no question that we needed to head into the ER.
They took blood cultures and started an antibiotic. He did test positive for a virus, so they are continuing to give him the IV antibiotics. Usually they wait for the ANC to start improving, but we explained that with Eli that could actually be weeks, so the docs said they can be flexible on that as long as his blood cultures are ok. He hasn’t had any more fevers, which is good!
We consulted with NYC and agreed to stop the oral chemo (Temodar) that he has been taking. He made it about halfway through his last round before having to stop, so I’m guessing they might wait for his counts to rebound and then finish out the round, but we’ll have to wait and see.
It’s interesting being here because we actually haven’t had to be inpatient at Blank in Des Moines before. We have been up here on the fourth floor to finish blood transfusions late in the afternoon since the Hem/Onc clinic is only open until about 4pm, but we’ve never stayed overnight. It’s a nice place and everyone has their own room (which is something to never take for granted). We had our own movies and Wii, so we’ve been keeping entertained with a lot of Mario and some crafts from Child Life. Eli even had a visit from his awesome Kindergarten teacher who brought in cards that his classmates made for him in class!
The doctor situation has also greatly improved here since 2007 when the head Oncologist told us that we should probably go to NYC to get our chemo done because if something bad happened to Eli, he wouldn’t want to be responsible for taking direction from Dr. Kushner in NYC. Thankfully, that doctor is gone and Dr. Woods has been amazing in helping us with blood transfusions and such while we’re in Iowa so we don’t have to make trips out to NYC for every little thing. 4 months ago, two more pediatric oncologists came onboard and we were able to meet them over the past two days.
Lacey and I spent about an hour with one doctor yesterday, Dr. Roke, who was very interested in learning more about 3F8 and 8H9. 15 minutes into our conversation, he asked me if I was a physician. I think that’s pretty normal when a doctor is talking to a parent that has been dealing with this for over 3 years. 🙂 He came up from Houston and had actually interviewed in NYC with Dr. Cheung at MSKCC for an internship, but decided he wasn’t keen on living in the big city. By the end of our conversation, he was asking me if he could put another family in touch with us to talk about antibody treatments in NYC and that he would like to consider recommending them to MSKCC after hearing how well things worked for Eli. He was also impressed that Eli has never had a transplant. Then this morning I met the other pediatric oncologist, who immediately started talking about working with NYC and doing what she could to get us out of here. So to say that the pediatric oncology physician situation at Blank in Des Moines has improved would be a dramatic understatement. We are thrilled with the doctors here and are so happy to have some truly caring physicians that are looking out for the absolute best interest of the kids. As Dr. Roke said, “If it were my child, I wouldn’t hesitate to send them to MSKCC in New York. They are the real experts.”
So we are just waiting to be told when we can go home and trying to find ways to pass the time. The oncoming snow storm should make things interesting as far as getting home if we do get released. We’ll just have to pay it by ear. Of course, thanks to everyone who has been praying for Eli to remain fever free and for his counts to rise!
I mentioned Eli’s time in OKC at the International Finals Rodeo in the last update. This week, we got news that thanks to one of Eli’s great new friends (a pickup man named Dennis), they have named a bull “Eli Horn” and it will be in the bucking rotation in a few years. How cool is that? Also, I got a copy of a picture of Eli with Cord McCoy (remember him from The Amazing Race where he raced with his brother Jet?). I send the pic to Cord on Twitter with the title “Cord McCoy meets the famous Eli Horn” and he replied back, “i’ll be getting his autograph before you know it!” 🙂
@elihorn i’ll be getting his autograph before you know it!
Here are a few pics from our stay so far…
What a great name for a bull!!!! I bet he will be the toughest, most stubborn bull on the circuit!!! (But also, ‘sweet on the inside”!)
Let us know if you need a ride home from the hospital…John can come down with the 4 wheel drive Yukon…room for all of you, and lots of traction!
Praying for you guys! (Thanks for re-setting me Aaron, I’m getting caught up:)
Just a note to say get well soon! I am keeping you in my prayers!
In Christ’s love,