Neutropenic

How was your weekend? Ours was very neutropenic! For those of you new to the updates, that’s not a good thing. Eli’s white blood cells were ZERO on Friday and his platelets and hemoglobin was low enough that they decided to transfuse both before the weekend so we’d make it through. Sure enough, his platelets were low again today and needed another transfusion. The eating hasn’t gotten any better and the Megace is still causing Eli to vomit like clockwork. The nutrition test today was encouraging in that he isn’t dehydrated, so whatever liquids he is getting are doing him some good. This is the probably one of the hardest hits he’s ever had from chemo as far as how he feels. He is just always tired and feeling bad. All he wants to do is lay down and not talk/eat/move. Even the nurses are commenting that it just isn’t the Eli they know.

Right as we were finishing up the IV Bactrim today, he hit 38.1 degrees. The rule is, if you hit 38.0, you go inpatient for a neutropenic fever. Even though he immediately dropped back down to 37.6 after that, it was too late. He hit the magic number for 5 minutes, so he was going inpatient. They actually got the antibiotics taken care of right away before going inpatient. Unfortunately he got put in a room with a teenage boy, which means no visitors under 11. Let the rotating visitation for Lacey and I begin! The good thing about being inpatient is that Eli is going to get nutrition tomorrow. They didn’t want to put him on nutrition without making him inpatient because they need to monitor him for the first 24-48 hours that he is on it. Once everything is set, he can be sent home on nutrition, but we would have had to have come inpatient for that if we wanted to hook him up. He has lost another pound, so even though they tell us not to freak out too much about his nutrition, we are happy he’s going to be getting some assistance when he’s not eating! We’ll be here until at LEAST Thursday, but hopefully not too much longer than that. Just depends on how he is doing and if his cultures come back clear and he’s fever free!

We did get to go to Central Park with our new friends from Minnesota and their 18 month old little girl over the weekend. Eli never left the stroller, but it was good to get him outdoors anyway. It’s great to have met a couple here that is our age and calls Coke “pop” instead of “soda”! 🙂 We also got to go to a birthday party for little Emmanuel at the Ronald last night. You might remember him as the little Neuroblastoma boy that may actually like Spiderman more than Eli. He’s a true fanatic! He turned 4 and is feeling about like Eli is. They had the exact same chemo cocktail at the same time and they both got admitted tonight at the same time. Too bad we didn’t get put in the same room!

Please say a prayer for Kieran, another little guy with Neuroblastoma, who just got news that he has relapsed in the brain. One tumor on his brain, about the size of a nickel, that they are going to surgically remove on Friday. That is the second set of friends that got “relapse in the brain” news in the last 2 weeks. Like I said, this can be such a roller coaster ride for the parents. While I’m throwing out prayer requests, also remember Eli’s “blastoma brother” Coleman (carepage: ColemanScott) who is back in Iowa City getting ready to start chemo to prepare him for a stem cell transplant. Coleman and his twin brother Caden are an absolute riot and it will certainly be hard for those boys to be apart for the times they are going to need to be. Also, our friend Mikayla is back in Iowa City with a fever and ear infection. As we continue to make friends (in ways we never want to make friends), our prayer list gets longer and longer. I know all of us appreciate it when you take the time to add us to yours. We never get tired of hearing that you’re praying for us. All of your message board posts and e-mails get read at least once if not over and over again!