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I’d love for these updates to be all good news and encouraging, but unfortunately that’s not always going to be the case. The last two days have been pretty draining. It started yesterday with a failed MIBG scan. Eli couldn’t take the sedation medicine because it was by mouth, and he is starting to throw up anything he has to take by mouth. Plus, it’s a LOT of medicine and it tastes really nasty. So they tried to give him a mild sedative via IV to do the trick, but he has to lie perfectly still for 20 minutes or else the entire test is ruined. It’s like taking a picture with a very slow shutter speed. Any movement and the picture turns out blurry. Even if that movement is 19 minutes into the 20 minute picture. So after 3 or 4 failed attempts (darn itchy nose), we had to resort to amping up his IV meds. That ended up working enough for one 20 minute shot, but they didn’t get nearly the ones they needed done. Eventually the IV meds had an opposite effect and he was wide awake.
So yesterday was a flop. They were able to get us in first thing in the morning today for a retry. This time they brought in the anesthesiologist and put him out cold. Since the radiation was wearing out in his body, each test took 25 minutes instead of 20. Also, the anesthesia basically made him irritable and tired the rest of the day, so we really didn’t get any quality time with Eli at all today.
The worst news came once the doctors had reviewed the MIBG scan. They had originally told us from the bone scan that there were no tumors on the bones. However, the more specific MIBG scan results confirmed that the few areas they were wondering about turns out to be positive tumors on the bone, which we were told is difficult to remove. They seem to be on his spine, hips, and legs, but it’s all still preliminary and we don’t have the final, final report yet. Either way, there is definitely tumor on the bones.
So one of our only pieces of positive news turns out to be negative after all. A pretty big emotional setback. The only positive thing is that they don’t change the treatment at all based on this news. The way they handle those are the same way they handle everything else. They go through hard hitting chemotherapy and hope it gets rid of the tumors on the bones, too.
The nurse educator did tell us that if they felt things were hopeless, they would definitely tell us. If they feel the process of fixing Eli was going to put him through a lot for no chance of survival, they’d honestly tell us. They have had to do it in the past for some families. They have also successfully treated neuroblastoma like this in the past where it was on the bones and everything at Iowa City. Their plan for curing it is not for the next few weeks, it’s many months into the future, so there is still some chance. We obviously know that if it’s God’s will, there is a 100% chance. I guess the take away of the day is to keep praying. I’ve told God I’m going to be like the persistent widow who came before the judge day after day after day until she wore him down and he gave her what she was asking for (Luke 18:1-8). A day isn’t going to go by that I’m not going to ask God to heal our son. The fact that there are others praying the same is great encouragement.
1 Peter 5:7 – “Casting all your anxieties on him, because He cares for you.”

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