Hey everyone — just wanted to give a quick update for Lewis’ recovery. We’re so, so thankful for how well the surgery itself seems to have gone. We finally got a chance to look at the post-op scans yesterday, and it was just so amazing to see that big tumor completely gone. We asked our doctor to repeat the words “went perfectly” and “better than expected” when we saw him again. It still all seems too good to be true.

To be clear, there will always be a chance of recurrence — even in this case, which is considered a gross total resection (which feels amazing to say!). But we know that just a few undetectable tumor cells left behind can result in regrowth, which means that we will watch closely over the coming months and years to make sure it doesn’t come back. Our prayer is obviously that this will be the last treatment Lewis will ever need!

We haven’t had much time to sit in the good news because recovery has been really challenging. Lewis spent the following 24 hours after surgery in what we think was a sedation/opioid delirium in the ICU, which was horrible. It ended on Wednesday with us getting a quick MRI and putting him back under anesthesia, which seemed to reset things - but putting him back under anesthesia without an anesthesiologist was also terrifying. Once we got him off some of the harder medications, he slowly came back to us, but he’s still had trouble sleeping and eating.

Now, we’re also dealing with his diabetes insipidus, which was a result of cutting off the pituitary during the surgery. He still hasn’t gotten the sleep or food he really needs, and we’re now having to carefully manage his fluid intakes. It’s been really hard, especially knowing he’s been through so much and just wants to get out of the hospital. Our prayer request is that we’d be able to figure out the correct dose of medication to deal with his DI without too much more struggle for Lewis. He’s a champ, but it’s been really hard on him & he is sick of being in the hospital.

The doctors tells us that he’s otherwise been healing really well. They all seem rather impressed by just how well he’s doing. The concern about a brain fluid leak through his nose was always a big risk, but so far, things appear to be healing really well. We’ll know for sure about that by this weekend. It’s amazing to see him bounce back somewhat quickly once we got over the delirium, especially since there’s very little evidence on his face or head that he just had brain surgery! It’s amazing. He is still his funny little self & it was the best thing to see his personality in little bits when we got back to him post-surgery.

As of now, it looks like we could get discharged from the ICU by possibly Sunday, but there’s a chance we may be looking at one more small procedure while we’re here. The day is to be determined, but we will likely be removing his ommaya catheter (yay!) and doing a final cleaning of his nasal passage to ensure it’s all healing correctly. We’ll post another update for when this is happening, but if you would, please be praying for another successful operation. Taking out his ommaya should be relatively easy procedure, but there’s risk of blood loss &/or the catheter being stuck, in which case we’d have to leave it in. We’d love to be able to take it out for good! We’re also a little worried about being admitted again after just getting discharged, so we’ll see how that goes!

So prayer requests for right now in the hospital:

figuring out the correct medication dose for his DI
coordinating surgery date for ommaya catheter removal
ommaya catheter can be removed easily & hospital recovery would go well
Lewis would stay in good spirits & move toward his normal sleeping/eating schedule

The past few days have a blur, but we feel like we’ve been held up by God through all your prayers and support. Thank you so much for all the encouragement and meals and texts. It’s keeping us going! It feels like we’re almost on the other side of the most difficult stuff, even if it still feels hard today.