Word of the day? REMISSION
We’ve been MIA since school has started, with only a few updates via Instagram. Sorry about that!
I swear that we’ve been busy, I haven’t been just sleeping in while the kids are in school. I mean, I have been, but other things have been happening, too. In the past few months, we have made some changes in Hank’s care team. We’ve switched to a new Gastrointestinal doctor as well as a new nutritionist. Choosing to leave our previous office was based on the want for additional information and care, as well as, recommendations from our local EOE social media family.
When we made the change, I don’t know what I thought would happen. Did I think that a new doctor would have all the answers that the previous one didn’t? Like maybe there was new information and studies that I hadn’t heard about that the new GI knows about? Maybe I did. But she didn’t. The new GI sat down with us and explained that we were already doing what was needed for Hank’s care. But that it had been too long from the last scope, so lets schedule that, shall we?
The scope was done at one of the area children’s hospitals and it was night and day, our experience from the previous facility. From the care of the team, to additional child advocates, to even having toys for the kids (even Dave!) to play with while we were there. The waiting area was another amazing place. My experiences from the previous place were PEANUTS! PEANUTS EVERYWHERE! To now, no one was allowed to bring in food or drink. Signs were everywhere about how their tiny patients were fasting and for their sake, no food or drink were allowed in the waiting area at all. It was mind blowing.
BUT WAIT! THERE’S MORE!
The procedure took the same amount of time as it usually does, for reference, it was the blink of a lazy dog’s eye. Seriously, it is a really quick procedure. We met with the GI and her resident and got the most amazing news.
HANK’S ESOPHAGUS LOOKED LIKE A NORMAL ESOPHAGUS!
I ugly cried in the waiting room. We had never seen a “normal” esophagus before. Like, ever. We were given the pictures and I couldn’t stop staring at them. There was a polyp, but if the Dr wasn’t worried, then neither were we.
Waking for Hank after being sedated has usually been an awful experience. I have talked about hearing him crying before finding him. However, this time, he woke, asked for juice and was hazily watching a movie when I got to his recovery area. No tears, no crabby – just wobbly. It was amazing.
Later in the week, I got the call about the biopsies. Polyp was nothing. Sweet! The eosinophil count was (wait for it) not of significance. Like, there were none to even give me a number count. Do you know what this means? It means:
HANK IS IN REMISSION!
Right here, in my celebration, I am stopped and asked, “Wait, remission? But this isn’t Cancer….” Or “What in the hell? He can have remission? What does that even mean?” “Is he CURED?”
No, it isn’t cancer. Yes, he can go into remission. Sadly, no, he isn’t cured. What remission means for his disease, is that he still has it, however, it is not currently active. He hasn’t had a flair in months and hasn’t been in pain for the same amount of time.
So, he’s in remission. What comes next? The food challenges! A very scary time of trying out foods that we have already decided, through testing and “try and see” methods, to see if we can bring any back into our menu. So, my friends, first up is SOY. Will there be puke? Will Hank be covered in a rash? Will soy prove to be no match for my little boy? Find out next time, folks. Same Hank blog, same Hank webpage.