Thursday, April 5, 2012


I know most people, if not all, have stopped following this blog...I don't blame any of you, I was horrible at keeping it updated. But, for any who might still stumble upon this I thought I'd throw a quick update in.

Oakley has been doing FABULOUS! He has now been in remission for 8 months. Yay! Since January of this year his activity level has just shot up! He is an incredible little guy. He loves going to preschool and gym. He says he has so many friends at school. He wants to take swimming lessons this summer.

We are still making trips to utah though they are much more sparse. Right now we're concentrating on the stricture that he has in his esophagus. This is a scarring in his lower esophagus about 5 cm long. They doctors say it is due to radiation recall. When he received one of his chemos it caused the body to react as though it were getting more radiation which caused the build up of scar tissue. We spent many months, (2x a month) driving down for esophageal dilations. They would go into his esophagus and stretch it out. We weren't getting the lasting effect we hoped for so the next step was an esophageal stent placement. This is a "continuous" stretching of the esophagus. They place a mesh wire tube (think chinese finger trap) down into the esophagus to hold it open. The first one went in last November. He had that in for 2 months and about 2 weeks after it was removed, we found ourselves back down in UT for another dilation. This dilation lasted almost 2 months. We thought we were home free...

Needless to say, we found ourselves back down in February having another stent placed. We just got back this past week from having that stent replaced. It had been placed a little too high so he was having fluid build up in his lower couldn't be pushed into his stomach because his esophagus wasn't able to work properly with the stent. They think that he may have aspirated several times over the course of his stent being placed in February. So, he is now on oxygen until he can maintain a high enough O2 reading to get off. If it's not one thing it's always something else! And, through all of this, he still remains upbeat. He still remembers to thank his Heavenly Father for making him feel better. What a inspiration! We'll keep him around for as long as we can! :)