(no subject)
Logan came out of surgery at about 9 PM. They reached a point where the surgeon couldn't distinguish tumor from brain stem, so they decided to stop. The surgeon estimated that he was able to remove between 50 and 75 percent of the mass, but that will be confirmed this weekend when he has a post-op MRI. He did extremely well during the procedure and afterward. They'd planned to leave the breathing tube in overnight, but he was breathing on his own very quickly so they removed it before they even brought him back to the PICU. He was stirring and complaining ('owie', 'don't like that') when we saw him, and opening his eyes and thrashing his legs, but not really awake.
During the post-op meeting with Dr. A, he said some things that were hard to hear. First, he's actually NOT sure if it's brain tissue or not, which was really disappointing to me. I guess the mass was sort of pressed hard up against the brain stem so he couldn't see if it was actually rooted in the stem or not. Second, the quick drop freeze pathology showed a lot of cells, which generally (but not always) points to a malignancy. Because of this and because he wasn't able to remove the entire mass, he's pretty certain that chemotherapy will be involved. That's pretty much the moment that I felt my heart just break into a million pieces. I can't even begin to describe how it felt and how it still feels now. I'm angry and frustrated that the damn thing doesn't seem to be just plain old benign. I was hanging so much hope on that possibility this week. It's a lot of what got me through - the hope that maybe it would be a benign mass and that our life would return to 'normal' sooner than later. And that my sweet natured 4-year old who everyone loves wouldn't have to feel the pain of ongoing treatment.
I'm pissed that this is happening to me and not to someone else. Not that I think it should ever happen to a child, but if I could choose and have Logan be well, I'd probably throw a dart and let it hit some other kid. Some little punkass jerk who sets animals on fire and hits other kids for no reason. I know that's awful and I'm sure I'll feel bad about saying it later, but my feelings are just so raw and incredibly painful that it's really all I can do to express them in writing. But I need to do it so I can track this horrible, frustrating, completely unfair journey we're on so I can try to make sense of it some day. And besides, I know that if I were reading this, I'd feel badly for the writer, but I'd also be quietly thanking God that the writer wasn't ME; that I wasn't facing her situation. I think that's very human. I mean, I have a friend whose little boy also has an odd tumor in his mouth, but she found out yesterday that her son's mass is benign. I'm jealous that I don't get to experience that kind of elation. I know I should add 'yet' onto the end of that sentence. I know I should just believe he'll be okay, since it's all I can do. I know I should realize that even if a long, hard road is ahead, we could wind up with a win in the end and a huge victory party. But it's almost like I can't let myself hope for anything. I hoped so hard today and I feel so let down that it's almost hard to breathe.
So we wait for pathology. It'll probably be about a week, which sucks. We have to find a way to deal. I know we're scared to death over it, and I also know there's nothing we can do to make pathology move any faster. I can't believe this is happening to us. I'm angry at God but still feel a very, very small bit of hope that Logan will be okay eventually. So I guess I'm hanging on by a thread. I'm sure the next few months will be filled with lots of emotional ups and downs. People keep telling me to be strong and telling me that I am strong and I just think 'I don't WANT to be strong. I WANT to be wussy like everyone else whose kid doesn't potentially have cancer'. I want to be able to look at someone going through my present situation and think 'dang, I'm so glad that's NOT me'.
I hate this.
During the post-op meeting with Dr. A, he said some things that were hard to hear. First, he's actually NOT sure if it's brain tissue or not, which was really disappointing to me. I guess the mass was sort of pressed hard up against the brain stem so he couldn't see if it was actually rooted in the stem or not. Second, the quick drop freeze pathology showed a lot of cells, which generally (but not always) points to a malignancy. Because of this and because he wasn't able to remove the entire mass, he's pretty certain that chemotherapy will be involved. That's pretty much the moment that I felt my heart just break into a million pieces. I can't even begin to describe how it felt and how it still feels now. I'm angry and frustrated that the damn thing doesn't seem to be just plain old benign. I was hanging so much hope on that possibility this week. It's a lot of what got me through - the hope that maybe it would be a benign mass and that our life would return to 'normal' sooner than later. And that my sweet natured 4-year old who everyone loves wouldn't have to feel the pain of ongoing treatment.
I'm pissed that this is happening to me and not to someone else. Not that I think it should ever happen to a child, but if I could choose and have Logan be well, I'd probably throw a dart and let it hit some other kid. Some little punkass jerk who sets animals on fire and hits other kids for no reason. I know that's awful and I'm sure I'll feel bad about saying it later, but my feelings are just so raw and incredibly painful that it's really all I can do to express them in writing. But I need to do it so I can track this horrible, frustrating, completely unfair journey we're on so I can try to make sense of it some day. And besides, I know that if I were reading this, I'd feel badly for the writer, but I'd also be quietly thanking God that the writer wasn't ME; that I wasn't facing her situation. I think that's very human. I mean, I have a friend whose little boy also has an odd tumor in his mouth, but she found out yesterday that her son's mass is benign. I'm jealous that I don't get to experience that kind of elation. I know I should add 'yet' onto the end of that sentence. I know I should just believe he'll be okay, since it's all I can do. I know I should realize that even if a long, hard road is ahead, we could wind up with a win in the end and a huge victory party. But it's almost like I can't let myself hope for anything. I hoped so hard today and I feel so let down that it's almost hard to breathe.
So we wait for pathology. It'll probably be about a week, which sucks. We have to find a way to deal. I know we're scared to death over it, and I also know there's nothing we can do to make pathology move any faster. I can't believe this is happening to us. I'm angry at God but still feel a very, very small bit of hope that Logan will be okay eventually. So I guess I'm hanging on by a thread. I'm sure the next few months will be filled with lots of emotional ups and downs. People keep telling me to be strong and telling me that I am strong and I just think 'I don't WANT to be strong. I WANT to be wussy like everyone else whose kid doesn't potentially have cancer'. I want to be able to look at someone going through my present situation and think 'dang, I'm so glad that's NOT me'.
I hate this.