I just got in from the endocrinologist with Tristan. He had his blood work drawn last weekend. His cortisol was up from 8.2 to 9 and his ACTH level was exactly the same at 166 (normal is 10-60). What this means is that his body is making a normal amount of cortisol (a good thing) but his adrenal gland is straining to do this (not a good thing). So what does this mean? Dr. Slyper's feelings are mixed. It is great that Tristan is able to make an adequate amount of cortisol on his own "to get him by" but it is worrisome that he isn't making enough to protect him during stress. We have been pretty lax about his stress dosing in the last year or two but we can't do that anymore. We now have to be really diligent in order to protect him from going into crisis which could happen very easily. The question really is where do we go from here. We need to get Tristan to be producing enough cortisol to protect him during stress. Dr. Slyper feels that a level of 10 is the magic number. If he can reach a cortisol level of 10 on his own he feels that would be a strong indication that his adrenal will fully recover. He still feels this is possible but each time we get his blood drawn and he still isn't at 10 it is a step closer to it not happening. His plan is the following: we are lowering him again (which is good timing considering the fact that school is out next week and I can watch him like a hawk) as long as he continues to not show severe adverse reactions to this we will stay at that new dose until July. He said we may start to notice some changes in his energy level an fatigue setting in. As long as it isn't life altering we should press on BUT it may take a toll on him this time. As of right now tristan is taking half of what his body requires so he will now be taking elss than half of what eh needs to sustain him and depending on his body to make up for what we aren't giving him. This is a scary step! In July we will draw his blood again and hope his level has hit 10. If it does then we will continue and Dr. Slyper feels we will KNOW that recovery is going to happen. If we don't get to 10 we will continue on this dose until September for more blood work. Then we will be facing one year of enduring this process. If he isn't at 10 by then we basically have to make a decision. He feels that at the year mark if he hasn't reached 10, the best thing to do will be to put him back on the dose he should be getting and realize this isn't going to happen. My feeling is maybe if we get there it will be time to look for ANOTHER doctor AGAIN.............and I already know where we'll be heading....to Michigan to the largest adrenalcortical carcinoma center there is to Dr. Gary Hammer. So we are praying for another miracle here. Getting his cortisol to go from 9 to 10 seems so miniscule but it is so huge! If he can do this then it is just one more thing that has proven EVERY doctor wrong! The hard part is that we have no control over this. It is something that is either going to happen or not but there is nothing we can do to help it along other than try to keep him as healthy as possible so he doens't need to get stress dosed for anything. So PLEASE keep your fingers crossed that in the next two months his adrenal gland starts kicking butt! LOL! All kidding aside, I know we have so much support from all of you and I thank you so much for that. This journey sometimes feels like it is never ending and I know we couldn't continue to fight every day without having so many people in our corner rooting for us. If you pray please say some prayers for Tristan. This is probably the biggest break he could get aside from his cancer not coming back. To be able to get his adrenal gland working after 11 years of being told it was dead would change all of our lives! Especially his, it would allow him to be a kid for once in his life! Can you even imagine?
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