A medical rage...........

 ........is what was brewing in the very pit of my being Monday. We had made another trip to St. Louis just two weeks prior to meet w/ our NF medical team. After being told that Koda's tumor has grown in the trachea area, the doc didn't want to "wait & watch" any longer. He asked us to please see the oncologist within their facility to start or at least discuss the next medicine Koda would be taking to at least stabilize the growth if not shrink it. So in-fact we did; made another appointment/trip to St. Louis to do this very thing. 

I won't go into all the rage of thoughts and emotions this mom had.......there really is no point; because anger doesn't solve anything. The rage didn't make anything else happen, it really didn't do anything for myself or Koda except make for a very upsetting ride home. I was planning on venting here about how no one really knows in the medical field it's just an educated guess.........and I don't know that they really care it's just money in their pocket; you know the same reason we all go to work.......money. Well that was another rage was the money we had put out in traveling, eating, co-pays, etc to make this trip. That money vary well could have been our grocery money for the week, or a gas money to get to work for the next couple weeks.......not only setting us behind but putting Koda out of his "schedule" which is so very important to keep. One day off makes for a whole week off for him. Just some of the thoughts that ran through my brain at the time. 

The appointment was just a pure waste of time, the doctor not only had not had time to review his MRI results, but had not even looked at his file until 5 mins before. She stated "he looks good, so I don't see why he would need to have any meds"..............that's all fine with me too if he doesn't need them, or no chance of helping then I don't want him on any unnecessary medications especially with the side effects that most of these meds have. BUT............didn't you just say you didn't have time to look at his file or the MRI; how do you know by looking at him? Now, I laugh.......it's ok; because I needed this time to sort some things out myself:

Koda has been allowed to be diagnosed w/ NF & this large plexiform neurofibroma for a reason......whether I like it or not; so where do we go & how do we go about it now. The doc stated she would "try" and put Koda on this Thursday's Tumor Conference (today). Wow, they have tumor conferences.......to bounce off of each other what the best educated guess is (like on the TV show "House"). Some of the most educated people right now are flipping burgers due to the economy...........multiple degrees, etc; so are these people that I have been taking him to really the ones that are suppose to be directing us at all? That's the question I have now.

We have the right & should question everything when it comes to our kids! I'm doing that..........so just in the right moment of it all; the clinical scientist, doctor and director for Washington University's NF Center, which is the world's largest research center for NF is coming to KC for a "ask the doc" conference this Saturday. He actually works at St. Louis Children's hospital; probably where I should have been going to begin with. YES, I'm going to the conference! So instead of being angry, I decided to look at this as glass half full......because my very answer may just be at that conference this weekend. Maybe Koda doesn't need to be on these meds at all, maybe just maybe he's suppose to end up with a trach, be on a breathing machine, be on a feeding tube.........just maybe he is. Ohhhh don't doubt for a second that I don't believe in miracles & have faith in a very powerful God & prayers...........but sometimes He allows these things to happen for the good. Really, I've seen it first hand! Am I going to stop doing anything for Koda & just let it happen like that.......NO I'm not stupid and heartless! I don't want for any bad thing to happen to any of my kids, but I need to face the reality of life as well & of this disorder. Koda isn't go to die, but he may have to face many trials along the way as so many of us do. We without anger, as parents, just need to be there to guide him in the best way possible, and with all the prayers do everything we can to make him be the best he can be.

...........is still something that touches every nerve I have, but anger doesn't solve it! Love does!