Monday, November 26, 2012

Osteoblastoma and Christmas


We recently found out that our 6 year old, Cameron has an Osteoblastoma in the temporal region of his head. More specifically it's on the right side by his ear. Osteoblastomas are fairly rare to begin with, but to have one in the temporal bone is even more rare.    It has compromised the hearing in that ear.  And everyday we notice that its getting worse.  Today we were up visiting my mother in law at her office and one of her friends had stopped by to visit before we got there.  My mother in law asked her to stay so she could talk to me about her experiences with Primary Children's Hospital.  Which were all good and relieved me of several of my fears.  I was afraid for Cameron when they put the IV in because the time he's had it done before wasn't a pleasant one.  I guess none of them really are pleasant but the lady who did his last one when he was about to get his MRI done started to put the needle in and then Cameron screamed and pulled his arm back, pulling the needle back out and so 3 of us had to hold him down while she did it again.  I felt horrible for him.  I never want to have that happen to him again cause he was so scared and it hurt him really bad.  So I was worried about how they were going to do it and if they could possibly put him to sleep first.  She said that they either give the kids a little cup of good tasting liquid that makes them loopy, or they give them a gas to breath that makes them loopy so they don't care as much or they put a numbing cream on them to make it not hurt.   
    Plus I was worried about whether or not I'd be allowed to stay in his room with him because I had promised him that I would be there when he woke up.  I want to keep that promise,  but I also just don't think I'll be able to stay away from him that long.  
    She said that they are so good about not only calming down the kids who are there to have surgeries, but they are also excellent about calming down mom and dad as well.   And since the waiting room will be full of family, hopefully they are good at calming down Grandma's and Grandpa's and aunts and uncles and whoever else. 
    She told him that they will let him play video games and that he can have his favorite stuffed animal or blanket with him the whole time.   And that they would pull him around in a wagon when he was well enough. He was pretty excited about the wagon and video games. :)  

    I am worried about a lot of stuff.  And I really, REALLY hate the not knowing.  Yes I know, or at least they think they know what it is, but until they do a biopsy, they won't know for sure either...  We don't know when the  surgery will be.  Not even what month it will be. That makes any plans for Christmas we might have put on hold until we figure out what is going on.   We don't know for sure where it will be.   I am getting tired of going to doctor appointments just to TALK. I really want to some freakin' answers!!  But since this will be the 4th doctor we've talked to and he has yet to see Cameron. I understand why we are talking but I want it done now.  I am being whiny I know, but I hate to look at him and know that he is either hurting or that he can't hear anymore.  He has always been so healthy and when he had pink eye when all this started, that was the first RX I had ever filled for him.  (Also, as a side note, I learned that human breast milk works to get rid of pink eye really fast and is better than the drops. You can Google the why's of that if you really care.) 

     I am worried that the doctor won't be able to do the surgery until January.  By the time we go, it's the first week of December, and he only does surgery on Tuesday's so the soonest they could do it will be the 11th, or the 18th.  The next Tuesday after that is Christmas and the next one after that is New Years so the next one he'd do surgery on is the 8th of January.  I know that specialists book out weeks in advance for surgeries and that the end of the year is bad because either the doctors take their vacations or because everyone wants to get their surgery done before the end of the year.   I was thinking it would be a good time for Cameron to have surgery since he can miss most of December and he won't miss that much school because of Christmas break.  I don't want him falling behind, and you'd think he's in Kindergarten how far behind can he get?!?  VERY.   They have weekly homework plus several sheets that they do in class. I've already talked to his teacher so she knows everything and is going to send home stuff for him to do. 

 But is it wrong to want the surgery before Christmas?? Would his Christmas be totally ruined by having surgery right before it? Would it be better for him to wait until January to have his surgery??  I honestly don't think I can wait until January and stay sane!  I am NOT a patient waiter.   These are the types of questions plaguing me.


   I would like to say a big huge THANK YOU to all our friends and family for all your amazing love and support you have given us!!! We are truly overwhelmed by it all!!! You guys are AWESOME SAUCE!!!