A Surgery Date

    As promised, here is the update on Cameron's appt. today. 
   We went up to the University Hospital to meet with a new Doctor.   He's very nice and seemed very knowledgeable about what he was talking about.
  It is for sure a Giant Cell Reparitive Granuloma.  But instead of being in his jaw where they usually are, his is in his temporal bone area of his head.  

 He did some hearing tests, the kind with the tuning forks.  He doesn't feel at this time that Cameron's nerve in his right ear is intact.  He thinks its been damaged too much.  If that's the case, when he does the surgery ~ which will take 4 hours ~ he will just take the tumor and all the ear bones out and seal off his ear canal. So he will be deaf in that ear, but I'm totally ok with that.  Like one of my friends said, at least he can still hear out of the other one and talk.  I'm counting my blessing for sure that all he's losing is his hearing in that ear, it could be so much worse.   If he thinks the nerve is salvageable he'll save what he can and then we'll discuss rehabilating his hearing in that ear at a later date. 

   The whole highlights of Cameron's day was riding in the elevator, which he had never done before, and the cool way they looked into his ears. They had a setup that not only magnified the inside of the ears, but it sent a video image of it to two screens on the walls so we could see what they saw.  He thought that was awesome. Lol 

   The doctor told me that the tumor is affecting the facial nerve on that side because its attached itself to it, and depending on how much they have to manipulate the nerve to get it off, Cameron could have some facial paralysis but that it should only be temporary and be gone within two weeks.  There are other side effects or possible side effects that I can't remember right now, but they scared me.         

  The surgery is scheduled for Feb. 1st.  He'll be in the hospital 3-5 days and the recovery time at  home will be 2-3 weeks.     I  am so relieved to finally have a date, yet it's two weeks away. So on a plus side, it's giving me time to get things in order like my house cleaned really well so I don't have to worry about it as much when we come home, and making some dinners to freeze so Pat can just pop them in the oven while we're gone and for the first few days we are home so I don't have to worry about making dinner as well as taking care of Cameron.  I can also prepare the school for his absences, get in touch with his teacher and get a homework schedule set up for us.  But it's two weeks of waiting.... Again, not the worlds most patient waiter.    

  Dr. Sheldon said he was going to keep both the other specialists we've seen informed of what's going on.  I thought that was nice, but why?? Lol  although, now that I think about it, Dr. Major said we could do all of our follow up appt's with him here in town, so that's good he's keeping him 
informed too.    

He also asked me, since it is such a rare spot for this tumor to be if it would be ok if they wrote an article for a medical journal featuring Cameron and his tumor. Including pictures of him and his scans.  I said yes, but I want a copy of it when it's finished.  He then looked at Cameron and said, "you'll be famous!"  Cameron just looked at him and said, "yeah, so." Lol  oh I love my boy!!!  I also promised him that we could take a ride on the escalators that they have there when we go back in two weeks for the pre-op appt. 
(Updated here)  Dr. Sheldon said that he talked to Dr. Sharma and looked at the scans, and then went and researched Giant Cell Granulomas in the temporal bones, he found several cases recently, but they are all in Asia. He said that there are a few cases here in the U.S.  but he wants to do the study because he didn't find any in the English language that dealt with them as young as Cameron. 


  Well, I think that's all for now that I can think of. I'll update again later. 

**************UPDATED!****************

A tumor?? No, really? Shocking!!!

   A little sarcastic?? Maybe... 
 
   Ok, so I FINALLY get to touch base with the doctors office, after playing phone tag all morning. I was getting gas so I could head out of town and this was my phone call. 
 "Hello, is this Sarah?" 
 "It is." 
  "Hi Sarah, this is Gayla from Dr. Sharmas office and I wanted to make sure that you got my message about your appt. with Mountain Medical this morning."  
   "I got it, thanks." 
   "Ok, I was just making sure."
   "Yes, I got it.  Did you also have the results of the biopsy?"  (I thought that's why she called) 
   "Umm... Yeah, hang on a sec." 
   "Ok" 
    Wait for about 2 minutes..... 
   "Ummm... Did Dr. Sharma call you at all?"  
    "Nope. I've only talked to you." 
    "Ok, hang on a sec."  
  Wait another few minutes.....
    "Ok, well the pathology report says that it's not malignant so it's definitely NOT cancer. So that's good.  And it says that it is a tumor and will need to be surgically removed."  
     "Ummm... Ok."   I'm thinking, that's it! That's all your going to tell me?? I already knew everything you just told me!!" 
    "When is your next appt.?"  
   "You didn't schedule us one." 
  "Ok hang on a sec." 
Waiting for about 5 minutes......
     "Ok, so when we get the results of today's scans in, Dr. Sharma will present Cameron's case to the counsel (thing that they do) on Wednesday and then they will decide where to go from there. So you should get a call towards the end of the week." 
    By now, I'm running late to get to the imaging place so I just thanked her and hung up. And growled loud enough that the guy at the gas pump next to me looked at me like he wanted to ask if I was ok, but scared to do so because I growled so loud.   I smiled slightly at him, but it may have come out looking more like a grimace because he truly looked scared after that. If I see him again, I'll apologize.   She didn't really tell me anything I didn't already know except that its for sure not cancerous!!! Grrrr!!!!!!!! 

     When we got down to the imaging place (they totally rock BTW) we were a few minutes late and when we walked in I was asked if they told me they'd be doing another IV for contrast.  I said no. Thinking, it's a CT scan, they didn't do contrast last time and wondering how or why I tell Cameron that he's getting another shot.  So I filled out the paper work including permission to start an IV, took it back up and she tells me she asked and we weren't getting an IV today.  YAY!! So I tell Cameron, good news, no IV.  Then someone else brings me out a paper to sign and its a consent to start an IV!! I was like WTH??? So I signed it and politely gave it back.  Then they took us back and guess what?!?  NO IV!! Yay!!! But before they took us back, a doctor came out and says I have a question. I'm a bit confused.  Did they tell you it was a Giant Cell Granuloma?? I said no,that they only told me it was a tumor.  He said and where are we doing the scan??  I said right here, pointing to Cameron's ear.  I said I was told they were doing a fine cut temporal bone scan.  He said that's why I'm confused.  Giant Cell Granulomas are usually in the jaw. 

  I looked it up when I got home.  I can only find less than ten cases in the US of Giant Cell Granulomas in the temporal bone.   The two case studies I found were both adult males. None in kids. But both those guys had theirs on the right side too. 
      So I guess by the end of the week, I might know more... For now, we are, AGAIN stuck in waiting mode. 
  I'm so thankful to know for sure that it is not cancerous.  Everything else I can deal with. 
I'd also like to say, I'm not 100% sure that it is a Giant Cell Granuloma, cause she didn't tell me that on the phone.  She just said a tumor.  :/  which we've known for ever. 

  

Is this a normal Saturday night at your house too?

   Ok, first news (or not) on Cameron.   I will for sure hear something tomorrow about the biopsy results. They got them back and immediately called and made us an appt. with Mountain Medical Imagining for Monday. Then called to tell me about it.  I will either get a call from the doctor, or his assistant on Monday with the results.  I might have been able to have them Friday but for some reason my phone didn't ring and it didn't tell me I had a voicemail until I got another one on Saturday.  I'd hate to think I might have missed the appt. because my phone sucks!!! So we are going in for another CT scan, this one will be fine cut temporal bone scan.  But hopefully they won't be doing any contrast and so no IV. The last time we did a CT scan it was done in about ten minutes. I'm guessing this one might be a little longer, but still not too bad.  Cameron has been sick since just after Christmas break started. He felt better by Christmas but then got a nasty head cold.  His biopsy incision is healing nicely and he can sleep on that ear again. He only has a tiny piece of stitch left. That was kinda gross how they dissolve and then leave an ick behind, but it's all looking good. Just a little red. 
   Pat was laid off from his new job, due to military budget cuts, and with it went our insurance. I'm stressing over that, but I'm still going to do what I have to do for Cameron, whether I can pay for it or not yet.  Pat and I were finally able to sit down and talk and things are much better. Even with the new stress load. We are hoping we can get Cameron on Medicaid.  I don't care about myself, my only concern is Cameron at this point. Kelly is covered through his step moms plan. 
 Also, totally not related except that its about Pat.  I found out that my husband, who will fully admit he isn't a handy man when it comes to household fixing things -(give him a computer and he's a whiz!) - knows a freaky amount of stuff about how to fix toilets.  Our toilet in the boys bathroom has had an issue where water was always running in the tank and down into the toilet. It never over flowed or was anything other than a nuisance. But he fixed it last night and knew right away what was wrong and how to fix it.  When we were at the store looking at the parts they had there I was all like, " do we need this, this has everything we might need, or what about this, and what does this little do hickey do"  but he grabbed a cheap two dollar part and said this is all we need. I was a bit skeptical to say the least, but figured he knew better than I did at this point, may as well go with it.  He is freaky good with computers and toilets.   Did all boys have to sign up for lessons on one household matter. Did they have to become proficient in it before they could leave? And is it a secret club that only boys got to be in. Granted I wouldn't want to take a class on toilets, but hey, someday it may come in handy.  Then again... So would a number for a plumber.  That would be my way of fixing it. Lol 

   Anyway, I'll post what the results are as soon as I get them and have sometime to sit down and write.