Thursday, January 17, 2013

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. 


Monday, January 7, 2013

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." 
    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. 


Sunday, January 6, 2013

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. 

Wednesday, December 12, 2012

So Frustrating.... and also Biopsy's

                   Last Wednesday we had the appt. with the new specialist.   He was super nice.  But when I walked in I thought I had some answers, when I walked out, I had none!  He was very professional and very kind, but he just wouldn't say one way or the other about what it might be.  He wouldn't tell me it still wasn't cancer, he wouldn't say it was Osteoblastoma either.   He just wouldn't say one way or the other.  He was concerned about the rate of growth, and with Cameron's hearing.  So he sent us next door, which was in the same building, just across the hall to do a hearing test.   That was the highlight of Cameron's whole day.   They said that his nerve is still great and he can hear really well from that, its the canal that has the obstruction.  Which we knew already.   His ear canal is being pushed down and blocking his ear drum and 2 of the 3 bones in his ear are eroded.  His hearing was very bad on that side.
       Then the doctor said that he wanted a biopsy done and went to schedule it.  He came back and said that it was scheduled for the next day.  The hospital called and said he couldn't eat or drink after 9pm.  So we had to scramble to get him ready for a small surgery.  The only thing he complained about was that he was hungry and thirsty. And the most of that happened when he was given the medicine to relax.   We were told to be there at 115, and the surgery would be at about 3-330.  They didn't come to take him back until after 4.  Then he was in surgery for an hour and then recovery for awhile.  They called me to come back to the recovery room before he fully woke up.  That made me feel better.   I don't know about Cameron, but it sure did me.    It took awhile for him to wake up and drink before he could come home.  He came home and rested for a few days and is good as new... sorta.  He has a scar behind his ear, which according to the doctor is healing nicely.  He has to keep the area mostly dry until the stitches are gone.   They will dissolve. Then he wanted us back today so that he could check how he was healing and if there were answers back discuss them.  (I wrote the top half after I wrote the second half when I realized I hadn't talked about the biopsy yet.)
   We are back from doctors office.   Still no answers!!!  I am getting so frustrated. I am so happy that they are being so thorough, but we've been going to all these different doctors and are being told one thing and then another.   
    I really do like Dr. Sharma.  He has been so nice and he seems like he really does care.   But I found out today that he might not be the one to do the surgery?!?   He was the specialist the specialist sent us to.  If he's not doing it, who's going to do it???  

   So, our news from today:   Dr Sharma said that they talked about Cameron's case in their little counsel thing and they are all in agreement that they don't think it's the normal type cancers.   They feel its not malignant at this time.  Yet none of them know what it is.  Or have any idea.   He said that there is a pathologist here who is one of the top in the country who is the next one to read Cameron's biopsy. He said he might not be the last one to see or try to read them, but he is the next one.   Then when they find out for sure what it is (and that might take longer than he first thought), he'll call me to discuss the results and then we'll schedule ANOTHER CT scan, but this one will be a specialized scan of his right temporal bone something or other.  He said that Mountain Medical Imagining can do the scan again so Cameron can see his friend Kirk there.  And I'm so glad it's a CT scan and not an MRI.   The CT doesn't take as long and he shouldn't have to have contrast.  He said they want an exact image of what's going on and what's being affected.
   He said that when they figure out what it is then they will figure out what they are going to do and how to take it out.  He said that he might not be the one who does the surgery.... So we will be seeing Doctor # 6!!!!   I really am getting tired of going to all these specialist who keep sending me to specialist!! How many more specialties do they need? Dr Sharma should have been the last one.  He's the major head and neck surgeon... who else does he need to see?? How much higher up are we going to have to go? Is that the way it even works? Maybe we are just going sideways.   Though it feels like we are going forward and then back again sometimes... 

    The surgery definitely won't be before Christmas so he can have a good Christmas and not be in pain.  It's just me that has to worry... and I don't have to worry, but I will be worrying.  It's my right to do so. lol
   He did so well on his biopsy. He didn't complain about pain much but has had several night terrors since then.   He didn't sleep well at all once the bandages came off. So he stayed home from school Monday and Tuesday. (the bandages came off Sunday night).   

   He really is a trooper.  He has handled all this with an amazing attitude.  He has been just as happy and pleasant as he ever is.   I don't know how he does it, but I want to be like him when I grow up.  Even when he wasn't feeling the best he was still trying to be happy.  I will be taking lessons from him for sure.    He woke up from the anesthesia so peaceful and calm, and they said that most kids wake up fighting or mad.  I even had a few friends caution me that that might happen.  I got lucky this time I guess. Pat even made it to the hospital just after they wheeled Cameron into recovery.  So when he woke up his dad was there.  He really liked that. 
   So that's what has been going on... and I still have no answers.   And I'm getting so tired of going from one doctor to have them send me to another doctor.  

Saturday, December 1, 2012

It's almost here...

    Well, it's almost Wednesday.  The DAY of the appt. we've been waiting to go to.  I really was ok with everything.  I was dealing well, I wasn't stressing too bad.  My sweet cousin Rachele dropped off some essential oils the other day and suggested that I go get a journal.  So I did.  And I have been using the oils ~ though diluted.  They are too strong for me on their own.  And between all the people who have been asking about us and being super sweet, I really have been ok.   Then last night I had a horrible dream.  The dream itself wasn't too bad, it was the way it left me feeling inside after it was done.  It was about Cameron's surgery, and while we were preparing him for it they came to get blood and it took a bunch of us to hold him down and he was scared and screaming and through all this, my dad who was supposed to be there, wasn't anywhere to be found. So I was in a panic over Cameron, but also worried about my dad.  So I woke up feeling crappy.   Then some other things happened at home that just made the day go from bad to worse.  

    Pat has to work tonight, so I decided that since it's just me and Cameron home we'll order a pizza and then go look at Christmas lights.   I am trying to be positive but it's hard. The weather isn't helping. (those that know me know that overcast conditions are not my friend.)  
   I've had so many wonderful people offer to listen and be here if I need them and I had been talking to my sweet mother in law about a lot of it, but I feel like all I ever do is vent and complain (sometimes about Pat, and I feel bad talking to her about that. I don't want her to ever feel like she has to choose a side. Cause I'm honestly not asking her too) So today I decided to stop venting to her. So I have a position available if anyone wants it. LOL  I know that she'd tell me I was being silly and to not worry about it, but I do. And that is one thing I can stop doing and stop worrying about.  

The other day some one (I think I've narrowed it down to 2 possibles) left some cookies, a jug of punch and a can of calming purple stuff on our porch.   Pat and I were home and had just finished eating when the doorbell rang.  He looked at me and asked if I was expecting anyone, to which I replied that I was not.  So he went to answer it and then I hear "O....kayyyyy...."   and he bends down to grab it off the porch.  It was very sweet of them. So if you are reading this, THANK YOU!!! 

   I'm worried about some thing else now...   And I know that I am all over the place with my topics but I'm trying to get these out as fast as they are coming and they are not always coming in order.  So please bare with me.   Anyway, I know that health scares can bring families closer together and it can tear some of them apart.... While I won't say that it's tearing us apart, it's definitely not bringing us closer together either. So I'm afraid that eventually it would tear us apart.   And by no means does Cameron have a life threatening condition.  Its life altering for sure, but not so much life threatening.  But Pat and I don't ever, and I mean EVER talk about it, we seem to be fighting more, some of which I know I start.  But I am not, and I know that this will come as a shock to many of you, but I am NOT super woman.  I can't do it all.  And I can't do it all alone.  I feel so bad for my friends who do have to do it all alone cause I have no idea how they do it.  I need help here at home, and yet now seems to be the time when everyone else wants a piece from Pat.   So he's going off to help everyone else and I'm home dealing with Cameron.  In fact, and I'm not proud of this, he left for work today and I barely spoke to him.  I have told him I need him home more and he asks why, and because I don't have specific answers for him, I feel like he blows me off.  I honestly feel like I am his last priority lately.  (I probably shouldn't be saying all this so publicly, I HONESTLY do love my husband and I know that he loves me) I just need for him to show me differently than he is now.  I got in the shower today and cried because of all the tension.   I hate it.  I really was doing so well earlier this week.  I was at peace and had given all my worries over to the Lord, having FAITH that He would see me through this.  I still know that He will.... but how will Pat and I still be on the other side of this??  Will we be back to normal?? Will we be better than we were?  Or will we be struggling to hang on to each other and our marriage.  I don't want the last option.   I want us happy and healthy like we were.   
    Now, how to do that??? I feel resentful towards the people taking him away from me,  and some of them are family and so now I feel horrible for feeling that way towards them.  But I don't know how to change that either unless I just stop expecting Pat home and pull up my big girl panties and do it all alone anyway.  Maybe that's what I'll have to start doing. 

Anyway, just my thoughts.... I hoped that like last time, sharing my thoughts would help me to feel better.   And please, if you comment please don't bash Pat.  He is trying in his own way to deal with this and unfortunately for me, I don't understand his way.  Just like he doesn't understand mine.  I do love Pat and am grateful that he works so hard and provides us with everything so that I don't have to work.   He is a great husband, we are just on different planets right now and trying to find each other.   


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!!!


Monday, March 28, 2011

My boys

     Pat had to go pick up his new uniforms yesterday so I decided we would all tag along, in the hopes that we could stop at a park and the boys could get out and run, because it's been so cold here lately, it's been hard for them to really go outside. And since it was a fairly calm day we decided to try again. (We tried on Saturday as well, and right after we got to the park the wind kicked up and it was a freezing wind so we had to leave) 
     So we stopped to get something to eat, and then stopped a nature preserve.  It was still over cast, kinda cold, and EXTREMELY wet!!! The ground was flooded. So the boys had a great time jumping in the puddles, until Kelly fell and then I put a stop to the jumping.  ( I know I'm such a mean mom, lol)
    I took the opportunity to take a few shots of the boys.  Here a few of my favorites.

 I absolutely LOVE this picture of my boys!!! 
 I had the funnest time taking pictures of Cameron... He was so serious until I asked him to smile and then he'd bust up laughing. It was the cutest thing ever!

 And I had to threaten to take away his phone forever to get him to smile.  Kelly just doesn't like to smile but I got a few.

This was after I told him that I'd throw the phone in the creek right behind him. Or it could have been after Pat came up and did the whole "bunny ears" behind my head. Who knows... lol (I didn't really tell him I'd throw it in the creek, but the bunny ears are very true) lol

I swear I get this look ALL the time!!! It's his 'I'm only humoring you but I think you're a huge dork' look.  lol  I still love all my boys!!!