CGK Update

First of all, I would just like to say thank you to everyone that has sent us an email or note of Facebook saying they are thinking about us and praying for us.  It means so much to us and we are greatly appreciative.  Some of you I haven't seen in 10 (!) years since high school, and it just means the world to me.  So THANK YOU!!!

Now, about the appointment...

It was a very long day.  Very long.  We got to the hospital around 8am and left about 4pm.  We checked in at radiology and Caroline had an hour to drink her contrast.  Of course she chose lemonade :)  And she was so excited about it!  She even told the nurse she was "so excited for my special lemonade drink!"  Crazy child.  And you know what?  She drank it in about 10 minutes.  No complaining at all.  Go figure.  We waited the remainder of the hour and were called back into our room.  The anesthesiologist came back to prep us for the CT and he then informed us that since Caroline has an egg allergy, they could not use the sedation medication that they were planning on using because it has some type of egg base in it.  That was the last thing we needed!  So he said that she would need to go under general anesthesia for the CT.  Like the whole breathing tube and all.  Oh my.  I did not want that, especially for a CT scan!  So I begged to see if we could try it without anything.  He warned that this is a difficult age group putting an IV in and sitting still (no kidding!), and that if it didn't work then she would be exposed to the radiation twice.  For some reason I just knew that she could do it!  We went back and got the IV...of course she cried.  I mean, I cry when I get an IV.  Then I left the room and they did the scan.  She did great!!!  She was still, quiet and they got what they needed.  I was so thankful!  You know, just one less thing to worry about...

We were getting ready to leave the room and go grab some lunch when two women walked in and said they were from the Children's Hospital Foundation and was I Caroline's mom.  Um, yes.  Great, I thought.  We have been here for a CT scan and they are already hitting us up for money.  Isn't that horrible to think of ?!?  Anyways...she said that RJ's boss, Mike, had called them (RJ and Mike have both worked with the Foundation via ML) and told them to come by and say hi and that he was thinking about us, and gave us a gift card to have lunch.  I had huge tears in my eyes at that point.  It was emotional day already, and it just meant so much to me that he was thinking of us.  So we went and got lunch and Caroline devoured a chocolate pudding first thing.

RJ and Lilly Catherine met us for some lunch and then we went for the oncology appointment at 1:30pm.  It was a little crazy controlling Lilly Catherine and Caroline was beyond exhausted at this point, but we really wanted for all of us to be there together.  We reviewed Caroline's symptoms with the doctor and our small, but stressful, journey the last month thinking she had a sun allergy and now possibly a tumor.  The doctor went to the review the scan and she said that everything was normal!!!  We were of course relieved at this point, as my greatest fear was that she had a cancerous tumor that maybe had spread since she has had symptoms for the last almost 2 years.  This is not the case!  Praise God!!!  However...I don't like the word however...the oncologist said that it was kind of a mixed bag.  On one hand, it is obviously wonderful news that our worst fears are not true.  On the second hand, we still don't know what it is.  And she said that she is "puzzled" with Caroline's case because she has such "classic" symptoms of pheochromocytoma or neuroblastoma.  The flushing, sporadic high blood pressue, high heart rate/pulse...She said that she wanted to discuss it with some of her colleagues to see what our next steps should be.  There is another scan that they may want to run, which takes about 45 minutes, but she wanted to think about some other options and get back to us early next week.  From all of our doctor's appointments, it is my understanding that sometimes these tumors can be in other places (they are typically in the abdomen/pelvis, which is what her CT was).  So I don't know if they want to do the other scan for that or what. 

We are so relieved to have had this first round of testing done and have everything come back normal!  As the pediatrician says, we still have homework to do to see what is causing Caroline's symptoms (especially the flushing and high blood pressure), but we are encouraged!