On overload

I am just going to for warn all of you that I am not by any means a writer so if this blog has grammar errors or is written wrong in anyway, I apologize now.  Especially since half of the time I am writing this I am either half way asleep or just beyond exhausted and cannot even comprehend what I am writing.  LOL....

Today was seriously out of control.  I did not sleep last night at all.  I believe I finally went to bed at 2:30 am and fell asleep somewhere around 4 a.m.  Woke up at 6:30 and have been going ever since.  I actually thought that today was going to be an easy day since Carter only had 1 Dr. apt at 3pm.  Yeah, maybe only one Dr. apt but I literally talked to 5 Doctors today!  I am really starting to regret not going to nursing school.  I spend more time looking up things that they have told me or calling them back and saying explain one more time.  Anyway, first up was the Ortho Dr. they needed to tell me that his EMG was on Friday not on Thursday and what to wear and yes it can be painful but he is not allowed to take anything.  Next up Dr. Rios who is a friend of Sean's boss.  She was checking in on Carter since she just received a report from his reg Dr. that he is still not doing well.  She was concerned with his weight loss, fatigue and cough.  She was also concerned about his recent lab work that was done last Thurs.  Bottom line she wants me to keep her informed.  We arrive at oncologist at 3 and leave at 5!  Number one concern for him is weight loss, fatigue, dizziness and not running like he usually does.  He does not feel the lymph node any longer. Yeah! NOPE NO YEAH!  I guess this makes him concerned because when I told him the ER gave him a steroids, he flipped out.  Apparently, steroids like the ones Carter received can actually make a node disappear if it is Cancer.  He said it is usually Lymphoma or Leukemia.  Not to worry though cause it could also be nothing.  Next step is we go in tomorrow for a CT scan of Carter's chest from neck down to belly.  He will be given contrast with the CT and they will doing blood work again to check for different markers and to compare to the CBC done last Thursday.  When we got home Dr. Naylor, his pediatrician called. She said she spoke to all the Doctors and wanted to let me know what the overall opinion is and what tests we might have to do.  She also went over some of the labs that came back from Thursday.  This is what we know.

1. Carters Liver is "mildly high" normal range goes up to 32 his results came back 33 and 40. Not to bad but odd.
2. White count is 7.8 which is normal.
3. Metamyelocytes were 156 when the should be 0!  These are immature white blood cells.
4. CMT does not cause immature white cells and they believe his other symptoms of fatigue, weight loss and dizziness, etc. are not caused by it either.

So where does this leave us?  Carter is a mystery right now she said.  They are concerned and want to find out what could be causing this.  Nothing is shouting Cancer but it also isn't saying its not.  Whats next?  CT with contrast, more blood work and depending on results we may have to remove bone marrow.  I know some of you are asking why not a biopsy of the node.  Well we can't cause they cannot feel it anymore and even if they could, they don't want to because if it is Cancer they run the risk of it spreading.  This is why the next best option is bone marrow.  Hopefully, there will be no "blast" of metamyelocyte and it all just ends up being some weird bacterial or viral infection. 
I know I have asked all of you to pray about the CMT and the darn lymph node before but now just please pray that Carter can get through all this.  He says he is fine but I know its gotta be hard.  Is he strong? Yes. How strong? Not sure.  Does he need prayers and words of wisdom?  YOU BETCHA!  Do I need them HELL YES! I know life is not supposed to be a cake walk but can I have just a slice of it?  I'll let you all know how everything turns out.  We go back to pediatrician on Thursday and will here from oncologist on Fri. 

Until next time..................NO MORE DRAMA!

Michelle

Living With CMT by Nick - Having CMT

Living With CMT by Nick - Having CMT







This is a video of a boy named Nick who lives in New York.  He was diagnosed with CMT when he was 13 and he is now 18.  He has gone through 9 surgeries!  This kid has a big heart just like Carter!  Just thought I would post it so you all can see what it might be like for him over the next year.  Love to all!

Michelle