Deja Vu

It has been almost six months since my last post.  As the saying goes, no news is good news or in our case no blog is good news. 

There are so many people that genuinely love and care about Braeden, and I wanted to give an update on what happened at his appointments yesterday at Duke and what he is now facing.

About a month ago, he/we started noticing subtle changes concerning his right hand.

(Remember, this whole MESS started with his left hand 17 months ago, and after 3 months he was diagnosed with a Grade II spinal cord tumor called Astrocytoma. He had his surgery November 28, 2018, and Dr Fuchs was not able to remove all of the tumor.  Since the tumor is considered a Grade II ,there has always been a chance of regrowth.  Since, January 2019 he has had a MRI every 3 months to ensure that the Astrocytoma has not changed from his baseline after his surgery.)  

These changes have come on rapidly it seems.  He is struggling with holding his pencil and writing while at school and at home.   He also is having issues with weakness in his right hand, and holding his trumpet.  The actual strength of his right hand has decreased dramatically.  His hand is also showing signs of muscle wasting.  (It is really a deja vu moment.)

I picked Braeden up from school yesterday and off we went......

After the MRI, we headed over to Dr Fuch's office get the results.  The PA did Braeden's first assessment, and went over all the old and new issues.  Fast forward and Dr Fuchs comes in and does his assessment.

The long and short of it goes like this.
   

 MRI is actually unchanged, and he doesn't see any new growth.   The problem and what he is very concerned about is the "clinical and physical changes" he sees with his right hand.  He said the evidence he sees it is likely some growth of the tumor, and it is now affecting his right side. 

Of course, y'all know me and the questions start flowing out of me.

If the MRI is unchanged how do we know its the tumor?  The tumor growth doesn't have to be big to cause an issue, and it is possible that you can't see it on the MRI.

What's the treatment?  Prepare yourselves that there is a great probability that he will need radiation.  (Dr Fuchs called Dr Landi the oncologist who he wants Braeden to see, and they both believe that he is going to need radiation.)

Is there any other possible thing that could be causing the issues?
The only other thoughts he had were the possibility of it being a peripheral (arm) issue, and he needs to get an EMG done. This test will gauge his muscle health and his nerve response.  (Braeden said the last one he had was painful.)    He also wants him to have another brain MRI  He doesn't want to "jump" into radiation without clearing those two tests.  He doesn't think the EMG or the MRI will show anything, but he wants to have the peace of mind that he has ruled out everything before moving forward.

Dr Fuchs wants things to move quickly with getting the testing done ASAP. He understands and shares one of our major concerns is that if Braeden's right hand ends up being as nonfunctional as his left hand currently is, that it would have a  detrimental effect on Braeden's everyday life.  He has so many struggles behind the scenes that most don't see or would even think about with having "one" bad hand. 



THE PLAN 

Lots of appointments have been made over the past 24 hours and we are very thankful for that.


Monday the 10th-Braeden has a brain MRI and an EMG, and an appointment with OT. The OT appointment is mainly to retest his strength in his hands.  He had strength testing done on both hands over the course of 2019.  It will definitely be interesting to see how much his values have gone down.

Wednesday the 12th -Braeden has an appointment with Dr Fuchs and Dr Landi to go over results and decide on the treatment plan.
     

Of course, Braeden in his own way absorbed and took things in as we were all in the room.  It was a quiet car ride home,  We talked a little about what it meant to get radiation.  How many treatments, did it hurt, how long does it take, etc?

He also asked on the way home if I would be his emotional support for-----(when he said this, I thought oh no, he is going to break down and I won't be able to hug him in this crappy 5"oclock traffic, lol ) but then he finished his sentence and said for his AP Human Geography homework.

He always amazes me, the child hears the worse news and all he is worried about is how late we are getting home from Duke, and having to get all of his homework done.  Our night was good after getting settled, and he was his cheerful self.  And yes, I was happy to be his emotional support for AP Human.

We talked again at bedtime, and he is extremely concerned about missing school, missing jazz band, missing drums, missing bowling, etc    He has a busy schedule and I tried to ease his mind.  Right now, we have to take things appointment by appointment and it will all get figured out.....
Prayers are greatly appreciated.

#BraedenBrave
#MrUnlucky