Fickle and bizarre

If I could sum up Braeden's tumor and medical stuff in one word, I would chose fickle.  This thing is always full of surprises and seems to be ever changing.

I don't know if I can keep this short, but I am going to go day by day since Friday to update you all.

Friday (June 26th) 11:00 am

That morning from CHOP, I got a very encouraging email from Amy.  The team at CHOP are reviewing his case and are trying to coordinate all of the appropriate providers so they can begin to schedule consultations accordingly.  They also want to be sure that once we are there we have a productive visit, and  that we meet with as many provider's as possible during our time there.

This is awesome news!  I am elated that CHOP is willing to see him, and hopefully give us some answers.  

Friday (June 26th) 4:30 pm

Dr Landi, called me with the results of the Flexion MRI.  I believe if he could chose a word for Braeden's issues he would say "bizarre".  He used this word at least 5 times during our conversation.
The long and short of it is....

The flexion MRI shows moderate to severe stenosis at C5, C6, & C7.  Its bizarre because it's located where his laminectomy was done and he is missing the lamina.  The MRI definitely shows impediment on the spine.  It is also bizarre, because apparently you never get stenosis with a spinal cord tumor.   Stenosis is also more common in the lower back not the cervical area. Dr. Landi's best guess that this is likely due to an anatomical defect?  Again, bizarre... He said that the MRI was pissed when Braeden flexed during the images.  As of Friday, the plan was for Dr Fuchs to speak with a spine neurologist and give me a call on Monday.  Dr. Landi and Dr Fuchs had already spoken before he called me.  They both think that a spinal fusion surgery will be suggested.

UGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

I asked for the new MRI results to be emailed to CHOP.   

Saturday & Sunday (June 27th & 28th) 

I didn't give Braeden an update over the weekend about his results.  I didn't want him to have it on his mind, and I wanted to speak with Dr. Fuchs office on Monday and get their thoughts.

Monday (June 29th)
Dr. Fuchs office called, they described his MRI as showing instability.  They want to see us first thing in the morning at 8:00.   (That's going to hurt a teenager I know :)   He didn't get up today till 1pm, lol.)

They have scheduled Braeden for a flexion and extension X-ray at 8:00 am.  Dr Fuchs hopes this will show which is doing the more pinching, the bone or the nerves?  We are also suppose to meet with an adult spine neurosurgeon tomorrow. 

I talked with Braeden today about all of the above.  I think the most important question he wants an answer to, is the same one that most of want to know.  "Mom, if I have that surgery, will my hands get back to normal?"   I sure hope so, my sweet boy. 

#BraedenBrave
#MrUnlucky