The past 60 hours have been busy. Those hours were filled with doctor appointments, more testing, a lot of yummy food, some heavy traffic, and a little sight seeing.
I will try to condense everything and keep this post shorter rather than longer.
A lot of those 60 hours, were spent questioning the doctors, and asking what more we could do? Where else could we go, if you can't solve the mystery of Braeden?
I had written about Braeden "stumping" the Duke doctors a few blogs back. WELLLLL, it seems he is stumping the doctors of CHOP as well. Is this what we wanted to hear? No, it's not. Is there a plan? Yeah, kinda.
I will start with the appointments we had yesterday.
Dr. Brandsema the Neurologist
His best guesses were as follows:
The testing shows that Braeden's problem is mostly motor and not sensory. (This is RARE. Typically, it is a mix of motor and sensory) Of course, this kid is going to keep these doctors guessing.
Braeden's issues are nerve root related. This could be caused by a autoimmune process. Most of the the things that cause nerve root issues are not treatable.
His suggestion is to try a "Hail Mary" and begin IVIG infusions for six months. He said it was a long shot, but if there is a response to the drug then great. (IVIG is a blood product used to "wash away the bad antibodies" in the blood that are attacking the "good". )
He also questioned, why a sudden auto-immune disorder if he has already had a brain tumor and the spinal cancer? (Kind sir, that's why we are here.)
He thinks that his symptoms are tied in to his tumor, or possibly something called Chronic inflammatory demyelinating polyneuropathy (CIPD). He said it was a long shot, but CIPD can be motor related. (His EMG does not support this diagnosis.)
So our plan after leaving his office yesterday was:
Plan a lumbar puncture at Duke. (I texted Dr. Landi this morning and he is going to take care of this getting this ordered for next week)
The results will rule in or rule out the CIPD, and or a Lymphoma or Leukemia process. Both Lymphoma and Leukemia can cause multiple nerve root issues, and his roots are are all being affected.
If his cerebrospinal fluid shows an abnormal cell pattern then it is likely CIPD. If the cerobrospinal fluid show abnormal cells it may be a Lymphoma or Leukemia process.
Are you dizzy yet? Because, I am.
Our next appointment was with Dr. Chen yesterday. She is one of the Neurosurgeons at CHOP. I will just let a picture of my notes below sum up our appointment.
Today, we met with Dr Phillips who is the neuro-oncologist. He literally spent hours with us today. He has no clear answers. He only has BEST GUESSES as to what is going on. His best guess is that it is a paraneoplastic neurologic syndrome. HIS BEST GUESS, does that suck? Yes it does, and I
couldn't help to ask, what next?
If you don't know, WHO WILL? Dr. Phillips looked at me and said he would not leave us behind. Once, we get the lumbar puncture next week at Duke, and if we find out we have one of the paraneoplastic neurologic syndromes, he will help us navigate and find the expert we need to deal with "his PNS".
If it is not a PNS issue, we will begin the IVIG infusions, and hope for the best, that his symptoms will get better, and we can stop the steroids. I certainly hope it is this simple of a fix. But as Dr. Philips stated today, "Braeden's case is CONFOUNDING and doesn't make sense."
Our appointment is summed up below, Braeden read it and said it's my VENN diagram, lol.
This road is not over for my boy.
I appreciate all the love and prayers. He deserves them.
#BraedenBrave
#MrUnlucky
Still praying Braeden! 🙏🏻💙🙏🏻 You keep positive my friend!
ReplyDeleteStill praying and begging God for a positive change. I need to get on my knees. 💜
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