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My heart hurts

Posted by on Nov. 6, 2013 at 1:12 PM
  • 69 Replies

As many of you know, my 23-year old son has been battling a brain tumor since he was 19.  He had brain surgery when he was 21 and will be on anti-seizure meds for a very very very long time.  He has new MRIs done about once every 4 months. 

Well, his latest MRI done a couple weeks ago showed some possible growth.  His neurologist presented his case to their Brain Tumor Conference.  Johnny had a visit with a neurosurgeon to talk about the findings and options, just 2 days go, on Monday.

The BTC was aggressive in their recommendation of surgery. 

The neurosurgeon has pretty much left this entire decision up to Johnny.  This is why my heart hurts.   His options are

(1) Do surgery now. 

(2) Start chemotherapy now. 

(3) Wait 4 months and get another MRI in February and then make another decision based upon those results.

He emailed me the recording of his doctor's visit and then I called him (per his request).  What a horrible thing to have to try and decide.   He wanted to see what I thought, since this neurosurgeon has basically told him he could choose any one of these options.  Johnny asked pertinent questions regarding recovery but there is absolutely no way to know if he would encounter the same issues he did last time (mainly right-sided weakness that gradually improved with physical therapy over 5 weeks after surgery, and the Expressive Aphasia that lasted about the same length of time).  We talked about all three of these options and he decided to just wait until February and get a new MRI and THEN make another decision then as to what to do next.  He knows that I would come to be with him in a heartbeat if/when he chooses to have surgery.  Thank GOODNESS my work is 100% portable! 

I just needed to get this off my chest.  I am so thankful to have all my "friends" here at MWAK that I can talk to! 

:o)


I gave him this T-shirt last Christmas.  It says "Trust Me.  I'm an Engineer." 

by on Nov. 6, 2013 at 1:12 PM
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Replies (1-10):
mac1940
by Mary Ann on Nov. 6, 2013 at 1:37 PM

Saying prayers for Johnny.  Evidently the neurosurgeon is confident the tumor is not aggressive enough to warrant immediate surgery, so hopefully the waiting for three months will be okay.  Tough decision for sure.  He is so lucky to have you to stand with him.  And you have to know that all of us here are here for you.

Bleacheddecay
by Gold Member on Nov. 6, 2013 at 1:41 PM

*HUGS and HUGS*

alwaysbelieve
by on Nov. 6, 2013 at 1:47 PM

Hugs and prayers. I fortunately or unfortunately had to make all the decisions regarding my Adam's medical care. He was not able to speak but I often think about what he would have chosen. 
Blessings to Johnny for making a difficult decision and involving you in that process. Blessings to you for being there through the storm and holding an umbrella for Johnny to feel safe enough to make that decision. 

Why123
by Nancy on Nov. 6, 2013 at 2:04 PM
1 mom liked this

I will be praying that everything turns out well for Johnny.  And I will also be praying for you because that is a heavy load to carry especially when there is nothing you can do immediately to help.

terri-553
by Silver Member on Nov. 6, 2013 at 2:14 PM
My hope/prayers for both of you,Take care
Sheri0427
by Member on Nov. 6, 2013 at 2:26 PM

Praying for you both.  He looks like a wonderful young man and so very brave! God loves you!

EireLass
by Gold Member on Nov. 6, 2013 at 2:43 PM
Oh no.....how heartbreaking. How sad for both of you to be so far away from each other. I'll be thinking of bothdof you. I think you're a pretty calm person. From various posts you've made, i think that about him too.
Keep us posted.

What a handsome kid!
suzeebloch
by Ronna on Nov. 6, 2013 at 2:48 PM


Quoting mac1940:

Saying prayers for Johnny.  Evidently the neurosurgeon is confident the tumor is not aggressive enough to warrant immediate surgery, so hopefully the waiting for three months will be okay.  Tough decision for sure.  He is so lucky to have you to stand with him.  And you have to know that all of us here are here for you.

thank you for pointing out about the surgery ... neither Johnny nor I thought of that!  the neurosurgeon did say that if Johnny chose surgery now, it would be a relatively "easy" surgery ... and they'd have him awake because the tumor is so very close to the motor area of his brain.  but he also said it was "reasonable" to wait until February and get another MRI.

suzeebloch
by Ronna on Nov. 6, 2013 at 2:48 PM
1 mom liked this

thank you! 

Quoting Bleacheddecay:

*HUGS and HUGS*


suzeebloch
by Ronna on Nov. 6, 2013 at 2:49 PM


Quoting alwaysbelieve:

Hugs and prayers. I fortunately or unfortunately had to make all the decisions regarding my Adam's medical care. He was not able to speak but I often think about what he would have chosen. 
Blessings to Johnny for making a difficult decision and involving you in that process. Blessings to you for being there through the storm and holding an umbrella for Johnny to feel safe enough to make that decision. 

It's tough being the mom sometimes.  Johnny lives in California and I live in Kansas.  He moved out there in 2008 3 weeks shy of 18 years old, because he knew where he wanted to go to college.  He and I are very close and do tend to think very similarly about many things!

thanks for the hugs and prayers.  I am so sorry about Adam.  :o(

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