So 2 weeks of calls and waiting and more calls and emails. Been processing it all and Judes urgency to get us there so quickly had me really emotional.

I have re-wrote this post 3 times and wasn't ready to hit send to you all. I'm glad I followed my heart and waited to update. So....

I also spoke with our radiologist from Jacksonville that wasn't overly concerned and really thought waiting to scan would help give us a better idea here. Its not that he's siding with either of our teams really, just a complicated case and its the first that has these oddities. He said it could just be damage - no one can say for sure what this change is yet. 

Then oddly around 6:30pm last night Nicky's primary from Jude called - what a different tone this call was. I think seeing all the other teams not feeling any urgency and gave them another week to all discuss his case.  She said, we all really are 99% sure this is not a tumor, but we have to know there's always a 1% chance they could be wrong. She said we don't need to compare scans so soon, it doesn't make sense to when he's doing great. Then our second primary, he was initially Nicky's first doctor called me from Jude and said waiting till August is reasonable. We are in agreement that this is a radial change. -----whhhheewwwwww! 

If I had posted the last two updates in between calls, what a different picture this all was - we were scheduled to be at Jude June 30 and scanning July 1.  It's amazing how much my doctors also trust me, 3 of them said what does your gut tell you - honestly my gut says he is fine. So now we just pray for this change to go away! If not improve! What a roller coaster the last 2 weeks of calls have been! 

What we know is Nicky's not relapsed - he does not have cancer - that the swelling in the spine and brain have improved. So NED with a radial change they are watching - we will Take that! 

So the Mommy side of this, I am hoping and praying my heart out everyday that the radial changes are going away, have improved and nothing is going to be needed. In my eyes my son is doing so well and is a picture of health. Its hard to understand when you have a child with no symptoms for anything why this change is even there.  Boston reviewed everything again on Thursday and again said they do not believe this is anything to worry about, but as his Momma - I am doing my best to give it to God and not worry! We just need good reports so we can come home and breath and enjoy our family.

mybear13

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