Tuesday, May 6, 2014

Hoag Hospital Results, Neuro Appointments, and Our Short Term Plan...

We've had a lot going in the Ramsay household...

On Thursday, Jon and I flew to Denver to sing at a conference called Convene, which was a CEO Summit.  Convene is a group for CEO's and business owners and Jon and I were flown out to lead worship for the conference.  This was a milestone event for Jon, as this was the first time Jon had led worship since his surgery 7 months ago.  This was the first time he was going to brave the stage with his guitar.  Jon manually closes his eye with his hand, so the idea of using both of his hands to play guitar and lead worship, was a scary and risky thing.  What if his eye hurt? What if he needed to use his hand to close it?  He bought special glasses similar to the sunglasses he wears, which have a foam lining to protect the eye from wind and debris.  These new glasses have clear glass so he can wear them indoors while still receiving protection from a draft in the room if the A/C is on etc..  He did need to use those glasses, but not while on stage.  While we were on stage, Jon said he felt no eye pain. Praise God!  Jon did a great job leading, sharing, singing and playing.  It was just the 2 of us (no band) so it was a great time for Jon to put his toes in the water again.  :)  I was so proud of him!  He came home so physically exhausted, which our Neurosurgeon said was to be expected since his brain is still recovering from surgery.  (and his brain will be "recovering" for 36 months!  Wow..)  Anyway, it was a great trip and an honor to be a part of such an incredible group/event!

Also on Thursday, after arriving in Denver, we got a phone call from Haog Hospital.  Thursday was the day the Neurosurgeons were gathering for a Board Meeting and were using Jon's file/MRI etc.. as their Case Study.  They reviewed Jon's case, his surgery notes, his latest MRI, etc.. and came up with a course of action they would recommend as a board.  We are so grateful for the time they took to review it and for the time they took to call us and brief us on the meeting.  Unfortunately, their bottom line wasn't what we had hoped to hear.  Basically, they called to say that they recommend that Jon starts Radiation now.  We were hoping they would say Jon didn't need it - at least not yet.  Radiation on the brain is not something we want to enter lightly or without absolute necessity.  We continued to pray for wisdom.

We flew home Saturday night and then on Monday afternoon (yesterday) we met with our Neurosurgeon to discuss everything that had happened since we saw him last, 3 weeks ago.  We hadn't had Radiation like he had recommended.  We had gone to USC for a 2nd opinion.  We had heard from Hoag Hospital for a 3rd opinion.   Our neurosurgeon was very gracious and humble - one of the things we have always loved about him.  He fully understood and supported our decision to get other opinions.  He was quite impressed that we had gotten in to see Dr. Giannatta at USC and agreed that Dr. Giannatta is the most well respected in this field.   Our doctor listened to our concerns and our ideas.  By the end of the appointment we had agreed on a plan that we all felt comfortable with, based on all of the data we have received: We will wait and observe.  For 7 more weeks, we will wait.  By the end of next month, it will have been 3 months since Jon's last MRI.  Jon would typically wait 6 months between MRIs, but because of how fast Jon's tumor appears to be growing, 3 months is as long as everyone is comfortable waiting.  By waiting, we get to double check his tumor growth after another 3 months.   If Radiation is at stake, we want to really see if it continues to grow at the fast rate it appears to have grown the past 6 months.  Just to be sure.  Since the tumor isn't at the size where it's pushing on Jon's brain again yet, we can safely wait these extra few weeks without serious risk.  (it can grow about 1.5 more centimeters before we're in hot waters with it causing big problems)  These extra weeks will also 'buy' us more time to research Radiation options.  Jon and I feel really good about this decision to be patient and conservative in our approach.

Our Neurosurgeon also gave Jon a prescription for numbing eye drops.  Jon's eye pain has been the biggest source of his discomfort since surgery, so we are open to anything.  The Dr is not certain this will help or work at all, but said it can't hurt to try.  We drove straight from the Dr to the Pharmacy.  :)

So that's the latest from the Ramsays.
7 more weeks of waiting.
In the meantime, we will go back in a few weeks to Dr. Levine in LA for another eye appointment and to have Jon's contact changed, etc..  We are trying as best we can to wait on doing any eye surgeries, but time will tell if that will be possible.  Jon's eye pain will determine that timeline.

Thank you for your continued prayers.  Prayers for wisdom, discernment, healing, patience... we need it all.  Bless you for being here with us.  Still.

1 comment:

  1. Waiting is so hard. Yes, prayers will continually go up for you dear ones. Much love to you.