Tuesday, July 8, 2014

The Big MRI Results.....

First, let me thank you for your 'grace' on my last post.  I typically have time to re-read posts before I hit "publish."  I usually have time to process and think etc... Today, I had a short window of time coupled with a myriad of emotions.  Probably not the best combo.  ;)  But you were kind and gracious and let me express my "half baked" thoughts.  Thank you.  :)

Well, to quote my Facebook status update: "Today the miraculous DID happen!  Jon's tumor did NOT grow!!! NO radiation! (for now at least)  Next MRI is in 6 months!!!"

I honestly still can't believe it.  I'm still trying to exhale.  Here's how it went down:

Our neurosurgeon called us out of the regular "doctor/examination room" and walked us into his personal office.  He sat down at his desk and we sat down across from him.  He angled his computer screen so that we could see it and proceeded to tell us he had very good news for us.  He showed us Jon's 9 month (post op) MRI and compared it to Jon's 6 month (post op) MRI.  He said the tumor size is virtually the same as it was 3 months ago.  The tumor had not grown at all.  He said this was VERY good news.

Let me say it again and try to explain how cool this is:
*The MRI that was done right after Jon's surgery revealed a tiny sliver of tumor that our Neuro had left in surgery (attached to his facial nerve).
*Jon's 6 month post-op MRI revealed the tumor had grown and was growing at a fast rate.  (Typical rate of growth is 1mm per year.  Jon's tumor had grown 6mm in 5 months!)
*Today's 9 month MRI looked exactly the same as it did at 6 months.  Which is very odd, since it was supposedly growing at such an alarming rate.

The Doctor was baffled by this whole situation.  He said, "The only possible explanation for this, would be that the MRI that was done right after Jon's surgery was inaccurate.  It must not have captured the whole thing.  It must have been this size since Day 1, because tumor's don't just grow at alarming rates and then stop growing out of no where at 6 months."  I responded, "Yes, that could be.  OR the fact that we've been praying and have a ton of people praying."  He looked at us and said, "Well, there's that too.  Who knows.  We'll never know!"

*Since the tumor is not growing any more, and it is on the edge of Jon's brain and not pushing onto his brain or growing into his brain, the doctor said NO RADIATION is necessary at this point!

The reality is, there are 2 options:
1) If the tumor was this size all along, then Jon would have undergone Radiation on his brain unnecessarily!  God prompted us to ask for that "pause button." We got a 2nd and 3rd opinion and were patient to take the 3 months to double check the tumor's growth.  God's hand was so clearly guiding us and with us!
2) If the tumor was indeed smaller right after surgery and then grew extensively in the first 6 months... and then just stopped growing?  That is nothing short of a miracle!!!  God's hand was so clearly on Jon!

The way I see it, it doesn't matter what in the world happened.  We may never know.  And I couldn't care less.  God is good!  He is faithful!  He has been so present - guiding each step of this journey.  We feel SO grateful for the prayers of so many going up on our behalf.  THANK YOU!

So what is next???
Jon's next MRI is in 6 months.  If Jon's tumor doesn't grow and that MRI reveals everything has remained the same/stable for 6 months, he'll then switch to having MRI's only once a year!  Yes, it's once a year for the rest of his life, but we'll take it!  They will monitor the tumor every year to watch for any growth.  If it ever grows, then we'll begin the radiation/surgery conversation again.  Until then, I'm washing my hands of that topic!  :)

The Neuro said now we get to just focus our attention completely on Jon's recovery and his post-op illnesses/issues.  Possible eye surgery coming up... keep working on his balance... keep expanding his stamina... keep working on his management of details.... talk about possible specialized surgeries on different nerves to help bring movement to his face... etc... etc... etc...  Yes, there is still a lot to deal with.  But a growing tumor aint one of them!!!!  :)

Thank you for praying.  Thank you for supporting and encouraging.  Thank you for believing with us.  We are so humbled by your love.  We are so grateful for you.

Please continue to pray with us - specifically for the biggest issue at hand - Jon's eye pain.  We are currently looking at eye surgery options with our health insurance etc...  Please pray with us that God would open doors for that to be done.  It's not guaranteed that would eliminate his eye pain, but there is a big chance it could!  And please continue to pray for Jon's facial nerve to restore.  We believe God is able!

Thank you again.
And again.
And again.

Going to bed with a grateful heart,


Today at 3:15pm, Jon and I will meet with his neurosurgeon to get the results from his MRI.  This MRI will reveal if Jon's tumor really is growing as fast as they found it to be growing at his 6 month, post-op MRI.  At 3:15pm we will find out if Jon needs to have radiation on his brain or even a possible 2nd brain surgery.

Our kids are attending a water sports camp down in San Diego this week, so I just drove up to meet Jon at his appointment.  I didn't hit any traffic, so here I am, 90 minutes early.  I glanced over at my passenger seat and there sat my laptop.  God's gift to me in this moment.  A chance to write.  To process.  To gather this jumbled mess of emotion inside of me and try to put it into words.  God bless Starbucks and their free wi-fi.  :)

I have never believed more in the faithfulness of God.  God has been SO faithful to us in this season. I don't doubt His goodness.  He is so good.  He can be trusted.  His people have surrounded us.  He has provided for us.  Sustained us.  So what do I feel right now?

I am dreading this appointment.

I remember driving Jon to the Emergency Room 9 months and 7 days ago.  Jon and I were both certain they were going to send him home with a dose of Extra-Stregnth Something for his headache and we'd call it a night.  Instead, they said he had a brain tumor and admitted him to ICU.

I remember driving Jon to his 6 month, Post-Operation neurosurgery appointment.  Jon and I were both certain that they were going to send him home with a clean bill of health.  I mean, he had the surgery. They removed 98% of the tumor and cauterized the tiny sliver left, it so it wouldn't grow any more.  It was successful.  He now has SSD (Single Sided Deafness) and facial paralysis to prove it.  He's paid his dues.  Instead, they said the tumor was growing back at an alarmingly fast rate.  They scheduled him to start Radiation a week later.

After canceling his Radiation to buy us some time to make an educated decision, Jon and I got 2nd and 3rd opinions.  We drove to USC to be seen by "the best." Then he was a Case Study at Hoag Hospital in Newport Beach.  Each time, we were hoping someone would say, "You're good!  Your journey is coming to an end!"  Instead, each time we were told action would need to be taken.  Different doctors had their differing opinions on the timeline, but all agreed that action is needed.

We got our neurosurgeon to agree to a 3 month "Pause Button."  Basically, let us wait 3 months and then do another MRI.  If this MRI reveals the tumor really is growing as fast as you say it is, we will move forward with more treatment.  There is no harm in double checking.  Today, those 3 months are up.

We're now 60 minutes away from our next "big" appointment.  And I am dreading it.  This isn't my first rodeo.  I've driven into this driveway.  I've been hopeful.  I've expected the best.  And I've walked out feeling like I got socked in the gut.

I realize these feelings are raw.  Not polished.  I probably shouldn't even hit the "publish" button when I'm done writing this.  Not sure if I will.

It has nothing to do with the faithfulness of God.  It has nothing to do with His goodness or His provision or His grace.  It has everything to do with my flesh.  My flesh is so weak.  It's tired.  I know that I know that I know that whatever 3:15pm holds from the doctor will also be accompanied by whatever it is we need from God.  God has NEVER left us lacking anything.  He has provided what we need - and abundantly more - for each leg of this journey.  So my dread is not that I worry about our needs being met.  It's just the dread of knowing that we live in an imperfect, fallen, broken, sin-filled, disease-ridden world.  And it's painful and hard and exhausting and scary and unsure.

I don't have answers. Yet.  I don't see or know what God sees and knows.  But I will tell you that I've prayed.  A lot.  I've asked God for good things.  I've told him my fears and expressed my dread.  And what is amazing and beautiful?  He is near to me.  So present.  I can feel Him.

I'm going to hit "publish" on this blog.  I realize I may offend some people, because I'm sure there are people who can't rectify the "rub" of believing God to be faithful and at the same time dreading something.  But I'm going to hit "publish" anyway - because I realize there are many people who are afraid to tell God that they are mad or scared or feel dread.  Sometimes we think our prayers need to be all sunshine and rainbows.  We think we should be grateful for our blessings and that's it.  Well let me give you permission to be real with God.  God can handle it.  Tell Him exactly how you feel.  Tell Him what your worries are.  Tell Him your struggles.  I am telling God today, I believe you.  I have faith in you.  I know You to be faithful.  But I am dreading this appointment.  I resonate with Mark 9:24:  "I do believe!  But help me with my unbelief!"

Would you pray with Jon and me?  That God would bring healing.  And that God would give us peace.  And that if we need to make decisions, that He would give us wisdom.

We are SO grateful for the gift of His presence through all of this.  And we are SO grateful for the prayer support from all of you - who live literally all around the world.  God hears us.  He cares for us.  He knows our story.  He is able.  He is faithful.  He is good and generous and extravagant in His love and grace applied to our lives.  We are so grateful.

I want to encourage you to invite God into your journey.  Invite Him into those painful places.  He alone can heal.  He alone can bring true peace. He alone can bring comfort.  Be real.  Even with God. He can handle it.  Don't think that's what prayers and talking to God should look like?  The Bible says otherwise:

Psalm 55:22 - Cast your cares on the Lord and He will sustain you.
1 Peter 5:7 - Cast all your anxiety on Him because He cares for you.

Join me.  I'm taking my dread and "casting it onto Him."  My palms are wide open.  I'm not pretending like unicorns are sitting in my hands.  It's dread.  And God will take it from me and sustain me because He cares for me.

Jesus loves me, this I know.
For the Bible tells me so.

Well, it's 3:03.  I gotta jet.
Courageously hitting "publish" now....