Monday, March 31, 2014

MRI Results...

Romans 5:3-5

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.

That is what is being worked out in Jon and I as I type.  Trials.  Endurance.   Strength of character.  Hope.  Love.

This afternoon, we met with Jon's neurosurgeon to get the results from Jon's recent MRI.  The results are not what we had hoped and prayed for.  When Jon had surgery to remove his brain tumor, the surgeon was thrilled that he was able to remove 95-97% of the tumor.  He said the remaining 3-5% was cauterized at the end of the surgery and shouldn't grow.  He said if it did, it would be very slow growing over time.  Unfortunately, Jon's tumor is not acting "as it should."  In the past 5 1/2 months, Jon's tumor has doubled - almost tripled - in size.  This type of tumor is traditionally very slow growing... Estimated at growing approximately 1mm per year.  Jon's tumor has grown over 6mm in the past 5 1/2 months.  The neurosurgeon is perplexed by this.  He said this is extremely rare and he basically never sees this happen.  

You can see Jon's MRI the day after surgery on the left, and his MRI from last week on the right.  :(

Jon will have to start Radiation in the next 2 weeks.  Technology is incredible these days, so the neurosurgeon is hoping to have Jon undergo "Cyber Knife."  He did warn us that our insurance will probably try to deny this special type, but he will fight to get it approved.  This type of Radiation would be so much better than "traditional" Radiation.  Would you please pray with us that our insurance would approve it?  Our Neurosurgeon would perform it - along with a team he is gathering.  I researched "Cyber Knife" tonight and posted the info below, for those interested.  

As Jon and I were driving home from the hospital, Jon was saying how he didn't even want to tell anyone about this.  He feels like this journey has been long enough for You All and that Everyone is probably tired of walking this long road with us.  My heart knows where His heart is.  Anyone remember my EGR post?  "Extra Grace Required."  Yup.  That's us right now.  So humbling.  Jon and I have been SO grateful for your love during this season.  Is it tough to continue to share all of this?  Yes.  Do we fear some may read this and go, "Really!?! More??  You guys are TOO much."  Yes.  Yet you all have been so faithful.  So loving.  So gracious.  So supportive.  All signs point to safety.  But our insecurity points to other places.  So we choose to lay down our insecurities.  So here we are.  Laying it out there.  Asking, once again, for prayer.  

We are confident in the goodness and sovereignty of God.  We know His love for us is extravagant.  We believe He will work all of this together for our good.  We have already seen amazing beauty from these ashes.  So we are not without hope.  

We invite you to continue on this faith journey with us.  Believe with us.  Taste and see God's goodness with us.  He is here.  So present.  The story unfolding is not one we would have written, but we trust.  

Thank you for your love and prayers.
Just as I started, let's end with the same Truth. 
Because sometimes we need to be reminded - not just every Sunday....  Or every day...  Sometimes we need to be reminded every hour. Or even within the same blog post... That your story, my story, will not be wasted.  Good things are happening and being developed.  Very good things.  

Romans 5:3-5

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.

What is the CyberKnife® System?

The CyberKnife Robotic Radiosurgery System is a non-invasive alternative to surgery for the treatment of both cancerous and CyberKnife Suitenon-cancerous tumors anywhere in the body, including the prostate, lung, brain, spine, liver, pancreas and kidney. The treatment – which delivers beams of high dose radiation to tumors with extreme accuracy – offers new hope to patients worldwide.

Though its name may conjure images of scalpels and surgery, the CyberKnife treatment involves no cutting. In fact, the CyberKnife System is the world’s first and only robotic radiosurgery system designed to treat tumors throughout the body non-invasively. It provides a pain-free, non-surgical option for patients who have inoperable or surgically complex tumors, or who may be looking for an alternative to surgery.

Sunday, March 30, 2014

The Good...The Bad...The Proud... And the Humiliating.....

My Week.  Just a glimpse, of course.  Don't want to brag too much about the awesome-ness that is Me, but....

(Starting TOP LEFT:)

1) My raspberries smashed in the Costco parking lot.  So, you know.  I did what most logical (read: desperate) moms of 4 do: Brushed off the smooshed ones and brought the rest home to eat.  

2) While I took a shower, Morgan dumped the (Costco sized) Corn Flakes all over the kitchen floor.  (Don't zoom in.  They're Frosted Flakes. Don't judge.)  And (not)shockingly, Reese was a fabulous human vacuum.

3) I almost lost my life when this baseball lodged under the gas pedal.  Ok, it didn't lodge. But it could have.  It hit my ankle and everything.  My minivan is a "Let's Make a Deal" dream come true.  Does something exist?  It's in my van.  

4) While I took a shower another day, Morgan opened the (Costco sized) bag of tangerines and pealed just a quarter size off of each one, took a bite, and put them in individual bowls. I didn't know if I was more annoyed that the tangerines were all wasted or that there were a crap load of dishes I had to clean.  

5) This is my thigh.  This is what my thigh looks like every day.  Look closer.  See those marks?  Those smears?  Jon finally asked me, "What is on your pants??"  Um, that is just my clear indicator of how tall baby Reese is getting.  Ever wonder how big she is?  Well, her nose reaches about thigh high.  She stands at my feet, holding on to my legs, crying, and wiping her snot on my pants.  All of them.  Pants, jeans, leggings.  Snot.  On each pair.  I've never been more non-sexy.  Ever.  

6) Family dinner at Chilis!  Wait.  Why is Reese naked and wrapped in a blanket? Because sometimes you think your child needs a diaper change.  But you're not sure if you're smeller is correct.  So you lean over to take a "peek" and before you can even lift her shirt, you see it.  It's coming down the outside of her pants.  And it's up her back.  All the way to her neck.  And oh wait.  It's also clumped on the high chair.  You don't know whether to throw up in disgust or hand her a medal.  Because let's be honest.  There must be great skill involved when poo can shoot in an 8 inch radius and explode out of a shirt neckline.  The NECKLINE.  Come on.  I don't want to brag, but that's talent.  Talent I'm sure can only be claimed by her father's side of the family.  



OK.  I'm a hopeless "glass half full" type of hot mess.  So just to even out the score, here's a glimpse of the other side of our week.

1) Jon rode a bike.  My husband, who had brain surgery just 6 months ago and was using a walker just to get to the bathroom... that guy rode a bike.  Anyone lacking a hero in their life?  Look no further.  Boom.

2) Jackson (age 9) was cast in our community theater's production of The Sound of Music... as Captain Von Trapp!  He had to hold a girls hand and gaze into her eyes for the audition.  I have never seen my son more miserable.  But "fake it til ya make it" never looked so good!  :)  Oh, and Jackson is determined to learn how to play the guitar so he can accompany himself live for "Edelweiss."  Did I mention I'm proud?  Did I also mention that Taylor (age 7) was cast as Brigitta?  My heart might explode with pride.  

3) I got to take Jackson and Taylor on a date to see The Muppets.  They had asked Santa for a movie ticket in their stockings this past Christmas.  Santa couldn't believe what an "affordable" request that was, considering all the high ticket items they could have requested.  So Santa gave them tickets to the fancy shmancy "Cineopolis Theater."  The one with the leather recliners and personal waiters.  Ridiculous.  So they finally cashed those in.  Speaking of ridiculous, does the world realize that The Muppets are "talking animal puppets?"  I'm the only person I know who gets creeped out by talking animal puppets, so as much as luxury theater is a treat, I found the experience quite torturous.  Did I mention they are puppets??  Puppets!!  I digress...

4) If the frame was wide enough, you would see the back of child #2 and #3 and you would see their matching "Elsa braids."  A french braid that starts on one side and goes to the other.  This is normal for good hair moms.  I, however, am a bad hair mom.  I can do a pony tail.  And a "bam bam" rubber band to the bangs. But french braiding?  Never.  French braiding that is sideways and resembles a Disney Princess?  When pigs fly.  Well those piggies must be pinching themselves right now because I BRAIDED!  Yes, I want a pat on the back.  Yes, I want oooos and ahhhhs.  I want it all.  I'm just that awesome.

5) Taylor wrote a song.  Then made choreography to go with the song.  Then she cleared out the garage so she could have a stage.  Then she vacuumed her stage.  Then she called us (the family) in.  She stood behind a curtain. She introduced herself.  She came out and performed.  We hollered and cheered.  At the end she handed out gift bags (pictured) she made for each person.  (even the babies.)  Each one had a bracelet, a "thank you for coming" note, money from her piggy bank, and a home-made "Mad Lib" for us to fill out.  Each Mad Lib was unique.  Each note, hand written.  Each coin, a sacrifice from her savings.  I am astounded by Taylor's drive, her talent, her generosity, her thoughtfulness.  This is true beauty.

6) Our family got to spend the day with Jon's extended family at the Long Beach Aquarium.  The wonder and appreciation that children have for creation is inspiring.  But that's not why this picture is included.  You know why it's included?  Because of Reese's shoes.  Look closely.  Reese, age 14 months, is wearing Stride Rite booties.  Ones with hard soles. Ones that help her WALK.  Reese is WALKING!!!!  Reese isn't perpetually on my hip!!   Actually, this is a huge milestone.  For the rest of my life, no one will perpetually be on my hip!  9 years, 4 kids and a "snip snip" later, my hips are mine!  My back is mine.  My arms are mine.  Oh no.  Oh wait.  My arms will never be mine.  Just typing that makes my arms ache.   Ache to hold.  And cuddle.  And keep warm.  And lift up.  And comfort.  I will do that for the rest of my life.  With joy.  But this week, I celebrate the sound of 14 month old footsteps in my home.  

Now THAT is a glimpse of our week. The good, the bad, the proud and the humiliating.  Nothing like a good old fashioned dose of "Living Out Loud!"  


Saturday, March 29, 2014

No MRI Results Yet...

Just a quick update to let you know that Jon's neurosurgeon got called into surgery last minute on Thursday...  Right before Jon's appointment to go in and get his 6 month MRI results... and Jon's appointment was cancelled.  So no MRI results yet.  The nurse that called said that the MRI results cannot be given over the phone - only in the in-person appointment.  She rescheduled Jon's appointment for this Monday, March 31st at 4:15pm.  We would love if you would continue to pray for beautiful, healthy results. 

Also, Jon is on day 7 in a row of extreme eye pain.  :(  He has struggled with eye pain off and on since surgery - some days are better or worse than others.  He's also had weeks where he has had minimal pain.  But a week ago, Jon's eye pain came on strong and has not let up.  It has been heartbreaking.  I have seen my husband frustrated at times, but never as much as this past week.  The pain kept him from a really important event Friday night that he had been looking forward to for months.  Jon was miserable and frustrated and mad and annoyed and sad and... all the emotions you would expect.  Would you pray that the pain would subside?  Would you pray that he would get some relief?  

Thank you.  We are grateful.
We will share the MRI results on Monday.....

Saturday, March 22, 2014

Update...Answered Prayer...New Prayer Requests...THANK YOU!!!

There has been quite a gap since I last blogged.  I have no excuse except Life.  And let’s be honest, Life is a pretty darn good excuse.  And yet while I’m busy Living, when I was recently asked what I would do if I had more "me" time, “write” was near the top of my list.   And so I did some soul searching in the form of comparing my blog history and dates, and found the clear-cut reason why I haven’t written regularly in awhile.  Ready?  The meals stopped.   Yup, that’s right.  After somewhere around 88 meals, I was left to fend for myself.  I know, right?  You’re thinking it, too.  How horrible that I had to actually begin cooking for my own family again.  The nerve!   It’s true.  The calendar confirms.  I started “slowing down” my blogging right around the time the meals stopped.  So, you know.  There’s a big learning here.  A huge bottom line: I’m clearly a low-functioning hot mess.  I mean, 88 meals.  EIGHTY EIGHT.  (approximately)  We have been loved on and provided for beyond what we deserve.  To say we are humbled is an understatement.  In October it was a pumpkin patch.  In November it was anonymous gifts signed “Jesus Loves You!”  December was a “Secret Santa.”  Every week of every month has left us drowning in God’s faithfulness.  Our children have seen thoughtfulness and generosity expressed in beautiful ways.  They will be forever changed.  We all will.  So is it with severe sarcasm that that I wrote the above?  Yes.  But am I super bummed about my lack of writing and am I really a low-functioning hot mess?  Well, yes.  That part is true.  I still have not mastered Life.  My kids need haircuts.  My laundry isn’t done.  My 14 month old still hasn't had her 12 month check up.  I haven’t found the key to carving out time to write in the midst of it all.   But I trod along.  I am here.  Today.  And I hope to be here again in a few days.  And a few more after that. 

All that to say, I have some updates and some prayer requests!!!! 
(If we are Facebook friends, you will know some of these already.  But I’ll post them here, just to make sure we all are on the same page!)

1) Jon started back at work!  He is working part time – 20 hours/week and is loving being back!  He will be the first to say that heading back to work sounded like a “treat” after being at home for so long with 4 kids.  :)  (I’m pretty sure he has a new respect for my "job" at home.)  ;)

Jon has a new role at work right now.  He is not yet able to jump back into his role as Worship Pastor because of his eye pain.  Some days (like the past 3 days in a row!), he wakes up and his eye is SO painful.  He has a hard time functioning and has to manually hold it closed etc..  If that were to happen on a Sunday morning, the church would be in a tough spot.  He couldn’t necessarily “call in sick” to the morning services.  So because his health is “unpredictable” and “unreliable” it’s not wise for him to jump back into that role.  With being permanently deaf in his right ear now, Jon also needs to be careful to preserve his one working ear.  It’s a tricky new normal.  So Jon is currently overseeing Outreach at the church.  And he is LOVING it.  If you know Jon, you know outreach is something he is passionate about and you’d agree this role is a fantastic fit.  There are times he comes home with his tank totally filled up.  And there are times he comes home absolutely exhausted.  He often comes home with his eye just worn out.  But he loves being ‘back in the game.’  :)  

I really can’t talk about Jon’s work without sharing how AMAZING they have been through this whole journey.  Jon has been on staff at Mariners Church for 4 ½ years now and he is such a different person today than the day he started there.  Mariners has provided such a beautiful place for him to grow, learn, be stretched… And through this experience, we have seen how Mariners loves.  And it has been overwhelming.  Since the day of Jon’s surgery, and for his entire 4 months off of work, the staff donated vacation days to help cover the remainder of Jon’s salary after disability.  Yes, this incredible staff gave up their most precious thing – their vacation days/the time they have off with family and friends – to provide time for Jon to stay home and heal.  What a gift!  Talk about humbling!!!  Jon and I have been blown away by this beautifully generous community we get to serve with.  Wow!

2) Jon got his drivers license back!!!  Yes, after 5 months of being his chauffer, my title has been stripped!  ;)  Jon had to jump through many hoops and tests to get it back, but he did it!!!  The other day, we picked the kids up at school and Jackson was just in shock.  “Dad!  You’re driving!” he yelled, as he approached our van.  It was a great milestone we got to celebrate as a family. 

3) ( WARNING: This one is BIG!  Ready?  Are you sitting down?  Seriously.  Sit.  OK.) 

JON’S FACE MOVED!!!!!!  Yes, the right side of his face!  The side that has been paralyzed with NO movement!!!  The side that has been without movement or any life for 5 MONTHS and 8 DAYS!  THAT side of his face moved!  This is what we have prayed about since the day of his surgery on October 3!  The doctors had said that there was a 50% chance Jon would be left with life long facial paralysis.  And they said if his face were to have movement again, it would most likely begin to happen in the first 6 months after surgery.  So you can imagine after we hit the 5 month mark, we had to fight hard to not lose hope.  We were at Jackson's baseball game last week when Jon turned to me and said he thought he felt something move on his face.  When I saw it, I almost couldn’t believe it.  We were ECSTATIC!  I immediately grabbed my phone to capture the miracle on video.  I'll post it below.   :)  Now let me warn you.  It is teeny tiny movement.  I mean, some people have watched it on a giant screen, with a magnifying glass, and still can't see it.  But trust me.  It moved.  :)  The reality is, movement is movement.  Movement means that the facial nerve IS in fact in tact!  And there IS in fact life in the nerve!  The potential is HUGE.  The possibilities are endless!  Are you squealing with excitement at God’s goodness with us?  Are you dying to see it with your own eyes??  ;)  Here’s the  video of the first sign of movement....

Did you see it????  :)  

OK.  In case you just couldn't see it in that video, I have an updated one.  Just a few days later, the movement got a little stronger and easier to see.  Ready?  This is a super quick video Jon sent from his office at work but it ROCKS!!!!

And if that weren't enough, the movement has allowed Jon to open his mouth a tad more.  Look at this incredible before/after photo!  

I will be honest, Jon was EXHAUSTED after taking that photo and doing his new "facial tricks."  He says he feels like he just did sprints after he works to make his face move.  Who knew moving teeny tiny face muscles could make you feel so physically exhausted!?!?  But it's pretty incredible!  I am SO proud of his hard work and endurance!  

So of course a HUGE, ENERGENTIC, PASSIONATE “Happy Dance” is definitely in order!!!  THANK YOU for celebrating alongside us!  Thank you for praying for us!  Thank you for believing with us!   We are grateful!   

We would love for you to continue praying with us!  Here is the biggest thing on the horizon:

*Jon’s 6 month MRI is THIS MONDAY, March 24th at 8:00pm.  (well, about 10 days shy of 6 moths.)  His neurosurgeon successfully remeoved 95-97% of Jon’s tumor.  Our prayer is that the remaining 3-5% is exactly that – still at the 3-5% size.  Better yet, let’s pray that it’s gone!  :)  What we do not want to see, is any growth.  If the tumor has grown, Jon will have to start Radiation.  Would you pray with us that Jon would not need Radiation?  Would you pray that the tumor has not grown at all?   We have an appointment with Jon’s neurosurgeon on Thursday at 2:45pm to get the results.  I will keep you posted!

Since I'm boldly asking for continued prayer, would you pray with us for a few more things?  :)

1) Please pray that Jon's face continues to heal.  Pray that his face continues to move more and more.  We are so grateful for the movement that has begun.  At the same time, we are praying for full restoration!  Would you join us?

2) Pray for our kids.  They have been such troopers during this whole process, but I know it has taken its toll on them.  Jackson internalizes.  Taylor is overly-emotional.  Jackson says everything is "fine."  Taylor says she just wants "her old daddy back."  Some days I think they need counseling.  Other days I think I should homeschool them and just love on them all day long.  Then I wake up and realize I'd be the worst home school mom ever.  So I consider the counseling route again.  ;)  Honestly, they are doing really well.  And the average person wouldn't even notice a thing.  But I know them.  And they sometimes "leak" a "neediness" that wasn't there before.  Would you pray with us for them?  That they would feel God's continued love and presence in every area of their lives?  

Thank you for continuing to walk this road with us.  You have no idea the comfort that comes in knowing we are not alone – but are surrounded by incredible men and women who love us and care enough to pray for our needs.  We love you and thank Jesus for you!