A day in the life of the Strebe's

"For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." (Ephesians 3:14-21 NIV)

5:30AM. Emma Kate cries in her bed.  I rub her back and get her back to sleep.
6:15AM. I get up to prepare for my tutoring lesson.
6:30AM. Luke gets up and comes bounding in where I'm working.  I send him immediately back to bed!
7:15AM. Jon leaves to go to Lab Corp to get blood drawn.
8:00AM. Jon comes back only to say it was already too crowded.  Did not have time to wait because...
8:20AM. I leave for tutoring.
10:30AM. I start making my "medical" phone calls that are on my list.  Top on list:  call Indiana Cancer Center to make sure they received ALL of Jon's records.  I find out they have not received pathology slides that were overnighted this past Friday.
10:32AM. Jon calls Emory to find out where the path slides are.  He finds out they had JUST been delivered and signed off on.
10:45AM. I start calling Indiana back.
11:15AM. Secretary confirms that everything we need has arrived.
11:30AM. We head to our pool for the kids.
12:15PM. Secretary at Indiana calls and says she knows we are from far away but Dr. Lawrence Einhorn has an appointment in the morning at 9AM.  I responded:  WE WILL BE THERE.
12:16PM. Jon calls his mom and tells her we need them to babysit.
12:16PM. I start calling a friend that I've reconnected with at Piedmont infusion room (her best friend is battling cancer and uses our same Atlanta doctors. This friend texted me yesterday and said "I'm praying that y'all will get an appointment at Indiana this week.  When you do call me and ill hook you up with buddy passes.  I can get them in 15 minutes."
12:30PM. We cry together and she starts working on reserving tickets
1:15PM.   Jon leaves the pool to go back and get his blood work done.
1:30-2:00. I take kids home and get them down for naps ASAP.
2:00PM. I start booking a car at Indianapolis airport.  I print off all new patient paperwork.  I print off flight confirmations.
2:45PM. Jon and I get packed and get ready to leave.
4:00PM. I go over with Jon's mom everything she needs to feed kids, and all she needs to know to take care of them!
4:30PM. Jon and I leave for the airport.
6:30PM. We get on our flight.  And that's as far as we have gotten!:)

Are you exhausted?  Because I am just re-counting our day.  God is good and he continues to show his faithfulness in abundance to us!!  I usually freak out about lots of things but today I honestly had a peace either way about the Indiana appointment.  We are in great hands at Sloan.  I just wanted to be able to lay all our options on the table and let God lead us.  But today I honestly felt like if it was God's will that we would get in.  And if not God was shutting the door.  Jon was more hesitant about this appointment because he doesn't want it to "confuse" us.  Please pray we will not feel confused when we leave.  But yet we will have clarity with where Jon should be treated.

I usually see the glass half full and Jon sees it half empty. Today when I found out we could get in with Dr. Einhorn (he pioneered the treatment for testicular cancer in 1974 that put the cure rate from 10% to 95%.  He also led the medical team that treated Lance Armstrong.). I just felt like God had totally paved the way and opened up an appointment for us to get right in--a miracle!! Jon's response was "oh great!  If Dr. Einhorn wants to see me, my case must be bad!!"  O brother!! We think 2 totally different ways!!

We are humbled that you would join with us in prayer for a miracle.  God can use these doctors in Jon's life but God will receive all the glory!! Pray for us in the morning as we have our meeting.

Most people know Lance Armstrong's cancer story and his LIVESTRONG foundation.  The day after Jon found out cancer was in his lungs--December 2012) he told me he wanted bracelets that said GOD STRONG.  Well in our whirlwind lives we never made them. I now have a friend working on making those to pass out to everyone.  They will be Duke blue because that is Jon's favorite team.

We are GOD STRONG!!!!!

Surprise trip for Jon!

I decided last week a surprise fun trip for Jon would be nice.  So after his appointment in Atlanta on Monday, we headed to Gatlinburg, TN.  We spent a day and a half at Dollywood, and then some time at a little mini water park attached to our condo.   The kids had a great time and they always love that park.  Jon was pleasantly surprised.  Hopefully it was somewhat of a break for him.  Karen and the girls joined us on Wednesday at the park.  It allowed Jon to go ride some of the big roller coasters with them while my sister and I took my kids to ride little rides.

We did get news of Jon's latest blood work while driving into the park.  Unfortunately his tumor markers are rising. We are pretty certain at this point that he will have more chemo.  We will meet with the doctor in about a week to discuss the details.  I have also initiated an appointment with Dr. Einhorn at Indiana university.  He is the doctor that is famously known for inventing the cure for testicular cancer and for curing Lance Armstrong--although we all know who really healed him! Please be in prayer about this.  We already have all of our medical records in and are waiting on the path slides to get there. If it's God's will we will get an appointment quickly.  If not, we completely have a peace about being at Sloan.  I want to be able to lay all of our options on the table from the 2 best testicular cancer doctors in the world.  But at the same time will not allow it to delay the process.    Thanks for praying!

We remain very hopeful and positive.  But at the same time we are human and we have all the emotions that anyone would have.  There are moments we are angry, confused, frustrated, overwhelmed, scared and sick to our stomachs!  But God also gives us moments of hope, encouragement, energy and the fight to get through what we are faced with.  We know that we will face many emotions that are all very normal.  But at the end of the day thank goodness we can have faith in Christ Jesus!  Here is a little quote a friend sent me from a Beth Moore Bible study:


Holding on to the truths that God is who he says He is, He will do what he says He will do, I am who God says I am, and Gods word is alive and active! Praying in faith that God is the Great Physician! He is able to heal and restore our physical bodies! He is the Great I AM!

Here is another fun story of what God did at Dollywood.  I was sitting on a train all for Ryan!  It was hot!  There was black soot everywhere.  There were tons of people packed into the train.  Lets just say it was not an ideal situation.  But you do anything for your kids, right?  So there was a man behind me that said "please get this train going."  So I turned around and told him this was exactly why my husband wasn't on the train and chose to ride roller coasters.  He leaned up to me and whispered "I'm only doing this for my family.  It's my last hurrah.  I have colon cancer and now a large tumor in my lungs.  But I can't let my family hear me talking bout it."  So I quietly and quickly told him about Jon.  He didn't say much because his family could hear us.  At the end of the train ride he said "what is your husbands name?  I want to pray for him."  So we exchanged names, said we would pray and went on our way. About an hour later my sister and I and the kids ran into him again. He came over to talk to us without his family around.  He teared up and said "I know where I'm going, but I just don't want to leave my family behind."  He has a wife, kids and grand kids (he is 66 yrs old).  He was clearly a Christian man.  It was the coolest conversation.  So my sister and I left and soon after ran into Jon.  I took him down to meet Mr. Jimmy from Piedmont, NC.  He was sooo happy I brought him over and said he was thinking when we left how he wished he could meet Jon.  He shared some verses with Jon.  They talked for a few minutes.  They both told each other they would be praying for one another. It was the coolest thing. It has been neat to see the different people God has put in our lives along this journey.  So if you think of it today, please pray for our friend Jimmy.  His days are limited.

 There was a water park at the condo we stayed at.  This is Luke going down the slide.  They played for hours and had a blast.

 Here are the FAB FOUR about to head down the slide.

At Dollywood Park catching a much needed water break!

Luke on two of the kiddy rides.  

Super Sweet Story

We lay hands on Jon every night and pray for God to heal his "boo-boo's."  Ryan is my more quiet one, not as quick to express his emotion.  He is also my one that has the SWEETEST heart, always wanting to serve us.  Almost every night after I pray, Luke and Emma Kate pray out loud.  We ask Ryan if he wants to pray and his says NO!  So we tell him that's ok, you can pray in your heart when you lay in bed.  So last week he said "I pway in my hot (heart)."  This week when we sat on the couch to pray, he came running over, put his hand on Jon's stomach and starting praying out loud!!  I have no idea what he said--he still doesn't talk real well--but it was so sincere.  Then he ended it with a big AMEN!

Jon took all the kids to Chick-fil-A on Friday dressed like cows!  Too cute.  I cannot believe the babies turn 3 this Saturday.  They truly are not babies anymore although I will always call them that!  Do you like the "Princess cow?"

The continual roller coaster

Again, I hesitate to write because our situation literally changes by the day and week.  So basically the decision on the next step completely rests on Jon's tumor marker (his HCG number).  Well, his tumor marker is jumping around.  One week it is low, one week it is high.  The doctor is trying to get a "pattern" with it.  So far, there is no pattern!  So Jon will continue to get his blood work done weekly.  It is super confusing.  And there is so much more detail I could write but it is just too involved.  Again, the next step is either surgery or more chemo.  These residual masses on his lungs could be one of 2 things and each require a different treatment.  Please pray that God will give the doctors wisdom and that he will give us a peace about the situation.  We are under a great deal of stress and emotionally this is very difficult.  Please especially pray for Jon.  I cannot imagine being under the stress he is under and dealing with this heavy of stuff!  He needs some extra prayers just for his well being!

Emergency 9-1-1

We had a great time in Dallas with Aunt Sara.  We got to see her new house and be in "her world."  It was such a great and special time especially for the kids.

Here we are feeding the geese in a beautiful part of Dallas called Highland Park.  The geese were very friendly! (sometimes a little too friendly)

 There are 2 people I would love to meet.  President George Bush (43) and Michael Jordan.  Since we were in Dallas we couldn't pass up the chance to go to the new library and museum.  It was really cool and Luke learned a ton.  Jon is not real into these kinds of things so my mom, Luke and I went.

 Luke feeding the geese and trying not to get bitten!

These cute bears at a park near Sara's house.

The babies petting the goat at the Dallas Zoo.

Ryan LOVES animals.  He wants to become friends with ANY animal he comes in contact with.  So when he leaned his head onto the glass and said "AWWW".  This is how the panther responded...not too thrilled!  Funny thing is Ryan didn't even MOVE when he did it!

This is everyone outside the Savannah airport.  They were ready to go to TEXAS!!

 

I have had a sneaky suspicion that Luke's allergy to dogs is getting worse.  If someone has an inside dog, and he walks into their house he begins sneezing and itching his eyes.  Also, if a dog licks him or their tail hits him he often breaks out in hives.  So I did go to Sara's prepared with meds and inhaler (she has a dog).  So I did notice that his allergy was getting worse each day.  I did hear some wheezing toward the end of the trip so I gave him his inhaler and tried to get him outside as much as possible.  We got on the plane Monday and headed to Phoenix and I began to see his allergy was getting worse and worse.  I continued giving him the inhaler but it didn't seem to be helping.  On the car ride to Amy's (Jon's cousins where we were staying in Phoenix) Luke got very upset and wanted me to hold him.  He wouldn't drink anything, or talk.  We pulled over and I held him.  We talked about going to urgent care but he said he could be brave.  We put him back in his car seat and headed to Amy's.  By the time we got there he was bawling.  We got him out and got him calm but started to realize the severity of the situation.  He completely stopped talking, wouldn't eat or drink, turned pale and then threw up.  I was in the process of calling our pediatrician and the nurse could hear how bad his wheezing was over the phone and advised us to take him to the children's hospital ER.  I gave him another 2 puffs of the inhaler and we headed to the Phoenix Children's Hospital.  He was very quiet on the way and laboring to breath.  I never panicked but I was getting really concerned.  We got there and they were VERY swift in getting us in.  They listened to him right away and whisked us to a room.  Immediately the respiratory therapist came in and put a mask on him.  The doctor came in.  Everyone was SO great.  They gave him steroids and gave him an hour long breathing treatment.  He was clearly having an asthma attack.  After that his oxygen saturation was still low so they observed him for a few hours.  They finally felt comfortable discharging him but sent him home with another inhaler on double what he normally takes and steroids.  In 2 days he was doing just fine, but this is how we started our Phoenix vacation.

This is when Luke's oxygen saturation was low.  He was getting oxygen.  He did not like that at all.


Below is Luke getting his hour long breathing treatment.  He was a trooper and loved the movies that a Children's hospital has to offer!

Had to add this one in here.  This is Jon in the hospital cleaning his shoes after Luke had thrown up all over them!  You know Jon and his OCD behaviors!:o)

 

Please pray for us.  At times like this we do not feel like we can take anymore stress!  Sometimes I feel like I could just crumble and melt.  I told Jon we are trying to see how many hospitals we can visit across the country.  Jon so far has gone to 2 in Atlanta and New York.  Luke has gone to Orlando, Bluffton, and Phoenix.  And I have been in Savannah.  We don't need to visit anymore hospitals in anymore states.

 

We have had a great visit with Jon's family and especially his grandmother, Roma who is 93!  She is so sweet and the kids LOVE her and she LOVES them.  Here are some pictures.

 





Jon's uncle is a farmer.  This was the highlight of the trip for Ryan!  He LOVES tractors and big buses and trucks.

 

 

Always nice to have a "Nanny" on the trip!  They all wanted to be with her on take off from Dallas!  Jon and I just sat over by ourselves and enjoyed watching her...LOL.  She really debated about coming with us but I told her I knew why she was there when Luke had to go to the ER!  She stayed with the twins!