Inheritance of Hope/The Strebe's new motto

Jeremiah 29:11
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you HOPE and a future."

This past weekend we had the priviledge of attending a Legacy Retreat with an organization called Inheritance of Hope.  Their mission is to inspire hope in young families facing the loss of a parent.  Inheritance of Hope is a faith based organization.

I'm going to rewind our lives a little.  Back in September 2013, when we first arrived at Indiana University Medical Center and Jon started his high dose chemo with stem cell transplant, a nurse approached us about applying for an all expense paid retreat to either New York City or Disney World in Orlando.  She told us it was for families facing a life threatening illness and we qualified.  Of course it hit me like a ton of bricks.  Jon was facing a life-threatening illness and our family would qualify to apply.  I started bawling.  Jon, on the other hand, said APPLY!  It's a free trip to Disney!  So, being the submissive wife I am (HA!), I filled out the paperwork.  It was only a few weeks later that I got a reply from Inheritance of Hope and we had been accepted!  It definitely gave Jon something to look forward to as he faced a very grueling schedule of high dose chemo.  We decided on the February trip to Disney.  We originally thought Jon would still be on oral chemo during the time so we were a little hesitant.

So we just put this in our back pocket and remembered that we would have something to look forward to after Indy, surgery and check ups.

Strebe's new motto:  "You can't make this stuff up"

Let me preface this by saying prior to going to Orlando, Jon and Luke ran fevers and had bad congestion and Luke had thrown up one night.  Ryan had run a fever and had just started the congestion.  We were passing a sickness around but the kids had been pretty good the day before we left.

Being the adventurous person and mom that I am, I decided to take the kids by myself down to Disney early on Thursday and have some fun before the retreat officially started on Saturday.  We left on Thursday morning, and the trip went great!  (Ironically I haven't travelled alone with them since they were babies).  We got down to Disney about 3pm.  We checked into our hotel room and got settled.  I wanted to get the kids to bed early that night so we headed to Chik-fil-A around 5.  The kids played on the playground and attempted to eat their dinner.  About 5:30 Luke started complaining of his ear "popping" and Ryan had gunk just flowing out of his eyes from the cold the boys had.  I gave Luke tylenol thinking if it was pain that would settle it.  I realized they were all tired so took them back to the hotel.  By the time we got back I realized Emma Kate had a 102 fever and Luke was in so much pain he was bawling.  He would sleep for 30 minutes and wake up just crying SO bad which is extremely abnormal for him.  At this point I'm completely kicking myself for coming by myself.  I'm thinking we could have just come with Jon after work on Friday like we had originally planned!  So I get the babies to sleep and call Jon.  Part of me said they will be fine in the morning and we will move on with our day at Disney.  The other part of me said if things go south and I'm here by myself I'm in big trouble tomorrow.  After Jon and I talked we decided he better get in the car and come down (as if he hasn't missed enough work).  I felt TERRIBLE.  He got to our hotel at 2am and entered to find Ryan crying because his eyes were stuck together from all the gunk.  Luke had settled by now because I gave him a second dose of Tylenol.

So the next day it was COLD and RAINY.  Miserable day.  We went to ride the monorail that was not operating.  We then went to a fun restaurant and while we were there Luke was going downhill fast.  He had not eaten for a couple of days and he was just miserable.  We decide that we must take him to an Urgent Care.  We found one right around the corner from where we were staying but we get there and it is a complete hole in the wall (Jon called it trailer trash because part of it was a trailer).  So I kept searching on my phone and found a pediatric one in a nearby nice town.  We went there and waited for it to open at 4pm.  We were first in line!  They check Luke out pretty quickly and I was very impressed with the doctor.  He diagnosed him with pneumonia and double ear infection.  He put him on antibiotics and ordered us to do his breathing treatments every 4-6 hours (his asthma plays into all this). We leave and he goes downhill even more.  Spikes a 102 fever, sleeps 14 hours.  I was very worried about him.  He was one sick boy!  Saturday we took it easy so that Luke and Emma Kate could begin feeling better.

Our conference started on Saturday night where we met with other couples with life threatening diseases.  The kids were taken care of by volunteers.  All 3 of our kids were together in the "fun" room.  Luke had started feeling a bit better by this point.  Jon and I were in a group where we all introduced ourselves and briefly told our story.  These stories are eye opening and sad and heart breaking.  And all these people are pretty young (23-55).  One 23 year old has testicular cancer, treated at IU at the same time as Jon and his high dose chemo did not work.  He is doing clinical trials.  A lot of people with brain cancer.  A young lady with 3 small children has cancer and had to have her leg amputated.  She is also being treated at IU Cancer Center.  Some very strong in their faith, some searching for God, some realizing they have walked away from God, some with no faith at all, no belief in God.  16 families from 14 states come together to enjoy a super weakend while having the support of people going through similiar circumstances while Inheritance of Hope volunteers serve each and every family.  We didn't have to think of one thing, everything was all done for us.  We ended the night with a dinner and we had a guest come knocking on the door!  It was Mickey Mouse!!  So special!

More drama:  Saturday night Emma Kate throws up half the night.  Poor girl, it was sad.  I was changing beds at 4am because she had thrown up on both beds.  I couldn't get to her in time.  Jon took care of her from that point forward and it was so cute because they had a little system.  Most of you know Jon has lost a lot of hearing and so Emma Kate layed on him and they worked out a deal that everytime she needed to throw up she would tap him on the shoulder (because he couldn't hear her) and he would run with her to the bathroom.  I think only one time they didn't make it and it went all over the floor.  He was getting up with her every 15-30 minutes.

Jon and Emma Kate slept during our morning session and then we all headed to Magic Kingdom.  It was a great day.  2 volunteers, Bobby and Jessica stayed with us the whole day and helped us push strollers, carry children, literally whatever we needed!  It was amazing and they were a blessing!  The kids fell in love with them and miss them already.  We had a great day in the park and stayed until 10:30pm.

Monday we had morning counseling meetings and split up with caregivers in one group and ill people in the other group.  IOH does a great job of providing resources and support for everyone.  They also provide fun, memories, and legacy opportunities for the participants.   We then headed to another fun day at Universal Park with Jessica!  We were all GODSTRONG that day.  Jon and I even got to ride a roller coaster together.  We headed back by 5:30 so that we could have Kids Night Out/Date Night.  IOH plans your date for you and takes you there!  They also set up a place you can go and make a legacy video for your children.  Jon and I made it fun and did NOT cry!  Then they provide a counselor to meet with you as a couple to touch base and talk about whatever is on your mind.

Tuesday morning they do a closing ceremony, present the gospel and send you off to Sea World.  We got home at 11:30pm Tuesday night.

It was a great encouraging, uplifting relaxing and eye opening experience.  We were able to share our faith very openly and share that being GODSTRONG is what has gotten us through this trial.  Jon and I were able to share some special things in our groups when we were split up.

If you would like to know more about this organization please visit:

www.inheritanceofhope.org

There is much opportunity.  You can become a volunteer.  You can become a donor.  You can financially support a family to be able to go on this retreat.  If you live in the Orlando area you can definitely get involved in many ways.  You can also nominate a family that one of the parents has a terminal illness.  Check out the website.  It is a great organization!  I highly recommend you looking around the website and finding out more about Inheritance of Hope.  Also go to Inheritance of Hope's Facebook page.  Their cover photo is LUKE!!!

Here are a few pictures of the retreat.

Inheritance of Hope and all the staff and volunteers: YOU ARE A BLESSING!!  THANK YOU!

Times are changing

Sadly, my kids are growing up.  Please understand that if Jon was writing this post it would have a whole different feel and a more positive spin on it.  For some reason I do not embrace these new stages the way my husband does.

From December 2012 to November 2013 our lives were "hard."  When Jon was diagnosed with cancer we had 2 2 1/2  year olds and a 3 year old.  They were all just flat out "hard."  It was constant.  From when the twins were 2.5 to 3.5 years old, they were draining and took lots of energy to parent.  Don't get me wrong, there were also times of joy, and laughter.  But for the most part those ages are hard to deal with in a good situation and we were dealing with them in a bad situation.  

In the past 2 months we have come leaps and bounds.  Our house has changed drastically.  We no longer carry any strollers in our car, 2/3 can buckle their own seat belts, no more naps which means they all go to bed super easy by 7:30PM, I have gotten rid of all baby clothes and baby gear which was stored away in our garage, all the kids actually "get" discipline and time out actually works, they can all take 2-3 directions and go accomplish them, I can do more than 1 errand at a time with all 3, the last of the 3 is learning to potty train this weekend so NO more diapers--when the twins were born 3.5 years ago we were changing 28 diapers a day, have gotten rid of all the cribs and all are in big beds, Jon now takes all 3 out with him on errands including the grocery store, I can get 1 babysitter for all 3 kids instead of having to hire 2 at a time,  no high chairs, no more baby gates and on and on.  You get the idea that life is WAAAY easier than a year ago.  Not to mention our kids are so much more emotionally stable because Jon and I are more emotionally stable and less stressed. 

Here is a picture of our weekend potty training.

Here Ryan is conquering fear #1:  his fear of wearing underwear and not a diaper.  After he conquered his fear, he wanted nothing to do with his diapers or pull-ups.

Here Ryan is conquering fear #2:  his fear of sitting on the potty.  We helped him out by buying a small potty.  My boy is always on the go so once he conquered sitting on it, he would sit and scoot around and play.  It was hilarious.  He would be WAY too bored if he had to sit on the big potty all alone in the boring bathroom!

On a final note, Coach K has raised the bar for all of us.  He wrote this note to us the day after we went to the game.  I'm forever making excuses that I don't have time to do this and that.  Well, if this man has time, I have time.  No excuses!  He has been amazing and gone way above and beyond especially during the middle of his season!  He clearly doesn't need 10-12 hours of sleep a night like I do, HA!

The Duke Game -- A Celebration and a special phone call

This past Monday night we were honored and grateful for the opportunity to attend the Duke vs. Virginia game at Cameron Indoor Stadium.  It was an amazing experience and dream come true for Jon.  This is how it all started.

Jon has always had a passion for Duke Men's Basketball and the great coaching of Coach K.  I ironically have also always pulled for Duke Men's Basketball, just not quite as passionately as Jon.  So back in August when high dose with stem cell transplant became a reality, some friends gave us some advice since they had been through the same thing.  Our friends told us to have something to look forward to at the end of the journey.  So my mind starting thinking and going to town as usual.  I told a friend of mine that Jon's dream has always been to go to a Duke game at Cameron Indoor Stadium.  He encouraged me to write a handwritten letter to Coach K and send a picture of our family.  So I did!  And I sent it to Coach K's administrative assistant.  3-4 days after I mailed the letter, Ms. Brown called me!  She said,  "I just read your letter and you let me know when Jon is finished with his treatments, and we will get him to a game."  My heart was overjoyed for Jon.  I told him about the conversation and he was thrilled beyond belief.  

Well, in the next couple of months, Jon would receive from Coach K lots of Duke gear, and signed posters from him encouraging him through the process of bone marrow transplant.   Coach K also hand wrote a note to Jon and I inviting our whole family to a game at Duke.  It was a huge encouragement to Jon plus he said almost everyday, "I cannot wait to go to the Duke game.  Coach K will never know what he has done for me."

So in November when Jon had completed his treatment and his surgery, I called Ms. Brown and she gave me 3 dates to choose from.  It is just so cool how it worked out and how the night could not have been more perfect.  It was truly a magical night.  

Jon and I decided that unfortunately it would not be enjoyable to bring the twins.  So we only took Luke.  We drove up Sunday and stayed with some friends that lived 30 minutes away.  We went to the Duke campus on Monday and just toured around, went to the book store, and was able to be in Cameron for about 45 minutes during the day.  That was special because we were just able to soak it all in with no one else there.

We then hung around campus, ate, and then headed to the game.  We picked up our tickets at will call and headed in.  Low and behold our tickets were directly behind the Duke bench.  We could touch the players.  We could get great pictures.  It was amazing!!  So Coach K is the last coach to come out and he comes out right before his players are announced.  So as the players are getting ready to be announced, Coach K heads over to stand where I'm sure he always stands, but comes toward us.  He heads right to Jon, shakes his hand, taps Luke on the head and shakes my hand.  We were blown away!  Jon and I have both been coaches on the high school level and we know the stress, and focus you are in before a game.  The fact that he remembered we were there and took the time and energy to shake our hands blew us away.  

So the game was a great one.  It ended up being a close game and very intense.  BTW, Luke fell asleep the last 15 minutes on my shoulder!!  He was so funny throughout the game.  At the beginning of the game he told me it was the LOOONGEST game ever!  And WAAAY too loud.  LOL.  But overall Luke loved being a Cameron Crazy.  We were even on TV several times and especially the replay of what would be the winning shot.  It was SO cool to see Jon, after what he has been through the past year, stand up and go crazy!  Here is a picture!  Jon is in the blue Duke shirt raising his hands.

So the craziest, greatest part came after the game.  So Jon and I hung around for a little while just soaking it all in.  We were able to meet up with Ms. Brown, tell her thanks and Jon got his picture with her.  We were set to drive all the way back home that night because Jon needed to be at work the next day.  We got ready, and started walking across campus to the car.  My phone rings.  It says Durham.  I say, well I better get that.  I pick up the phone and this is what I hear.  "Donna, this is Coach K."  I'm trying my best to gain my composure and not act like a dork.  He starts talking about the game and how his guys fought so hard.  I quickly put it on speaker phone and tell Coach congrats and that I have Jon on the line.  So we talk to him for probably 2 minutes.  We are standing in the middle of campus receiving a phone call from Coach K who wanted to thank us for coming to the game.  Really??  For those of you who do not follow basketball and have no clue who Coach K is, is has the most wins in NCAA history, he is the men's USA basketball coach, and he is one of the most famous basketball coaches ever.  But you know, way beyond his accomplishments as a coach, this showed tons about his character as a person.  The fact that he would take time to pick up and call us after a game, blew us away!  He didn't have to do that.  After all, he had already hand wrote a note to us, and shook our hands before the game.  It was just an unbelievable moment for us.  My heart was so happy for Jon.  It was truly a magical night and a perfect night for Jon to enjoy Duke Men's Basketball at Cameron Indoor Stadium.

My second greatest memory came right after we hung up with Coach K.  Luke says to us very matter of factly, "was that Coach K on the phone?"  It was hilarious.   Just like he was an uncle, or friend that we get a call from daily.  He was very into Coach K the whole game.  Always wanting to know where he was.  It was super cute.  When we told him, yes, that was Coach K calling, he said, Oh, I want to meet him. Super cute!

Like Jon said, it was a lasting memory of a lifetime!  Especially nice to be on the heels of Jon's great news of a clear x-ray and fantastic bloodwork.  God is good.

And we are 

GODSTRONG!

Sweet Ms. Gerry Brown!  We are so grateful to her!

Luke as a Cameron Crazy!

 The Cameron Crazies.  Luke liked acting like them.

Jon enjoying Cameron and taking it all in the afternoon before the game.  Luke was practicing how to be a Cameron Crazy!

Luke's 5th Birthday and Port Removal

Happy Birthday to my baby boy Luke who turned 5 yesterday.  He is such a super special boy and loves the Lord with all his heart and wants everyone else to also!  He is a true miracle and gift from God.  Although we did not get to see him until 7PM last night, he had a "perfect day."  My sister and her girls helped him celebrate and did an awesome job.  My mom made him a cake we had last night.  It was so good to hug him when we got home from Indy and tell him his birth story.  He was born at 9:21PM so it was perfect that we told it at that very time.  He always loves hearing it.  

Also, we feel some closure.  Jon got his port out today (Friday).  He is officially finished with all his treatments.  His scans are clear and bloodwork looks fantastic.  And now the last piece of the puzzle was the port removal(doodles--as my children refer to them).  The nurse taking care of him today even remembers him from back in February!  She remembered what room he was in and had told us we would party when he got it out.  So today the nurse was doing the party dance!!  

Please do not stop praying.  When Jon comes to your mind please remember to pray for protection over his body.  Pray that the cancer will not come back.  Pray that he will have no other complications from all the high dose chemo he received.  Pray he will get his hearing back.  Pray his neuropathy will get better.  And most importantly pray that God will continue to use him to tell his story to others.  God has done a mighty work in our lives and we do not want that to stop.  Jon uses every opportunity to tell his story to individuals and groups.  Pray that God will use it to expand his kingdom.  Pray that others will be encouraged to tell their story to point others to Christ and his goodness, grace, love, mercy and sacrifice for us.

Philippians 4:4-9

"Rejoice in the Lord always.  I will say it again:  Rejoice!  Let your gentleness be evident to all.  The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus.  Finally brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praiseworthy-think about such things.  Whatever you have learned or received or heard from me, or seen in me-put it into practice.  And the God of peace will be with you."

Now we are headed back to Hilton Head and Jon, Luke and I are heading to Duke University on Sunday to be at the Men's basketball game on Monday night at Cameron Indoor Stadium.  What a special, special moment.  Jon absolutely cannot wait and we are excited to go along for the ride.  I will definitely update the blog with pictures!  So watch the game Monday night at 7PM against Virginia!!!

Luke's day started with a Mickey Mouse pancake breakfast!

And it ended with some yummy birthday cake!

PTL--Great News!

We made it to Indy today safe and sound (Wednesday).  Jon's Chest X-ray was clear and his blood work was fantastic.  Praising God tonight in Indy!  We got to see beautiful snow. I was excited because I never get to see it!

Tomorrow we are on our way back to Atlanta so that Jon can have one more doctors appointment and get his port removed.  YIPEE!

On our way to Indy.

Jon and I are both on the same flight even in seats next to each other headed to his appointments this morning (Wednesday).  We are up in the air so we will make it on time if we are slip sliding away on the Indy roads!

Please pray for us today as Jon has his scan and we have major scanxiety.  We trust God for our future and know He has a great plan!  Greater than anything we could come up with on our own.

Thanks for praying for us to be...

GODSTRONG!!

God answers prayer!

I got on a flight to Indy for Wednesday morning.  I am not on the same flight as Jon but will be there in time for the appointments.

Just wanted to give you the update.  I'll post pictures of the snow!