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!

 

It's a roller coaster!

This is very difficult to write.  And I cannot go into all the details because its quite complicated.  And I hesitate to even write this because its ever changing.  But this is where we are now.

We found out in our appointment at Sloan that the remaining places on Jon's lungs unfortunately are growing.  One of his tumor markers was also elevated.  So Jon had more blood work this week and another CT scan.  The blood work however came back normal.  The doctor tells us he was very surprised and that this is good news!  Although we are devastated these places are growing, we are very thankful we got in with Sloan as quickly as we did because through Dr. Bosl ordering more CT's is how this new news was discovered.  Bottom line is unless God chooses to heal these residual masses, he is faced with surgery to remove places on his lungs or more chemo.  Yes we are devastated, scared, anxious, stressed, overwhelmed BUT we must trust in God's promises and believe that He is going to use this for good.  We are trying to stay positive and dwell on the blessings.

So it looks like now the next step will be a biopsy to figure out what type of cancer is growing so they know whether to do surgery or more chemo.  The biopsy will take place around mid-July.  We aren't sure which one to pray for so pray that God's will be done.  Pray for wisdom for these doctors because when I say this is rare:  I promise it is rare!! Only 2-5% of people with this cancer have masses leftover after chemo.  Rare for it to skip the abdomen and go straight to the lungs.  I tell you this because although we are at a great institution that sees this more often they still don't see it that much.  So it's a good reminder to not put your trust in medicine and doctors but in Jesus, the only true healer!

I share all this with you so that you can pray specifically with us.  We are praying for Jon's body to be healed.

On a positive note, we are on vaca in Dallas visiting Jon's sister.  We will then fly to Phoenix on Monday to visit Jon's grandma, aunt, uncle and cousins.  We are going to enjoy and relax!  Although draggin 3 kids 2 and 4 on the plane was far from relaxing.  LOL!!

Ill add pictures later. I can't figure it out!

Sloan-Kettering visit

We met with Dr. Bosl yesterday.  He is a very impressive man.  He was kind, caring and gentle.  He has been in practice 36 years.  He is very experienced and knowledgeable in his field in particular testicular cancer.  He was extremely thorough with everything.  The appointment took 2 hrs!

Because Jon's case is extremely rare Dr. Bosl needs to compile some additional information.  There will be a couple of more tests over the next few weeks to determine what our next step will be.

We are praying for complete healing in Jon's body.  We don't know if that will come through medicine or God performing a miracle but please join us in praying for complete healing.  Jon is being prayed over by our elders and pastoral team this weekend.

Thank you from the bottom of our hearts for your prayer support!!

Heading to Memorial Sloan-Kettering

It has been quite a stressful, busy day but God paved the way and all additional things the doctor at Sloan needed will be in his hands tomorrow.  Please pray for clarity for us and wisdom for the doctor as he reviews Jon's stuff and decides what would be the best plan of action.  We will spend the day for "fun" in NYC tomorrow and celebrate our anniversary that is next week...8 years!  We got tickets to David Letterman!  Pray that we will be able to relax and enjoy the day as this appointment weighs heavily on our minds.  Please also pray for the kids and their safety.  This is the first time I've been this far away from them.  Weird feeling.  Thanks for your prayers!

This is the verse someone gave me recently:

Psalm 34:4

"I sought the Lord, and He answered me;  He delivered me from all my fears."

Prayer request

We are heading to Atlanta right now (Monday night). The doctor at Sloan Kettering needs some additional tests so today sent us in major scramble mode to try to get scheduled for Tuesday at Emory.  Then trying to get a family of 5 out the door in a matter of 3 hours was quite interesting but luckily Jon's mom was available to help!

The major prayer request is for the biopsy slides that the doctor has to receive from Emory before he will see Jon.  Please pray that these will be expedited quickly and that Dr. Bosl will receive them by Wednesday if its God's will we see him this week.  Otherwise we will have to postpone our trip until beginning of July.  God knew all this beforehand and He has a plan.  We have to trust Him even if this trip gets cancelled (kinda like the surgery in January that got postponed). God knew and had a reason and plan!  And he does with this weeks appointment.  Thanks!