HOME SWEET HOME!

We are back home!  We drove home immediately after Jon's treatment on Tuesday.  He did well until about 30 minutes before we got to our house.  He started shaking and shivering.  By the time we got home he was in sweat pants, sweatshirt, covered in a blanket with his fever rising even after taking advil.  Thank goodness I can text his PA.  She said it was most likely a reaction to the bleomycin, the chemo drug he received Tuesday.  She said it can cause chills and fever.  The ordeal lasted about 5 hours and then by 1030PM the fever was gone and Jon was eating spaghetti and meatballs.  It was a crazy experience.  Again, so glad I could reach the PA or we would probably would have headed to the ER.

Since Tuesday night Jon has been feeling good.  He is still weak and feels fatigue.  But he is eating normal and able to be up and participating in our crazy lives!  His goal is to be back to work Friday.

Please pray that Jon will gain some weight back before he starts his high dose in less than 2 weeks.  Pray also God will protect him from germs as he works and that he will continue to gain strength.

Again, thanks for joining us on the journey!

We are GODSTRONG!

This isn't the greatest picture but it shows all the kids--including my nieces--praying for Jon.  We lay hands on him every night and pray for him.  It is a precious time!

Jon is better!

His fever has been normal since about 2pm today.  He is feeling a little better and has a tiny bit more energy.  He was also able to eat today!  And we both took naps today!!

We really appreciate your prayers and your encouragement!

Reality has set in

I am not going to sugarcoat this.  Life is tough.  These past few days have been tough physically and emotionally.   Reality of our lives for the next 3 months has definitely set in as Jon has faced obstacles with this last round of chemo.  We are still in Atlanta.

This new chemo drug that he got last week can cause severe constipation.  Well, it did!  By Thursday night he was in so much pain that we ended up taking him to the ER.  When we got there we realized he had a low grade fever.  Not good for a chemo patient that has almost no white counts.  The ER helped him with his constipation problem and sent him home.  When I talked to the PA Friday morning she wanted him to come in and get IV antibiotics and fluids.  He will also be on oral antibiotics for 7 days and will also get shots of neupogen every day to get his white counts back up.

In the meantime, yesterday I was trying to get housing situated.  God totally opened a door for us!  The housing situation has been difficult to say the least.  We need a large home, furnished, near the hospital, with a short lease.  O and did I mention it has to be pet free because of Luke's allergies.  We quickly realized all these things weren't going to happen.  So we were trying to figure out the best option and had some possibilities through friends of friends.  But yesterday I made a phone call to a company that I found out about through the IU Cancer Center that rents out furnished apartments.  At the beginning Jon and I were opposed to apartment living with small kids because it would not give them enough space, no yard, etc.  Now we are all about it!  It is very difficult to find a 3 bedroom apartment downtown and impossible to find a 4 bedroom.  So we are going to rent 2 furnished 2-bedroom/2 bath apartments.  They are in the same building a floor apart.  The one that Luke will stay in has been remodeled, new carpet, etc.  The family living there now does not have a pet and the girl in charge of renting these assured me she would have it cleaned well!  It is less than a mile from the hospital.  Kids will stay in one apartment and Jon in the other!  This week has been tough.  Jon LOVES seeing the kids and they always bring a smile to his face.  But he HATES hearing them fight, yell, whine, cry and scream.  You probably get the picture.  This will give the kids an opportunity to ride the elevator and go see their daddy in a good mood and return to their own apartment to whine, scream and cry!  We quickly realized this week that the hospital will be a place we will frequent often even in the middle of the night so being right next to it will be a HUGE blessing.  We can make apartment living work for 2-3 months!

We are also going to take advantage of "city" life.  We live in a small town so we do not have opportunities that a big city offers (but we do have the beach, golf and pool year round!!).  I have enrolled the kids in kindermusik, gymboree sports class, we will do CBS, the zoo is within walking distance, the children's museum is the biggest in the world, etc.  The kids will have an activity everyday to get them out and about.

Jon will start out outpatient.  Which means, he will go to the hospital every morning around 8am.  He will be there until 3 or 4 getting chemo, fluids, meds, transfusions, etc.  He will return to the apartment for dinner and to sleep.  If he has any "issues" they will admit him to the hospital.  I will be with him most days.  Another blessing is that we have a full time live in nanny from Hilton Head that is going with us.  She will be with the kids everyday along with either my mother, Jon's parents or Jon's sister.  They are all rotating.  And then on the days I am with the kids a family member will be with Jon.  It should be interesting to say the least but we will make it work and help Jon through this time.

Please pray for Jon.  He is very sleep deprived.  He is very weak.  He has lost 10 lbs since he started this round almost 2 weeks ago.   He has been nauseated today.  He needs nutrients.  His body has virtually no immune system.  His fever has gone up to 102 today.  Currently as I am typing this we have it down to normal!  Praise God.  Please pray it will stay 100 or below.  Otherwise he will be in the ER again.  Pray that along with the antibiotics, his body will be able to fight this infection.  We are finding out quickly this is very different than 1st line chemotherapy.  When he went through this the first time, he gained 10 lbs, his counts never got as low as this time,  his doctor told him he was text book perfect. This is extremely difficult for Jon mentally and physically.  Jon is not a lay around person.  He has tons of energy and is on the move all the time.  It is very difficult mentally to try and fight through every day.  He is miserable!  Physically he already feels his body being depleted.  He wants so badly to be at home but the doctors have suggested we stay here because we need to be near the hospital.  He will get another dose of chemotherapy on Tuesday and we will figure out if we can go home.  Lots to pray about.  Thanks for being prayer warriors on our behalf.

I will leave you with some pictures.

When I got home from the hospital this morning at 1am, this is how i found Luke sleeping, hugging his little Clifford.  It made me smile!  I miss my children intensely right now.  I absolutely know I am doing the right thing by taking care of Jon, but I miss being with them during the day and even sometimes at night when I am not around.  

SSSHHH!!!  Don't tell Jon I posted this picture.  This was us at the Piedmont ER.  They had pretty purple masks.  

This was us at Gwinnett Medical where we originally went.  When they were checking Jon in and checked his vitals, we realized he had a fever.  I kinda freaked out because I knew they would admit him, starting crying and explaining to the nurse his situation.  I told him his doctor was at Piedmont.  He looked at Jon and said do you feel like driving 40 minutes to Piedmont?  Jon told him he did (LIAR, haha) and the nurse told us we needed to go to Piedmont where his doctor was.  I signed papers refusing service and we left!  It was definitely the right decision.  At the moment though Jon was not real thrilled!

This was a rainbow we saw driving in to Piedmont one day.  I could literally see the whole rainbow.  It was gorgeous.  I was reminded of God's promises.  He stays true to His Word always!  He keeps his promises.  During this journey, I love to be reminded of God's promises!

Stuck in Hotlanta

Jon got worse throughout the night and this morning.  By the time we got to the doctor's office for his bleomycin this morning he couldn't even lift his head off the table.  He broke out in a rash overnight and was feeling lightheaded, dizzy, weak and extreme fatigue.  The PA told us absolutely not to go home until he was feeling "good."  She also put an 86 on the P90X!  For those of you who do not know my husband well, he tends to take things to the extreme!:o)  So she told him going on walks at the most is the only approved exercise while he is recovering from this round.  The doctor told us this is a VERY tough regimen of chemo and in fact is not used often anymore.  They also told us his white counts are SUPER low, like almost 0 so we have to watch him closely for any signs of infection.  This is the lowest they have ever been since he started chemo back in February. 

PLEASE pray for his body to recover quickly.  He is extremely frustrated and discouraged.  This is also making him become very fearful of the future of high dose chemo.  For me, it is so difficult to watch someone not have any interest in "life."  The only thing I see that he has "interest" in is his kids. Pray that mentally he will stay strong and that God will give him LIFE and LIGHT each day.  This is also confirmation for both of us that we are sticking together during this time and that taking our kids to Indianapolis is definitely the right decision.  They bring much happiness to Jon and his face lights up when they walk in and talk with him, dance around, make a joke, or hug him.  We are both so thankful for them and their sweet, sweet spirits.  They are truly gifts from God.

Thanks for lifting Jon's name up to the Father!!

Some sweet moments

This weekend and today was rough for Jon.  We ended up staying in Atlanta and Jon went in to the infusion room today to get extra fluids.  He is just feeling pretty bad in general.  It's been tough for him for sure.  The first time Jon went through this a few months ago, he had a total of 20 days of chemo.  This time (high dose) he will receive 5 times the amount of chemo in just 6 days.  It just makes us even more anxious as we think about how Jon's body will respond to this amount of chemo in such a short time.  Please pray his body will rebound from the standard dose round so that he will feel good on September 3rd going into the high dose round.  Also please pray that he will begin feeling good quickly so that he can go back to work before we move to Indianapolis.  He just wants to be "normal" and go to work and do what he loves to do, teach those precious children.  Jon will get a shot of bleomycin (one of his chemo drugs) tomorrow and some fluids.  After we have Luke's allergy appointment we will head back to HHI.  Pray the trip will be smooth and the kids will not be too whiny!

I have some cute pictures of the kids I wanted to share.  When I watch them with Jon it brings me joy and is a reminder that they will never be the same after going through this experience.  Our family is "sticking together like glue" to help get Jon better.  The kids follow Jon up to his room when he gets home from chemo.  They love when he walks downstairs to say hello.  And they come snuggle with him in bed.  They love helping serve him and get things for him.  It is so cute and I know they are learning life lessons that they otherwise wouldn't be learning.  None of us will be the same after this, and I know that we will be a stronger, closer family through serving each other and putting others needs above our own.

Here is Emma Kate snuggling with her daddy.  They have missed him so much this week.  They call his port his "doodles" so everyday when he comes home they ask if he got his doodles taken out.  They know that the port is a sign that daddy is sick and has to go to the doctor all the time.  We have been extremely open with our kids about what Jon is going through.  They see all of our emotions about the situation.  We do not try and hide anything, although obviously we tell them what is age appropriate.  But unfortunately Luke over hears a lot more than he probably should.

The kids like bath time so much more with Mikayla!!  She puts LOTS of bubbles in there and it's a great hour long activity!!

Take a look at Luke's black eye!  He had a collision with Emma Kate.  But don't worry, she told us she was just fine an not "crying"  But Emma Kate wasn't fine the next day when she got stung 4 times by a hornet on the hand!  I felt SOO bad for her.  She cried and cried!

Yes this is Jon THIS WEEK.  He has done P90X everyday except Sunday. And he looks dang good!  He said he is in the best shape of his life!  Below is Jon's first day of chemo.  Doesn't he look handsome?

We stopped at my grandfather's house on the way to Atlanta.  He gave the kids a tractor ride and the LOVED it.  They were so excited to see great-grandaddy!

Jon's chemo week

PRAISE GOD!

So far this week, Jon has responded very well to the chemo.  He was a little more tired today and food isn't sounding quite as good, but for the most part this week has been great!  He has been working out every night and for the most part eating normal!  He has one more day and then gets the weekend and Monday to recover.   He will get one drug on Tuesday.  We are so hopeful this week will end up good!  We also know how to manage the side effects better because of having gone through this already.  We know what meds work for his body and know to get extra fluids on Wednesday, Thursday and Friday!

We found out that Jon will begin his high dose treatment on Tuesday, September 3rd.  We will move the weekend of August 31st.  This gives us one more week than we thought to prepare for the big move which is a good thing.  Jon will feel much better going into this high dose round of chemo.  Overwhelmed is not the word we feel.  How do you even begin to pack for 3 months for 3 small kids and cram it all into a car?  We are trying to take one day at a time.  Sometimes the details can just get overwhelming!  We must put one foot in front of the other and keep moving!

Today Luke was diagnosed with asthma.  He has a severe allergy to animals which we obviously already knew because of the recent ER visit.  The appointment today was just too much for both of us to take in especially on top of what we are already dealing with.  I sat and listened to the doctor and nurse educate us on these allergies and asthma.  I listened to them explaining all of the medicines the doctor was prescribing for Luke and trying to get it all straight in my head.  Instead my head was spinning with information.  This is on top of all the meds I have to keep straight for Jon.  I honestly walked away for there and wanted to go crawl in a hole.  I know so much about testicular cancer, but i know nothing about asthma except it is scary to see your 4 year old struggle with.  Please, please pray for us as we try and find housing in Indianapolis that is a pet-free home. God can provide!

There are so many things to be thankful for!  There have already been 2 churches come forward through people we know in Indianapolis that want to minister to us while we are there.  What a blessing!  I have already found a music and sports class the kids can go to once a week.  What a blessing!  We have already been invited to a MOPS program in Indianapolis.  What a blessing!  We have had a couple of men come forward and say they want to do our yard and take care of our home while we are gone from Bluffton.  What a blessing!  A neighbor who is willing to help us with bills while we are gone.  What a blessing!  God is putting the pieces together for us and it's a blessing to see things come together.  

Long overdue update.

First of all, let me say I'm sorry I haven't updated.  We have been completely crazy busy and we had to let all appropriate people know what was going on before I unleashed the information on the blog.

We have sought an opinion at Indiana University Cancer Center.  We also have gone back to Sloan-Kettering in NYC to meet with an oncologist there.  This is the conclusion of both appointments.

Both doctors at both institutions have concurred that Jon has to have high dose chemo with stem cell transplant at one of these hospitals under the care of one of these doctors.  We were relieved to find out that both doctors were in agreement with the treatment plan.  We have both wrestled and struggled this week with where Jon should be treated.  It has been such a hard, hard decision.  Honestly, for the first time in our cancer journey, we did not have a clear direction whatsoever.  We did not have one red flag with either doctor and no pull toward one or the other.   We felt like both doctors and institutions would do a great job.  We felt that each doctor brought different strengths to the table.   It was extremely frustrating for us.  For those of you who know me, I always have a very strong opinion about most things.  It is rare for me to say "I have no idea."  But this was one of the times I HAD NO IDEA.  But ultimately that was a good thing because I want Jon to feel good about which place to be treated and ultimately he had to make that decision alone.  Both institutions and doctors are fabulous and we know that Jon will get top notch treatment at either.

So...Jon has chosen to be treated at Indiana University under Dr. Einhorn.  He will start a standard dose chemo treatment in Atlanta this Monday (8-5-13).  He will get treatments Monday through Friday.  He will then have to go back the following 2 Tuesdays for an injection of bleomycin.  He will begin high dose in Indianapolis on August 26th.  They will begin by retrieving immature stem cells from Jon's body.  They will freeze them and then administer the high dose chemo.  They will then inject his body with the stem cells to "rescue" his immune system.  There will be 2 rounds of high dose chemo.  This is a very intense process.  Jon needs lots of prayers.  He will probably be hospitalized during a lot of the process. He will get to come "home" for a few days each round.

Our family will be moving to Indianapolis sometime the weekend of the 24th.  We will be there until mid November if everything stays on schedule.  My mission has been to do whatever I could that was humanly possible to give Jon a chance at being cured.  I have pushed and pushed to get him the best doctors at the best institutions.  I can truly do no more.  I will go and take care of him and the kids with all my might.  And I must leave the rest to the Almighty Healer.

I am a control freak.  When we found out in December that Jon had cancer in his lungs, my goal was for our family to be together during his treatments.  My other goal was to always make sure I was with Jon during each and every treatment.  And we made sure that happened.  We would drag our children to each round of chemo in Atlanta.  I would sit with Jon during his 5 hour treatments and double and triple check every single drug they were putting into his body.  We would then drag the kids back home during Jon's 2 weeks off.  I was so thankful we were all together and I could take care of my husband AND my children.  This time will be much different.  I am still going to do whatever it takes to keep our family together.  But my time will be extremely divided.  I will be giving up much control of both my children and Jon's healthcare.  Obviously a lesson God must want to teach me.  The kids will not see Jon very much at all because he will be in the hospital.  I will go back and forth between Jon and the kids.  It is a little overwhelming to think about all that will have to come together for this to run smoothly but I'm confident God is going to provide.

Praise:

**God provided the best doctors in the world in this field  for Jon to be seen by.
**That this treatment is meant for a "cure for life".  Not to prolong his life or give him "a few more       years"  We are thankful that even at this stage of the cancer, testicular cancer is very curable.
**Jon's administrators have been more than wonderful and supportive.  It gives me chills to think about.
**Community Bible Study (CBS) in Indianapolis has already accepted me and the kids to come beginning in September.  This is a very popular program and the Children's portion fills up quickly.  The coordinator wrote me back quickly and said she talked to the leadership team and they are going to "make it happen."
**Advancements in stem cell transplants have improved so much thus allowing high dose chemo for Jon to be an option.

Prayer:
**Jon will be getting new drugs this week that his body hasn't seen.  Please pray he will not have an adverse reaction to these drugs.
**That we will get housing and childcare quickly.
**For Jon and I as we tell the kids that their daddy will get more chemo and that we will be moving.
**Our children as they adjust to their new life in Indianapolis.
**For Jon to have strength and courage as he endures this process.

Jon and I have struggled with this news of high dose with stem cell transplant since we found out it was a possibility back in early June.  We knew it was a real possibility, but was hoping for the surgery.  We have to trust that God is in control and He knows what the best plan for Jon is.  To be completely honest, this whole process is so scary.  The first time we went through the chemo, we felt so hopeful, and less fearful.  After chemo doesn't "work" the first time, it is much more easy to start letting fear creep in.  We really feel like Satan has been trying to attack us.  It is extremely difficult to not let your mind wander and go to places it shouldn't.  It is so easy to read all the verses and know what the Bible says but to live it out is a struggle for us right now.  We have moments of being conquerers and we have moments we completely fail.  Please pray for us as we try to live out what God has called for us.  Pray that our home will be full of love, and not of stress.  Pray that we will be full of hope, and not of fear.    Pray that we will have strength, and not be weak.  Pray that we will rests in God's promises and not believe Satan's lies.

We are making memories as a family lately.  Jon and I figured out that in the last month we have been to Dallas, Phoenix, NYC 2 times, Atlanta, Indianapolis, Gatlinburg, TN, and Orlando, FL was our latest.  Here are some pictures of our happy trip.  Jon's last HURRAH!!!