pray boldly... EVERY day.

Sometimes I find that I pray more and pray harder when I am facing a difficult situation.  When everything is going smoothly and life is good, I continue to pray, but not quite the same way.  Why is that?  I have pondered this often, but I still haven't came up with a good answer.

What I do know is that we have no idea what's in store this afternoon or tomorrow, God does.  Tomorrow might be wonderful.  Tomorrow might be horrific.  Regardless of how tomorrow looks, we should praise God and thank God the same everyday.  Prayer should not be conditional or based on "what's in it for me."  It should be unconditional regardless of the outcome, just like God's love is for us.  We should pray because we want to be lead and we should thank God for the GOOD things we have just as much as we ask him for miracles.

This morning, while I was reading devotions to Josh we stopped.  We prayed that God would speak to us today and lead us any way he chooses.  It was nice.

Okay, let's talk Josh.

In case I have not explained this before, the doctors take four measurements of his blood to chart progress.  Hope you're ready for a science lesson from an amateur.

1. White blood cells - Infection fighters
2. Hemoglobin - Total blood (Includes white, red, & platelets)
3. Platelets - Blood clotters (Stop you from bleeding to death)
4. Neutrophils (ANC) - Strongest & best type of white blood cells

We want all four of these numbers to climb.  Depending on the day they've flexed up and down.  Yesterday, they were mostly up.  Today, white blood overall is down, but the rest of the numbers climbed including the best kind of white blood.  Doctors are confident that the blood cells are engrafting - starting to make a home in his bone marrow and beginning production.

Yesterday, Josh ate better yet.  He got up on his own and sat in the recliner for a couple of hours.  By the end of the day he was ready to try to walk.  Josh walked from his bed to the door of our room and had to sit down.  He said he wasn't ready.  I told him that was okay; we would try to make it a little farther each day. 

After sitting there for awhile, he said he wanted to try again.  Such determination!  I said I would get a wheel chair so he could sit whenever he needed to.  He walked into the hallway and past 2.5 hospital rooms!  It was awesome.  Once he got in the wheel chair, we decided to continue around the floor for a change of scenery.  I need to practice my wheel chairing abilities for sure - we may have ran into a wall or two.  : )

Taking a little snooze in the recliner.

Watching a movie before bed.

Josh has continued to have fevers on and off, which really drain his energy.  He still has some nausea and frequent loose stools.  His original rash is almost gone, but the doctors have noticed some redness to his skin.  This morning they advised us that they would like to test for GVHD.  GVHD stands for Graft versus Host Disease.  They are concerned that the new donor cells may be "attacking" his GI tract (stomach, intestines).  They will double his dose of steroids and start GVHD medication until they get confirmation either way.  They already sent the GI team to meet with us.

Naturally, Josh continues to ask how long it will be until he goes home.  Today the response was a little different.  The doctor said they want to make sure Josh is healthy before they send him home.  Josh was not thrilled, but I agree fully with the doctors.  I would rather them catch things on the front end and address them, versus wishing they would have later.

Kidneys are still doing excellent.  They cancelled dialysis yesterday and today.  This is great news.  Josh just got back from a CAT scan, which they ordered to check his sinuses.  Now, I am going to go try to get him to eat some lunch!

We do not want Josh to have GVHD, but if he does, we will deal with it the same way we have dealt with this whole process - prayers and support!  I'll let you know as soon as we hear about the GVHD and the CAT scan.

Love and hugs!

Heidi

bump, set, spike!

Aaaaaah!!!  What a weekend we have had!  Today, I have lots of great news to share with you.

On Friday afternoon at 1:00pm, we left the ICU and headed back up to our old room!  The CAT scan in the morning showed no issues at all.  It was a wonderful journey back up to Floor 7 and the nurses and cleaning staff were ecstatic to see Josh return!

In the elevator... headed up!

Back to our room!!!  : )

On Friday, Josh's blood counts started to increase.  Saturday, they increased even more!  We were excited to share the news and luckily for us, we had many visitors that day.

Josh's Grandma Mabie and Aunt Linda came first, carrying three of the LARGEST balloons I have ever seen!  They were all decked in Superman, which I thought was quite fitting for the day.  One of my co-workers and her family stopped to visit, followed by two of my sorority sisters, Joshua's best friend and his family, and finally my Mother in Law & Step dad.  They took me out to dinner around 8:30pm and Josh fell asleep the second we left the room!  Wow... that was a long day of chatting!

Jack, Wendy (co-worker), and Ryan

Jimmy (Best Bud), Lisa, and Willow hanging out

Today, Josh's blood counts dropped a little.  The doctors said that a drop is okay and quite common, but they should continue to see an upward trend.  Josh had dialysis on Saturday for three and a half hours, which we were hoping would be the last time.  However, after looking at the numbers today, he will need dialysis again tomorrow morning.  His kidney function is still improving, but not yet 100%.

This afternoon, Josh got up and walked over to the recliner where he spent a couple hours.  He ate more today than he has for the last few days and he managed to keep everything down except breakfast.  Hopefully tomorrow will bring even better eating and maybe even a little exercise to start strengthening his legs.

Best news ever:  The doctors say that if all continues to go well, we might be able to leave the hospital in a week!  Praise, praise, praise the Lord!!!  That is way quicker than we ever expected.

We can not WAIT to get out of here.  I am ready to return to the real world and we are MOST excited to see our dog Boss.  We haven't seen him in over 3 weeks other than pictures sent from my family.  We miss him like crazy!

Over the next week, we will be praying that Josh's blood counts continue to increase to a normal level.  We are praying that Josh does not acquire GVHD, a disease where the new cells start attacking the organs of the body.  And we continue to pray that his kidneys fully recover.

We spent eight days in the ICU last week.  Today, we hear that we might be able to leave in a week.  Can you believe it?!?  Your prayers are working.  Our prayers are working.  God's hands are continuing to heal my husband and it is AMAZING!  He knows Josh's body better than any doctor because He created him.  He knows what Josh needed to get to this point and He knows what Josh needs to get to full recovery.  Please continue to pray with us!

Stand and see great things which the Lord will do before your eyes!  1 Samuel 12:16

blessings from the Lord.

By far, this has been one of the best days we have had here.  I am SO grateful for all of the blessings that God has given us and all of the prayers that have been answered!

Today we learned many wonderful things from Joshua's team of doctors!

- Fever has been normal since 6:00pm on Wednesday
- After re-doing a biopsy of his skin, the rash is not due to graft vs. host disease (a complication of transplant), it was just a result of inflammation and should go away within a few days
- Mouth sores are less prominent
- Josh's kidneys showed signs of recovery, so he was switched to intermittent dialysis instead of continuous
- Oxygen is no longer needed as Josh is able to maintain a good saturation level without assistance
- White blood count has started to increase showing signs of engraftment (the new cells are settling in)

- IV nutrition/food is no longer needed as Josh is eating well

- Another ultrasound of his liver was completed and it was re-confirmed that he does not have VOD

I was filled with joy!  Bursting with Joy!  We made it through the past week of darkness and are beginning to see the light!

Josh getting his ultrasound.

Luckily for us, we got to share the news with several visitors today!  Josh's Dad and step Mom came to visit in the morning, then my Mom showed up this afternoon with a surprise visitor!

Grandma Tadlock came up from Illinois!

Lucky for me, Grandma and Mom decided to treat me to dinner so that I could get out of the hospital and into the sunshine.  We went to an Irish Pub in downtown Ann Arbor and sat outside on the patio.  It was amazing!  I do not think I have eaten that much in one day since I've been here!

When we got back to the hospital, Joshua's Mom had arrived and we walked in the room to another fantastic surprise!!!

Josh was out of bed and in a chair!!!

For the first time in over a week Josh was up, out of bed, and on the computer!  God is good!!!  Furthermore, Josh has been disconnected from several of his annoying lines and wires because they no longer need to monitor him so closely.  He will surely sleep better tonight than he has since he's been in ICU.  There will be much less beeping from all of the machines and wires and the nurse will only come in 4:00am to take vitals!

In the morning, Josh will have a CAT scan at 9:00am to confirm there are no further issues.  He will have a couple hours of dialysis.  Then... we should be headed back up to the 7th floor again!  Good bye ICU!!!

Thank you family and friends for all of your prayers. 

the climb.

I'm up in our "old" room right now.  I am going to sleep here for the first time in awhile.  Joshua's mom is staying with him in ICU tonight, two floors down.  Hopefully I will have a peaceful night of rest.  I will sleep in silence without waking up to beeps, and alerts, and nurses coming in every single hour.  Luckily for Josh, he gets a pretty strong nighttime cocktail before bed - an array of powerful pills to knock him out.

I've spent the past hour listening to voicemails and reading emails.  An hour!  I had no idea how far behind I was!  Hopefully I will be able to catch up soon.  To be honest, I had know idea what day it was today until I asked our nurse!

We have already began to fill our new room with cards, drawings, and inspirational pictures sent by you. Over this past week while I was really struggling, you not only took care of Josh, you took care of me. I think we are brought to tears more by your thoughtfulness than anything else we have experienced here.  Thank you just isn't enough.

Josh's health has gradually improved, but he is not yet well enough to leave ICU.  Although it would be WONDERFUL to have him back up here in a relaxing and peaceful setting... we want to be sure that he is completely stable before we leave the 24/7 monitoring he gets now.  All of your prayers are working!  Keep up the great work!

Doctor's Updates
(This may be ridiculously boring... sorry, it's very late right now!)
Eyes - No issues!  It will just take time for the redness and floating blood to be repaired and absorbed by the body.  Until then, Josh is unable to read due to a black spot in the center of his right eye.  I read him the cards he receives.  He can not use Facebook.  Calling is better than texting, but he is often asleep.
Skin - Biopsy was unclear.  The rash is most likely a drug reaction of some sort.  It has gotten worse since in ICU - dark red splotches everywhere.  All antibiotics have been switched and we hoping to start seeing improvement.  They also started steroids today to help.
Lungs - Josh is able to take his oxygen off for a good part of the day with no problems, but usually needs it while he sleeps.  Lung function is continually improving.  This is no longer an area of concern!
Liver - So far all tests for VOD have been negative and function increased this morning.  Docs will continue to monitor very closely over the next few days.  So far, so good.
Kidneys - Josh was taken off of dialysis today with no success, he was hooked back up tonight so that they can continue to remove waste and toxins from his body.  Docs are hoping to try to switch to dialysis three times per week instead of continuous sometime soon, but there are no guaranties on how fast his kidneys will recover.  He lost almost 30 lbs of excess fluid since we arrived in ICU.  He is no longer a puff-a-lump!
Mind - Fantastic!  No more hallucinations or confusion since Saturday morning.  Thank God!!!  That was by far the scariest part of this journey for me since we arrived. 
Fever - Much better since last night. He maintained a lower fever today, but it is still not normal.
Mouth - Still full of sores that extend down into his throat.  He has "magic mouthwash" for numbing the pain.  Not sure when these will go away - they were a side effect of his aggressive chemo treatment.
Diet - Josh has been given the okay to eat and drink again!  Today he ate fairly decent after not eating food for days.  He is ecstatic to be given back another freedom.
Hair - Mostly gone.  Josh requested that the nurse shave the rest of his head this afternoon so he wouldn't have patches all over.  I videotaped the historic moment.  He still has eyebrows, but not much else.
Muscles - Very weak.  Josh stood up two times today, which was awesome.  He needs lots of assistance, but today was the first time he has been out of bed since last Thursday night.  The first time he stood, he had to sit right back down.  He became very light headed and his heart rate soared.  The second time went much better.  He was really proud!  Physical therapy will start tomorrow to begin strengthening exercises.

EVERYONE that came into our room today said that Josh looked wonderful!  Unanimous decision: We are headed in the right direction!  In addition, Josh's blood counts should start to improve this week as the new cells engraft and start doing there job.  We couldn't be more excited!

I can not wait until Josh is able to walk out of this hospital on his own two feet, knowing that he has his whole life ahead of him.  Can you imagine what that will feel like?!?

I have faith that we will get there to find out.

He who began a good work in you will carry it on to completion until the day of Christ Jesus.  Philippians 1:6

days go by.

The days all run together now.  I sleep when I can, usually for 5 hours at a time - sometimes in the afternoon, sometimes at night.  Luckily, I have had a lot of help since Josh has been in ICU.  My mother in law and step father, father in law and step mother, Josh's grandma, and my mother and sister have all been here in the last few days.

Josh has several complications at this time. 

His kidneys are no longer functioning on their own, so Josh is on continuous dialysis to flush all of the fluid and medication from his body.  He has been on oxygen since Thursday night.  They have been able to reduce the amount of oxygen, but he still needs the help.  He no longer needs the blood pressure medication as he is able to maintain a high enough level on his own, but he still has a consistent fever.

His skin has a rash that has worsened since we've been here.  He has sores throughout his mouth, which are painful and annoying.  His eyes are beyond blood shot due to the pressure that built up from excess fluids.  He is still a little swollen or puffy, but less than he was in the past few days.

He is on IV nutrition (food) as he has been unable to eat.  They will not allow him food at this time because they are worried about his lung function.  He is breathing heavy and fast.  They do not want him to inhale the food or have food in his stomach in case they need to put a breathing tube down his throat.

Josh is not able to get out of bed and has become very weak.  His arms shake when he reaches for a cup of water or tries to push himself up.  He has to be bathed in bed, go to the bathroom in bed, and be rolled from side to side to have his bedding changed.  I have done more than I ever expected I would need to do for him as an adult .

Josh's mental status has normalized. He has been coherent since yesterday morning, which is very comforting for everyone.  They think the hallucinations and confusion were due to a build up of medication in his system while his kidneys were slowing down.

Today, I have met with the doctors from transplant, dermatology, infectious disease, and ICU.  Tomorrow, we will see the ophthalmologist.  Josh is constantly being examined, poked, and prodded.  It is hard for him to get rest and he seems to have increased anxiety here.  They just gave him a combination of drugs to ease his pain and allow him to sleep.  I wish they would just stay out of here and leave him alone for awhile... but that is not reality.

Josh is frustrated.  He is anxious to get out of bed and out of ICU.  My heart breaks for him, but there is nothing we can do right now.  Despite his frustration, he is still positive and continues to treat all of the staff with kindness and a big smile. He has already had visits from the nurses on our old floor and his doctors from the drug trial area. They just wanted to stop by to see Josh and encourage him to keep on pushing.  He has really had an impact on many people here.

This is a hard time.  Harder than I ever imagined.  But we will continue to move forward a day at a time.  I remember what Josh told me before we got down here.  He said, "God only gives this type of situation to the strongest people, the people that can handle it."  Watching Josh endure what he does day in and day out, I truly believe that. 

another turn.

Just got done helping Joshua take a shower.  His hair is all starting to fall out now.  He wanted to feel fresh and clean before he heads to his next challenge.

The doctors decided it would be best to move Josh to ICU so that he can be more closely monitored.  His oxygen level was low and his blood pressure is low.  There is some fluid in his lungs.  He is now on oxygen and the ICU will be able to administer blood pressure meds that are not available on this floor. 

They will hold this room for a few days in hopes that we return.  It will also provide a place for me to sleep as I will not be allowed in the ICU room overnight.  That will be a big struggle for me.

Oh Lord has this been a day.  When I look at Josh, I know that everything will be alright.  Just look at this face...

Fresh and clean, ready to roll!

prepare for glory.

This week has not been easy.  Josh has had a temperature of 103.1 degrees for most of the week.  One of his nurses said that she could fry an egg on his head.  I believe her.  Every time I touch his head or his feet, I feel so awful.  He is just radiating heat... like a furnace.

He is currently on several antibiotics and an anti fungal medicine in case there is some sort of bacteria that they hasn't shown up yet.  So far, all tests have been negative.  He takes Tylenol every four hours.  He even decided to get rid of the mohawk so that his head could breath.  Yesterday evening we put ice packs all around his body just to try to cool him off.  Still no change.

Hospital haircut by Mom!

Then right back to sleep...

We had several visitors and lots of encouragement this week.  My three best friends each made a trip out to the hospital. One came each day.  Joshua's aunt Jenny and cousin Nick came to visit yesterday.  Joshua's father and step mother came out this morning.  Both my Grandma and Oma (great grandma) from Illinois called Josh and I to check in and visit.  My mother-in-law continues to visit each day!

Having fun with decorations on Tuesday!  Josh directed

Kelly and I while as we boosted each other up to the ceiling!

Talking to Grandma Tadlock.

Visit from my Father in Law and Step Mom this morning!

This morning Joshua's temperature was at 105.0.  His face, lips, and eyes are swollen.  He has been talking in his dreams and is a little dilutional... mostly attributed to the high fever.  For a short while he came down to 100.0 degrees, but is now up to 103.0 again.  His body seems to like it there.  The doctors said he should only have a 3-4 more bad days... I sure hope so.  I had to sit down twice today when the doctors and nurses were in the room.  I felt like I was going to faint waiting to hear what they had to say.  When it is just Josh and I, I feel much better.
 
Earlier he told me he was traveling in his dreams.  He went to his friend Jimmie's house.  He said it was fun, then asked me if I wanted to go with.  I said, "absolutely."  Then he said, he'd have to practice.  He wasn't sure if he could do two people yet.  I said, "Josh, wherever you go, I will always be with you."
 
I have been so strong this whole time, but today I broke down.  It is getting really hard to watch my husband deteriorate each day.  I leave the hospital room to call my parents and cry.  I have to be strong and happy in here, for his sake.
 
So far, Josh has eaten a Boost pudding cup. For the first time, I fed him. That way he could keep his arms under the sheets. He was shaking. The nurse said that I will have to help him walk and stand from now on due to his low blood pressure and dizziness.
 
Luckily despite Josh feeling like garbage, he has been able to comfort me.  He has been joking around with the nurses, the doctors, and I... sometimes with his eyes closed because they are heavy.  He asked me to come cuddle with him, even though he was burning hot.  And when the physical therapist came and woke him up to have him ride on a stationary bike, Josh told him "No problem!"  I had to smile. 
 
"Prepare for glory!" was a phrase used in the movie 300 by the Spartan King and leader of their army. He screamed the phrase as the Spartan army of three hundred men set out to conquer armies of millions. The Spartans were brave, fearless, and outstanding warriors.  That is my husband.  This week Josh has has been a mighty Spartan.  I am so proud.

roller coaster.

Yesterday was by far the worst day we have had so far. 

Josh's temperature dropped first thing in the morning.  Then, it bolted up to 102.9, then down to 102.7, then up to 103.1.  Needless to say, I was a little on edge all day long.  Josh barely ate, he did not do get out of bed other than to use the restroom, and he didn't have energy to take a shower.  He slept all day.  He woke up for about 10 minutes at a time, but even then, I could tell that he was struggling to keep his eyes open.  I have never seen my high energy, "balls to the wall" husband in this state. 

One of our nurses sat down with me in the evening... I think she could see that I starting to spin out of control.  I asked her, "Is this normal?" referring to the 103.1 temperature.  She told me that she had seen higher on occasion, but we needed to get it down as soon as possible.

I put cold washcloths on Josh's forehead and feet, then brushed water through his hair.  He was on fire and I was feeling helpless.  Josh woke up for a second and I asked if I could read him today's devotional out of his new book.  He agreed.  I flipped to June 14th and the title was, "The Cure for Disappointment."  I thought... Perfect!!! 

We need to hear that God is still in control.  We need to hear that it's not over until he says so.  We need to hear that life's mishaps and tragedies are not a reason to bail out.  They are simply a reason to sit tight... When the train goes through a tunnel and the world gets dark, do you jump out?  Of course not.  You sit still and trust the engineer to get you through... Go back and read the story of God.  Read it again and again.  Be reminded that you aren't the first person to weep.  And you aren't the first person to be helped.  -Grace for the Moment, Max Lucado

Okay, I thought, I will sit tight and wait.  FYI... that is not an easy task.  Josh's doctors upped his dose of Tylenol and I waited some more.  I tried to sleep, but that did not work well either.  I kept walking over and to feel Josh's forehead or just to sit on the edge of his bed.  By 3:00am, his temp was down to 100.3 and I finally got some rest.  This morning, it was at 99.0 - Praise the Lord!

Luckily, my day was broken up yesterday by a visit from a couple close friends as well as my mother-in-law.  Josh got a new game, some new clothes, and homemade chicken noodle soup!  We also received the quilt we were promised by the sweet old lady that I met in the waiting room.  It almost took my breath away.

This will definitely brighten up our room!

The detail - so awesome!

Other than Josh's fever dropping to nearly normal, this morning has had a wonderful start.  Josh was up and perky for a couple hours (he is napping now).  He ate a good breakfast.  And he got a delivery of five cards!  I don't know why, but he is like a kid at Christmas when they show up!  The cards came from all over... and they were all very special.  We ran out of poster space and have moved onto our door.

Thank you!!!  

Once again, we are overwhelmed by your generosity and care.  The phone calls, the texts, the cards, the visits, the gifts, the food...  Wow!!  God is certainly giving us our daily bread - that is, what we need to get through each day.  This is going to be a great one!

hello moon.

It is the middle of the night now.  I'm WIDE awake.

I was woke up about an hour ago by a couple of nurses in our room.  They were followed by a radiology tech pushing her machine through our door.  After I sat up and put my glasses on, I whispered "Josh, what is happening???"  Josh had a minor fever - 100.3 degrees.

A fever is very common after a transplant.  It is typically a sign that the new cells are doing their job and fighting off Josh's old cells that still remain.  Luckily, we had been told this information multiple times in the past couple days.

Protocol is to immediately start antibiotics, send multiple blood samples to the lab for testing, and take a chest x-ray.  Done, done, and done.  (I think that I am forgetting something, but I was somewhat in shock watching our nurse shove multiple tubes of blood into bags!)  All of the above is done to confirm that Josh has no "bugs" in his system, and to confirm it is just normal signs of the new cells working.  The antibiotics are started immediately just in case.

The nurse advised that looking at his records, he had a gradual upward trend in his temp all day, being yesterday now.  We caught the fever at the perfect time.

Josh is currently sleeping.  Now I will try to do the same.

sleeping beauty.

As you know, Josh's transplant day went very smoothly.  My mother ended up staying over night in case we needed her.  Not one of us slept soundly, likely due to the excitement and/or the nurses slamming doors all night long.  I suppose no one is happy to be working on a Friday night. 

Josh's mother and stepfather came to see us early the next morning.  They found Josh and I curled up on his bed trying to get some sleep.  Josh was very tired all day long, so we let him nap while they took me to lunch at Angelo's.  After eating that meal, I am glad we had a bit of hike back to the hospital!

We brought back a protein-packed

omelet for Josh!

We got back and Josh attempted to eat what he could.  But the side effects of chemo and radiation were clearly starting to kick in.  Josh's entire digestion system was not treating him well.  He had an upset stomach all day long and upset bowels all night.  He woke up once per hour until morning... not by choice.  Luckily for Josh, there was an upside to this yucky day.  Our favorite nurse was back to work.  She bought a few fun surprises for Josh too!

Today is Day +2.  We had several visitors - Grandma Mabie, Aunt Linda, my sister Jana, her fiance Jeff.  Joshua managed to stay awake for about an hour to chat with everyone, then he fell right back to sleep. Needless to say, I was happy to have company!  My mother-in-law showed up early afternoon (she is a regular) and Josh was still sleeping.  He slept ALL day!

Aunt Linda & Grandma Mabie

Josh opening up his gift, daily devotions.

Josh and Jeff

The Fab Four!

Occasionally we HAD to wake him up, then it was right back to bed.  Waking him is NOT an easy task!  I found that a nice, cool washcloth ran over his face and neck tends to perk him up.  Then I have to "gently" coax him into completing his daily checklist.. some days I have to be "not so gentle."  Joshua's daily requirements involve bathing, mouth care, exercise, and eating/drinking.  Some of these are very difficult tasks when you feel like crap and just want to sleep.

Josh's blood counts are almost bottomed out. That means his immune system is very susceptible to bacteria of any kind. We will have to be extra pre-cautious over the next couple weeks. Then slowly, the new stems cells will start producing new healthy blood cells and Josh will start to build his immune system back up.

Per the doctor's orders, we have started logging his daily calorie and protein intake.  The longer he can eat well, the better his recovery process will go.  If he is unable to keep up with his daily minimums, they will have to feed him through his IV.

My mother-in-law left around 6pm tonight.  Just prior to that I got Josh up and around.  He walked his mom out to go home, did his mouth care regimen, and took a shower.  Can you guess what he is doing now???  I will let him get a little more rest tonight, then I will try to get some more food into him before midnight.  We have a ways to go on our calorie/protein log...

With God's help, we will find the strength to keep on pushing!

a brand new day!

Two nights ago, Josh looked at me and said that he just wanted to know what God's will was for him.  I said we will never know what God's plan is for our futures, we can only trust that whatever his will is, it is what's best.  In the meantime, God wills us to continue to pray, build our relationships with Him, and share his love with others.

Today, I found myself asking the same question Josh did.  I wanted to know his will for my husband.  Knowing my question would go unanswered, I prayed and I thanked God for THIS day.  I prayed that I could let go of my worries and give them to Him.  I prayed that I would have the strength that Josh needed and the perfect words to say.  Today is a very big day!

It is Day 0 - transplant day.  The day started off a beautiful day of celebration.  Celebration of new start, a new life, and new possibilities!  Josh was showered with many great cards, gifts, and balloons... kind of like a big kid birthday party.  One of the nurses even sang the Happy Birthday song!

A new photo collage of all of his family &

friends... and of course Boss!

Bright new balloons!

 
Joshua's mother stayed until late morning.  Then my mom came in early afternoon.  We got up and took a nice stroll outside in the sunshine.  Then Josh taught my mother all about his Wild West video game!  It was a riot.

I have been quite anxious for the past two hours, almost nauseous, just sitting and waiting for the new stem cells to arrive.  I paced and paced and paced some more.  They arrived early, so we were able to begin transplant at 8:20pm.  The cells arrived in a Coleman cooler!  Naturally, I took several pictures as this was a big moment in our lives!  The entire process was completed in 40 minutes.  The doctors got the cells in a quickly as Josh could handle it.  Josh is tough so it was lightning speed!  No troubles so far.  All of his vitals look great.

Just prior to transplant!

Our new stem cells arrived from an

unknown international location!

60 million stem cells!!! Can you believe it??

Josh zoned out listening to music on his laptop.

Feeling good...

Halfway done!

Me, Josh, and my Mom : )

It is now one hour past transplant time and Josh is feeling great.  Vitals are still good and he is awake and lively.  We are requesting prayers for comfort and continued healing as the next two weeks will be the hardest part of the process for Josh.  We want to thank ALL of you for your support, your prayers, your thoughts, and your kind words.  Much of Joshua's success is attributed to your love and concern.  God Bless You! 

 

lights. camera. action!

Whoever said that we would get bored sitting over here was quite wrong!!!  It has been an action packed week with tests, procedures, and visitors.  We have had several camera worthy moments...

Joshua's lovely grandma came to visit yesterday afternoon.  She brought Josh some fun balloons, including one decked in Spongebob, and some other fun goodies.  After Josh's morning raditation, he took a very long nap, then he was up and lively all afternoon.  We shared many great stories from his family's past including several cute ones about Josh as a little one.

My gracious mother-in-law came over after work to relieve me last night, so that I could get some rest.... I slept for over  11 hours!  It was amazing.  And much needed. 

When I got here this morning, Joshua was still napping.  After we poked and prodded for awhile, Josh agreed that the three of us should get out and about for awhile.  The radiation makes him very sleepy.  We went down to the cafe and got our lunch to go, then ventured out into the beautiful sunshine.  I nearly died of shock when Josh and his mom met a new friend!!!

 

It is literally eating out of his hand!!!

We got in trouble when we told the nurse.  Apparently chipmunks are

 not very sanitary.  No more chipmunks in our near future.  : (

We got back inside and walked Josh down for his afternoon session of radiation.  While I was waiting, I met a very sweet lady whose husband was battling three types of cancer.  We got to talking about her love for quilting and how she makes quilts for veterans and children in the hospital.  We exchanged numbers and she said she would make a quilt to send up to Josh and I while we are here.  It was really nice to talk to someone else going through a similar situation.

Josh has been gaining weight gradually and the doctors advised us to continue to feed him as much as he can stomach to fill him with energy.  They are super happy that we have been getting Josh out of bed and out to walk - he will need as much strength as he can get for the next few weeks.  They encouraged us to continue to stay positive and were glad to see we are surrounded with positive people.  Josh received his first three cards in the mail today.  He made it to the second one before I saw a little tear drop down his face.  Those three cards just made his day!

Josh took a shower and shaved his face for what may be the last time.  I took a video because he will want to remember the last mohawk he will ever have...  :)  No signs of hair loss yet!  I guess it can take up to three weeks.  I have already offered to paint on eyebrows and decorate his head in cheetah print, but I don't think he is game.

After the shower, I told Josh he was scheduled for some very important vitals...

I don't think they were anticipating such a tall kid!

Tomorrow is his last day of radiation.  We were told that the transplant will occur sometime Friday afternoon/evening.  We are getting close to "Day 0" and it will be a day of celebration and thanks!

Thank you for your continued thoughts and prayers.  It means the world to us.

achievement.

a-chieve-ment
something accomplished, especially by superior ability, special effort, great courage; a great or heroic deed

My baby sister graduates from high school today.  She spent the past twelve years working towards her high school diploma and she made it!  She will be attending Western Michigan University in the fall, joining Darcy (#3 of the Duitsman girls), to obtain her college degree.  Johannah, being the youngest, has always been full of spunk, outgoing, and sometimes off the wall...  she has a heart of GOLD and is full of determination.  I am so proud of her and who she is.  Josh and I will not be able to attend the ceremony, but she will be on our minds all day.

Speaking of achievements, Joshua has been a super trooper!  He has been nausea free for the past day and a half and is eating normally again.  Normal for Josh means a full breakfast, plus part of mine!  His weight has remained stable and his doctors, nurses, and dietitians are very pleased!  Have I mentioned that these people are angels without wings?!?!  We are so blessed.

Josh had his first round of radiation this morning and will have another round this afternoon.  According to him, there was no pain involved, he just listened to music for the 20 minute session.  Now he is sleeping again.  This morning he said that he slept good last night, but it is just not like home.  I know what he means.  Tonight Josh's mom is coming to stay overnight with him and I will head to a nearby sorority sister's house for a good nights rest.  Hopefully, this will help to keep my energy up so that I can continue to take good care of Josh.  It will be difficult leaving him, even though it is just to sleep, but I know it is what's best for both of us. 

As I think about the achievements of my sister and my husband today, I feel both motivated and inspired.  I can do all things through Christ who strengthens me. Philippians 4:13

love: the best medicine of all time

This morning started out great.  The sun was shining!  Josh was up and alert.  And he had NO signs of nausea!  We had an amazing nurse all day who shared our love of dogs.  Her husband's name is Josh and he happens to enjoy four-wheeling, Mustangs, and outdoorsy things.  Naturally, we shared lots of great stories, pictures, and laughs.  It was a blast!  We also had an unexpected visitor stop by, who I gladly welcomed in to say hi...

Josh's loving mother showed up to visit for the day.  She brought us inspirational cards, posters, and some cute pirate window stick-ems to decorate Josh's window.  Now we fit right in with the rest of the cool kids on this floor!  Mid-afternoon, Josh got VERY sleepy.  He slept and slept and slept and SLEPT.  We just woke him up to try to get him to eat a little something.  Next, we are going to try to get him out of bed to go for a walk.  Exercise will be key over the next few months.

Josh did not style his new mohawk today

in case you are wondering.... too funny!

My dad and grandpa also stopped by this afternoon.  It was so great to see them.  Two more wonderful hugs!  I think they got a kick out of walking through the children's hospital... or maybe they were just blinded by all of the colors and decorations.  They delivered a marvelous memory foam bed to go over the "couch" that I sleep on.  By couch I mean a hard, vinyl covered bench with mediocre stuffing.  Needless to say, I can not wait to use the new topper!  Actually, I have been sitting on it all day!

We got several calls and messages from loved ones, both family and friends.  I can not say enough about the healing power of good old LOVE.  It is inspirational and encouraging.  I think a life without love would be a life with nothing at all.

I got a particularly special message today from a very close loved one.  Due to my sister Darcy's undying curiosity (aka need to snoop through Grandpa's stuff), she found a book that my Grandmother filled out about me when I was a child.  It had the typical questions, like "How did you feel when you heard  you were going to be a grandmother?" and so on.  But it had one question that I think was supposed to discovered today.  Today, because this is the first time I looked at Josh and saw how this was already taking a toll on him.  Today, because we found out how the next few days of radiation would make him feel even worse.  Today, because I realized that this is going to be a little more than just a challenge.

The question:  What do you wish for your granddaughter in the future?
The answer:  My wish for your future is that you will always be happy.  Life will not always be with out adversity, but how you handle it will make the difference.  If you maintain a closeness with our creator Jesus Christ, he will guide you.  Remember what I always told you when you were tiny... Don't say "I can't do something," always say "I will try," then do your best.

My grandma passed away several years ago from lymphoma, but she had the perfect words for me when I needed them most.  Written with LOVE...

i need serenity.

After a nice afternoon visitng with both of our parents and my sister, chemo has taken its toll on my husband.  Apparently, the 2-3 day delay in side effects was not the case for Josh.  He has been really sick for the past hour and a half.  I feel such a sense of helplessness, but am doing all that I can to provide him with comfort and support.  Meanwhile, Josh continues to trudge on. 

The nurses have given him several additional medications to help curb the nausea.  He is taking a bath now.  It is quite funny to see a 6'4" man in a child size tub!!!  I had to take a picture.  Too funny!  Hopefully, when he gets out  he will be able to relax for the rest of the night...  It is funny how reality never sinks in until it is right in the your face.

God grant me the serenity
to accept the things that I cannot;
courage to change the things I can;
and wisdom to know the differerence.

Living one day at a time;
Enjoying one moment at a time;
Accepting the hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

our new home.

Well, we are both here and all settled in.  Josh is staying in the University of Michigan's Motts Children's Hospital. I guess they had a feeling he is still a kid at heart! He is on the 7th floor and in room 7678. The staff on this floor has already been amazing. We get a thorough explanation of every medication and every procedure.

We are still working on making our room a home.   We each have a "closet" with a month's worth of clothes crammed in to fit.  Lucky for us, the hospital has a washer and dryer right here on this floor. There are game rooms, family areas, and a nutrition room with some snacks and drinks.  The freezer at the end is full of  ICE CREAM!  It's like someone knew I was coming!

Josh has an entertainment center set up with everything he can not live without.  He brought our flat screen TV, his XBOX 360, and his laptop.  We have DVD's, video games, books, magazines, and mind teasers.  I brought pictures of family and friends to decorate, but I have a ways to go.  My sister Jana made some posters will all of the inspirational notes and cards we have received.  At the top it says, "ALL TOGETHER: RELENTLESS".  The posters are hanging right in front of Joshua's bed.

Josh received his first ever treatment of chemotherapy this morning at 10:00am.  He will receive another round tomorrow, followed by 3 days of radiation. They call today "Day -5," which makes transplant day, "Day 0."  That is Friday, June 11th.

The doctor's say that Josh's side effects from the chemotherapy may take a couple days to show up, or they may show up right away.  They gave him quite a few preventative medications to help curb the side effects.  So far, so good.  He is up,  moving around... and of course, charming ALL of the nurses!

I am going to continue to use this blog for updates.  I quickly realized how much time I will have on my hands here.... so check back frequently!

Mailing address:
F7689 CS Mott Children's Hospital
1500 E Medical Center Drive
Ann Arbor, MI 48109-0246

Phone number to Room 7678:
734-763-7432

Important Notes:
Josh can not have any flowers, fresh or dried in the room.  He can not have fresh fruits and veggies, fountain soda pop, raw/ un-roasted nuts or anything unpasteurized.  He will be on a very strict, high protein diet for the next several months.  Also, we have enough candy to literally last us a year!

If Josh is feeling up to visitors, you are welcome to visit.  Please call ahead to check in or shoot either of us a quick email.  If you or anyone you have been in contact with has been sick, please keep in touch via phone or internet.

the time has come.

I thought that I would need this blog as an outlet for all of my worries, concerns, and joys.  It turns out, however, that I am surrounded by sooooo many wonderful people that I rarely think about sitting down to vent to the computer.  There are pros and cons to this situation... several of the people who care about Josh and I are not getting all of the updates!  I have decided to start a CaringBridge Page where Josh, his mother, my mother, and I can all add updates so that everyone will be connected and automatically updated.  Once I set it up, I will let you know.

Josh left today. He will not be back home for 3 months or longer.  The first 4-6 weeks he will be in the Mott's Childrens Hospital at U of M.  The first week he will undergo major chemotherapy and radiation to kill what is left of his blood cells.  This will allow our donor's blood to take charge when it enters Josh's body.  Then we wait for his body to stabilize and his immune system to strengthen.

God has continued to answer prayers over the past months. 

A little over a month ago, we found out that Josh's leukemia advanced to the next level.  It is called the Blast Crisis phase.  Blast cells formed which are more agressive and very "sticky."  This allows them to potentially spread the cancer to other parts of his body.  Joshua went to the hospital where they cleaned out as many of those cells as they could to get him stable.  Then he was put on a clinical / trial drug till we were able to move to transplant.

When Josh was orginally tested 75% of his bone marrow cells were blast cells.  This past Thursday, the pathologist told us that 0% of his bone marrow cells were blasts!!!  The clinical drug put Josh into genetic remission!  Finally!  This will allow for a much less risky bone marrow transplant.  We are hoping that the drug company will allow Josh to go back on the drug after transplant to ensure the leukemia does not come back.  We are praying for a FULL recovery.

Our life over the last few weeks was truly amazing. 

We had family gathering on both Josh's side and mine to pray together and eat together.  My parents' church invited us to take part in an entire church prayer for Josh.  It was beautiful, moving, and very comforting.  To support Josh and the Be The Match Bone Marrow Registry, my parents ran a long, muddy, and grueling 15k.  My mom told Josh that she said his name about a million times to get her to the finish line.  She said if he can go through this, I can at least endure this run.  We were very proud and honored.  There was a speaker after the event and Josh and I got to meet another donor and recipient and hear their success story.  Just awesome!

Because Josh was doing so well, the doctors allowed him to partake in more normal activity the last couple of weeks.  He rode his quad, we went to several cook-outs and bonfires, and we took Boss kayaking with some great friends.  This gave his spirit the uplift that it needed from being trapped inside for so long.

Boss in the water on our kayaking adventure.

He is our pride and JOY!

Last night we sent Josh off in style.  We had over a dozen of our closest friends meet us at the Rogue River Tavern in downtown Rockford.  There were many toasts, hugs, and words of encouragement.  And we got a group picture of the whole gang where ALL of the boys actually behaved!

I'm heading down to the hospital tomorrow morning and I will be staying there at Josh's side, until he can come home healthy and strong. 

Thank you for continued love and prayers.

Have a blessed day!