our new home - part two.

What a week!  What a wonderful week we have had.

This past Saturday afternoon, I took a quick trip home.  I met my sister for her first wedding dress fitting, then headed up to our first fundraiser for a couple hours.  The fundraiser was hosted by my very best friends and their families - it was amazing.  I was able to see so many people who I have not seen since we left for Ann Arbor and ate delicious food at the same time.  I drove about 5 hours in one day!  The time seemed to fly by as most of my ride home was spent thanking the Lord for my friends and family.  I have the very BEST!

the master chef

me with all of the hosts

I got back to the hospital and found that Josh had waited up for me.  His mom had just left.  I told him about all of the people who came and how perfect the day turned out to be.  I am sure he wished he could have been there.  I certainly wished I could have stayed longer.  But he had a boyish smile as I told him about all of the great conversations I had and about how many people miss him like crazy.

Over the weekend, Josh's numbers and condition were very stable even after a reduction of steroids.  Although he still has a virus, the doctors advised that they will be able to monitor it on a weekly basis, and it didn't require hospitalization at this point.  We will not know for about two weeks how the treatment is working anyway.  Because they were so pleased with Josh's status...

THEY SENT US HOME!!! Wooo Hooo!!!!

Our new home is not exactly "our" home, it is Josh's step father and mothers home in Portage, MI (near Kalamazoo).  We will be living here until September when Josh reaches Day +100.  The hospital requires that Josh lives within an hour of their facility during this time as it is the most risky stage.  They allowed us to move a little over an hour so that we could avoid renting an apartment.  Thank God!  We are very comfy here, especially because we have a WONDERFUL ROOMMATE!

on the way home from U of M

reunited with BOSS! our favorite roommate!

Josh's mom has quit her job so that she can take over the daytime care of Joshua.  He will continue to need 24/7 monitoring until Day +100.  This will allow me to return to work on Monday.  I will be commuting from Portage to Grand Rapids and will be taking care of Josh on the evenings and weekends.  Because Josh came home on IV medication, we have spent this week training with our in home nurses, so that we are prepared to work on our own starting tomorrow.  We have learned how to hook up his IV tubing, administer the meds, clean the lines, and disconnect them.  We are also in charge of all of his oral medications now.  He has over 15!  Some are given multiple times a day, and all are on a tight schedule.  What a headache!!!  Proudly, I can say his Mom and I are now pros!

In order for Josh to move back to our house in September, I have to do LOTS of preparations.  Our house has to be sterilized, free from all dirt, dust, etc.  We'll have our carpets, upholstery, and vents cleaned, and we can have no open construction at all.  That means there are a lot of projects that I will need to finish in the next couple months.

I went home last night to get work clothes and spent the entire evening with my parents and sister Johannah working on our house.  We are completely tearing out our bathroom, which Josh started prior to transplant.  What a job!  Plaster and slats are now my worst enemy!!!  I did, however, love watching my mom and sister in demo mode - they are really bad ass!  Who would have imagined that two small women had so much power!  I was a little intimidated and very excited!  : )

 

Josh is LOVING every moment at home.  He is starting to move a little more each day... Boss doesn't give him much choice!  He is eating well and sleeping well and has already gained some weight.  He still has 30+ pounds to go, which I do not see taking long with all of the yummy food here.  He is even thinking about starting some college courses soon, likely a medical program.  He will not be able to work for at least a year, so this is the perfect time for education!  I can tell you one thing, we are both cherishing each day and really living life to the fullest!

Joshua's birthday is on Monday.  He will be 30.  Last week I asked him what he wanted for his birthday.  He said that all he wanted was to be home.  And here we are...

rocky road.

This journey has been more difficult than I ever imagined.  I keep thinking back to Day -6, our first day here, when Josh was determined to get out of here by Day +17.  Now we are at Day +41 and are still not 100% sure when we will be discharged.

When I last posted, I let you know that Josh's skin graph versus host disease (GVHD) was improving.  It had responded very well to the initial treatments.  We were hoping to go home this past weekend or early this week and couldn't be more excited!  However, on Friday afternoon, we heard more bad news.

Although Josh's GVHD on his skin was healing, the doctors now found it in his digestive tract. A much more serious complication.  It can eat up the digestive tract allowing the organs and surrounding organs to "corrode" away.  Josh had to stop eating and drinking immediately.  All of his medicines were switched from pills back to IV and he was only allowed ice chips.  The doctors looked worried.  The nurses, our friends, looked very worried.  Josh and I felt very unsettled... my stomach was twisting and my mind was spinning out of control.

I called my boss first.  I know that may seem weird, but I immediately felt guilty about being away from work even longer, especially during our busy season.  Every time I felt confident about getting out of here, something else came up.  Aaaaaaaaaaaah!!!!  Luckily for me, I am blessed to have an amazing boss.  He was truly able to comfort me and settle me down when I needed it both.  When I hung up, I was able to focus my full attention back on my husband, where it needed to be.

Josh was trying to be so strong.  But I could see right through his tough exterior.  When everyone left the room, I told him it was okay to be upset.  And it wasn't fair.  And that I realize he has the toughest road of all of us.  I squeezed him and he broke down in my arms.  Now, I had to put on my tough girl face.  I told him that the only reason that I was teary, was because it hurt me to watch him so upset, but I knew everything would be alright.

I let everything soak in for awhile.  I just didn't understand.  I left in my car and started driving.  I was hysterical.  I was crying and screaming and asking God why this was happening???  I said, "God... everyone has been praying and praying and praying.  We have been praying.  You said our prayers would not go void.  I need you to show me that things will be okay!"  At the same time, all of these terrible thoughts are running through my head, so I was trying to shoo the devil out of my mind, again screaming like a maniac.  People driving next to me must have seriously thought I was losing my mind.

I called Josh.  No answer.  I continued to drive.  I called Josh again.  He finally answered.  The doctors had come back in. The biopsy results showed that the GVHD in his digestive tract was only in the lower part of his colon.  It was not as extensive as they had thought.  They were hoping that the treatments they had already started for his skin GVHD would soon start helping the GVHD in the colon!  I looked up at the blue sky and the clouds and I said "THANK YOU GOD!!!" as I started crying happy tears.

On Monday, Josh was allowed to start drinking clear liquids.  He did well with that, so on Tuesday they allowed him to start back on a very bland diet.  (Broth, rice, unsalted potatoes, jello)  Again, he did well,  yesterday they boosted his diet a little.  He has a ways to go before he can eat "normally" but his signs of GVHD have disappeared, so the doctors assume that all is well again!

So how does GVHD work?
The T-cells (the general) tell the B-cells (the army) to attack.  They started attacking Josh's skin and colon as if they were diseases.  This caused the skin and colon to bleed, swell, and become irritated.

How did they fix it?

The "rabbit antibody" and Josh's "tanning bed procedure" work to turn off the T-cells (the generals).  Therefore, once the B-cells (the army) return from their battle, there is no one commanding them to continue.  So they just started wandering along with no real rhyme or reason.  In addition, Josh was given heavy steroids, which work to suppress, or shut down, the entire immune system.

Resting after a procedure... they make him very sleepy.

Today, Josh's GVHD is doing great.  On Tuesday, the doctors decided to start weening Josh off of steroids, which are very hard on the body.  Quite a few of Josh's medications have been switched back to oral.  He is still getting IV nutrition until he can build back up to a normal diet (for the 2nd time).

Because the immune system has been weakened and the T-cells have been depleted, Josh's body has been quite susceptible to illness.  However, he has been on constant antibiotics to fight bacteria, and constant anti fungal meds to fight fungus.  There are not very many antiviral medicines as viruses are mostly kept under control by the T-cells (generals).

This leads me to our new complication.  As of today, we found out that Josh is testing positive for a virus, EBV.  Most adults have the virus but it is kept dormant by the immune system.  It is most commonly associated with Mono.  Because Josh's immune system was down for so long, the virus in his body had a chance to wake up.  The virus "moves in" to the B-cells (the army) and starts growing inside and expanding them.

Now, we're a little stuck between a rock and a hard place.  If we suddenly allow Josh's T-cells (generals) to come back full force, his GVHD could flare up again.  If we keep Josh's T-cells blocked for too long, then the virus will multiply out of control and start swelling up his lymph nodes or other organs and can even cause other types of cancer.

So, what is the plan?
For those of you who are still with me...  The doctors will gradually speed up the process of weening Josh off of steroids.  Instead of every seven days, they will start to reduce them every four to five days.  At the same time, the doctors will give Josh another antibody (not sure if it comes from an animal, but I will find out).  This antibody will shut down the B-cells (the army, which are becoming the homes for the virus).  They are hoping that within a few weeks, the virus will have started to subside.

Again, not what we want to hear.  But, we are happy they found this now so that they can start treatment right away.  In addition, we are VERY thankful that there is a treatment plan at all.  We ask for your continued prayers and support for Joshua during this process.  This will be another difficult step.

We have come SO far and we are not giving up yet!  Although the road has been rocky, we have a powerful God on our side to help us get by.

Josh enjoying a fruit Popsicle now that he can eat!!!

hope turned reality.

Yesterday morning, the doctors came in to take a look at Josh and go over his status.  I had stayed up way too late the night earlier, unable to sleep (as you can see from my 3am blog post).  I was just waking up and a little out of it.  When they left the room, I asked Josh, "Did they just say 4.2 or was I hearing things?"  He said "Yeah."

I jumped out of my couch/bed and ran over to the our daily chart.

2 days ago:
Overall White Blood Count - 3.5
"Fighter" White Blood Count - 0.9

Yesterday:
Overall White Blood Count - 4.5
"Fighter" White Blood Count - 4.2!!!!  It more than quadrupled!

Josh's new cells had officially engrafted in his body and were producing well!  His white blood count was now back in the normal range of 4-11.  AND his "Fighter" white blood cells were high enough for his body to fight bacteria!  Can this be right?!?!  Both of us were a little skeptical considering he has been going up by 0.1 for the past several days.  We called the nurse.

When she got to the room, she confirmed the numbers.  I almost died of a heart attack!  Oh!  Did I mention that the doctors also saw the first signs of rash improvement???

HELLO ANSWERED PRAYERS!!!  This was less than twelve hours after I decided to turn around my way of thinking.  Less than 12 hours after writing my blog.  And less than twelve hours after having a nice long "chat" with God about my prior week of doubt.  SO awesome!

Immediately, I talked to Josh about my late night blog and the devotion I read.  I said that God does not bless those who doubt Him.  He does not bless those who lack confidence in His power.  I asked Josh if he thought that we had lived the past week in doubt and disappointment.  He agreed we had and agreed to make today a better day.

We agreed to ALWAYS find something to be thankful for, even on the worst days.  We agreed to ALWAYS remember that God knows what is best even if we can't see it yet.

Today, we woke up to the doctors again.  We wondered what the numbers would do after such a drastic jump.  Well, let me tell you what they did.  They went up even more!!!  Needless to say, I have been smiling all day.  Do you know how much I love to smile?!

The rash looked a little better to them.  I think it looks the same, but at least it does not itch as much now.  They're primary concern today was Josh's exercise and muscle loss.  He is on a high dose of steroids for the rash, which basically eats up muscle.  He has continued to eat as much protein as possible, but exercise is extremely important to stop muscle loss.

Due to all of his new treatments, he did not get out of bed at all two days ago.  He walked twice yesterday around the floor yesterday, but even then he got light headed quickly and needed to sit down.  Our doctor told him that he needs to challenge himself as much as possible.  If his rash gets better, but he isn't able to walk steady, he would have to stay longer.  Yuck! Yuck! Yuck!!!

Loss of muscle

He has lost over 30 pounds since we arrived

Gentleman rev your engine!!!  It is time to get moving!  I had Josh do some stretching exercises to get the blood flowing to his muscles - hoping that this would cause less of a shock when he stands up.  We walked a lap around the floor.  Josh even told me to walk faster!  I've never heard that until today.  When we got back, I challenged him to do some calf exercises (presses).  He was able to do 15.  Tomorrow, we'll try to beat that.  Even better, Josh walked all the way to another building in the hospital and back this afternoon with no help.  Hallelujah!

With God's help, I know he can do it.  In fact, I am so hopeful and confident, that I even started packing up some of our belongings.

Getting ready to blow this popsicle stand!

hope.

My soul, wait only upon God and silently submit to Him; for my hope and expectations are from Him. -Psalms 62:5

Over the past week, I have been stuck in a bit of a rut.  We have now been in the hospital for 5+ weeks.  Five weeks of summer no less!  We are definitely antsy.  We've been told we would get to leave multiple times, then something always comes up to stop our plan.

Our plan....

Maybe that's the problem with my thinking over the past week.  I have forgotten that we do not get to make the plans.  Instead of focusing on what WE think should happen, we need to trust that God knows.  He decides what will happen because he can see the whole picture.  Maybe I have been questioning things too much this past week.  I have certainly been asking:  Why?  When?  How?  I lived this week in doubt and disappointment.  I started to lack confidence.  God would certainly dislike seeing those behaviors - almost a slap in the face.

This is the time to REALLY have faith, REALLY trust Him, and REALLY reach out for His hand.  I came upon the above scripture last night, when I turned to God for help.  It cleared things right up for me.  Josh and I need to wait for God, continue to have hope, and know that God has the power to do anything!  At this time next year, this whole process will be SO worth it.

My goal for this coming week is to pump Josh full of HOPE and continue to hope myself!  I will focus on how far we have come thanks to the Lord.  And remember to wait patiently.

Since Thursday, Josh's "Fighter white blood cells" have gone from the magic number 0.5 (kills bacteria) to 0.9!!  We have had multiple days of repeat improvement!  This is much different than the prior week where we went up a teeny bit, then down to zero, and so on for seven days straight.  The higher number, the stronger the immune system!  Woo Hoo!

In other fantastic news, Josh's liver has improved for the past two days in a row.  Hopefully tomorrow will make the 3rd day of improvement!

Our only hold up now seems to be his stubborn rash!  On Friday, he got his first treatment.  They basically sucked all of his white blood cells out, found the GVHD cells that are attacking his skin, medicated them, put them in a mini tanning bed to activate, then returned them to Josh's body.  The entire process is way to much for me to grasp, but the bottom line is... the treatments should eventually turn the crazy cells to relaxed cells so they stop attacking his skin.  And therefore are stopped from attacking other organs.

Josh's fancy procedure.

The "tanning bed" waiting for white blood cells to finish separating.

Docs came in this morning and saw no signs of rash improvement for the third day.  Therefore, they decided to administer a new medication to see if it will assist.  The medication adds some risk for infection (viral or fungus), but the GVHD already increases his risk, so it's basically a wash.  The most important thing for you to know is that the drug is some sort of an antibody derived from a rabbit!  I have been waiting all day to see if Josh starts to crave carrots or has an extra hop in his step!  So far, just a fever of 101 and a very tired boy.

GVHD rash on arms/stomach

 

His toes are almost purple looking - I put cream on him 2x daily

Thursday night, we had some U of M athletes stop by to visit with Josh.  Friday, Josh picked up his video game controller for the first time in four weeks!  (This was a bittersweet moment for me, as I am not a fan of video games.)  Saturday, I snuck him out of the hospital for a quick little car ride around U of M.  I felt like a criminal, but it was totally necessary for his sanity AND we did not get caught!  Do not tell our doctors!!!

U of M athletes

Our signed hats!

Reuniting with the XBOX

Today, Josh's dad, my mom, and my youngest two sisters came to visit.  My mom arrived with a huge gift basket from some of her dearest friends full of all kinds of wonderful goodies to get us through this next week!  What a perfect surprise!

I would like to thank YOU again for everything.  We would never be able to get through this experience without your continuous love and encouragement!

Have a wonderful week!  God Bless!

the last mile.

Did you miss me???  I just realized it's been a whole week!  Shame on me... so much to share.

This weekend while you were boating, barbecuing, and enjoying the sunshine, I took a little vacation of my own!  On Thursday night, my mother-in-law arrived to spend the night with Josh so that I could go to a nearby slumber party with my sorority sisters.  I slept like a rock in the queen bed I had all to myself.  When I woke up, I talked to my Mom on the phone who made me promise to sit in the sun for at least an hour before heading back to the hospital.  Oddly enough, this was a tough promise to fill as I am SO used to being next to Josh at all times.  I followed my mother's orders and spent a few hours sipping on Arnold Palmers and playing Phase 10 (a card game).  I even got a little color!  I really needed that... thanks Mom!

In the sun with Jackie!

On my way back to the hospital, I kept thinking about how wonderful it would be to go home.  To have all the sun I want.  Then I realized that Josh has never had a break.  He has not had a night off.  He has not had a drive in the sunshine.  He has not been out of the confines of the hospital for four+ weeks now.  Wow, my heart just broke for him.  I decided that we needed a nice weekend to ourselves.  We needed a date or multiple dates!  We told company to stay away on Friday, Saturday, or Sunday!  It was wonderful!  We watched movies, went on walks, and Josh finally made it outside in the courtyard again!

Our first trip back outside!

Admiring the scenery.

Overall, this past week has reminded me of the last mile before the finish line.  You're tired, exhausted, full of anticipation, and maybe even a little frustrated... but the end is near.  The clapping and the cheering of the crowds are exactly what you need to keep going - to push through to the end.

From last Tuesday to today, Josh's blood counts have bounced around.  The most important cells, his "ninja fighting" white blood cells, were taking their sweet time.  The doctors decided to double his dose of cell boosting medicine to kick them into gear.  They have gone from 0.1 to 0.4 in the past week.  0.5 is the amount needed to fight bacteria, a very important milestone (1.0 fights viruses and fungus).  We are moving in the right direction.

Another top story: I have been a "nurse in training" this past week!  The cell-boosting medication they doubled just happens to come in the form of a shot.  Josh also requires insulin shots now due to higher blood sugar (a side effect of some of his medications).  Although I still freak out like a baby when I get a shot, I am surprisingly great at poking my husband!  I have also been cleaning out Josh's lines/port which I swore I would never do when we first arrived here.

Earlier tonight: Our nurse left me alone with Josh and a needle!

This weekend, the doctors told us that they would like to wean Josh off of any supplementary nutrition.  This meant that Josh would have to more than double his calorie intake in a matter of days.  It was NOT very fun.  He had little appetite, a hard time swallowing due to constant "cotton" mouth, and an upset stomach as it  was not used to processing normal amounts of food anymore.  He was put on a very limited diet of bland food which made it even harder to find things that sounded good.  But he met their goal and is eating completely on his own now.  Tonight he had a burger and fries!!  What a difference a few days has made!

Josh went from walking a room length, to a hall length, to a lap around the floor.  All of his walking he did with the assistance of a wheel chair.  He would lean on the back for extra support, then sit down when tired so I could push him back to our room.  Now he is walking much longer distances without leaning on the wheel chair!  It took a TON of coaxing, prodding, and begging but it all paid off.  I got off the elevator yesterday and saw Josh walking towards me by his own choice!  I almost died of shock, but instead I gave him a HUGE hug.

Finally, this week Josh's kidneys went back to normal again.  No further dialysis is needed, so the docs were able to remove his dialysis port.  This left Josh far more comfortable!

Josh's dialysis port (white tube at top)

Nurse cleaning the port for the last time before surgery!

To summarize... these are our blessings this week:

-Josh's ANC (super fighters) went from 0.1 to 0.4

-Josh is eating a normal amount of calories on a normal diet

-Josh has made major strides in walking and exercise

-Kidneys are totally in the clear

I wish I could end the blog here, but unfortunately there is more to this week than just good news.  Remember the race you're running??  Now you're getting closer and closer to the finish line, but all of a sudden you get a retched cramp in your leg.  You're not sure you can keep going.

After being told for the past week that we were very likely headed home this weekend, we found out today that Joshua's skin tested positive for GVHD (graft versus host disease).  Josh's new cells are more or less attacking his skin, causing it to welt, itch, and peel.  The GVHD is currently at a stage 2 out of 4.  They boosted Josh's steroids today to help, but they will be doing a series of procedures to try to separate and clean the GVHD "attacking" cells from the friendly cells. The main objective is to prevent the GVHD from getting into the liver or digestive system, which can cause major complications and risk.  Both will be monitored closely.  The liver numbers have gradually gotten worse over the past week, with a slightly better number today.  Digestive track seems okay.

Josh is obviously bummed - he wants out so bad.  He is becoming a little less bubbly, a little less talkative, and often prefers to have the lights off in our room.  Luckily he has plenty of loved ones to boost his spirits high and kick him in the butt when needed.  I saw a musician walking down the hall today and I asked her to stop by.  She played her guitar and sang a little Johnny Cash!  Grandma Mabie, Mom, Josh, and I all sang along.  He had a huge smile on his face!  Therefore, everyone had smiles on their faces!

the uplifting guitar

Josh's lesson on the healing qualities of music!

This is yet another challenge for us to conquer.  More time here, more time out of work, more time away from our dog.  Please continue to pray with us.  We pray that God will heal Joshua and send him home at the right time.  We pray that Josh will continue to have strength and positivity to push through to the finish line.