Thursday, July 22, 2010

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!!!


  1. I can't even imagine how hard this is on both of you. I'm glad that God has given Josh someone as great as you, and is giving you the strength to put on a brave face and hold his hand through everything. I'm praying for you both.

  2. You two continue to amaze after day you are given another battle and you just blast through it. I am inspired by your love and devotion to one another and am very proud to call you my best friends. Much love, hugs, kisses and prayers, Beck

  3. Both of you are inspiring - to be able to leap over all these hurdles and still think positively is amazing. God is there with you always, you're never alone. Keep that positive mind set, we'll keep praying, and God will continue blessing. Love you lots!

  4. Heidi you do not know me but I work for Young Insurance in Rockford and we represent Cincinnati Insurance Company so I work with your Dad. I just want you to know that you and Josh are in my daily prayers. You guys seem like very strong people. You really have a way of writing and through that show such a strong faith. You hang in there. Take Care. Sincerely,Ramona Hinton

  5. You are amazing! Your faith is inspiring! You are loved!

  6. I pray for Josh and you during this difficult time. I pray that God heals Josh and continues to give you both the strength and faith you need.