Sunday, November 6, 2011

life is good.

Hello friends!  And hello to anyone I haven't yet met!  It was actually the latter that inspired me to get back to my blog today.  Two strangers contacted me regarding this blog and our situation, and for good reason wanted to hear an update.  That is the least I can do after all of the support this blog has brought Josh and I.  Drum roll please.... I have all GOOD NEWS!!!

I want to start off by saying that tomorrow, November 7th, is our TWO YEAR wedding anniversary!  There were many moments since our marriage when I didn't know if we would make it to this point -- and here we are!  That alone is proof that things can always get better and miracles really can happen!

Ready to hear all about my husband?!?  I hope you have some time, because I am going to rewind back to last year and bring you up to speed.

It was this time last year that we were just starting to get settled back in to our own home.  It was a challenge for us to adjust since we had been relying so heavily on Josh's mother for help.  Slowly, but surely, we figured things out.  To this day, my mother-in-law and grandmother-in-law both help tremendously with getting Josh to all of his U of M appointments.

When we first arrived home, Josh still needed to go to the U of M weekly for check-ups and blood work.  Luckily for us, this past June, one of the local cancer centers began performing ECP.  Josh can now have his four treatments a month done here, versus in Ann Arbor.  ECP, you may recall, is the "tanning bed" procedure.  It is a process that pulls his blood out, treats it by calming it down, then returns it in a less hostile state.  This helps keep everything in balance, so that his new cells keep from attacking his skin and other organs.  We hope that they will be able to ween him off of these procedures eventually.  Each procedure takes 4+ hours.

On top of ECP, a large component of control comes from steroids.  Josh was taking 84mg when he left the hospital.  As of this week he is down to 0mg!  We are hoping that all remains stable, as the long term effects of steroids are harmful to bones, muscles, and joints.

Because they have been able to successfully lower Josh's steroid intake, he was able to be put back on his chemo-like, anti-leukemia medication, Sprycel.  This is one of the medications that Josh took prior to transplant, in attempt to put his CML into remission.  Taking this medicine for the first two years after transplant decreases the chance of the cancer returning.

The entire past year has not been all rainbows and butterflies... we have definitely had some hurdles and some scares.  However, despite any bumps in the road, we made it to the most memorable part of this journey so far... Josh's 1 year anniversary, or "re-birthday" as we call it!  And we had a GRAND celebration... actually TWO celebrations!!! 

WE MADE IT!  We were the 50% that made it!  Praise our Lord, our Savior!!!

Here are some picture highlights of our last year:

At our final fundraiser - the Duitsman Golf Outing! (OCTOBER)

Christmas card picture -- that's one happy family! (DECEMBER)

Happy holidays!

Winter walk in the woods. (JANUARY)

Winter Beer Fest... our third year in a row.  (FEBRUARY)

My 27th birthday! (MARCH)

Celebrating with my hubby! 

Josh became a Godfather! (MAY)

I surprised Josh with a trip to NYC for his
one year transplant anniversary! (JUNE/JULY)

Out to dinner before seeing Wicked on Broadway!

Metropolitan Museum of Art

China town!

Back at our Annual Cabin Trip! (AUGUST)
We missed last year because we were in the hospital...

Josh tending the fire... he loves fires.

Weekend in Milwaukee!

Milwaukee's Irish Fest

Leukemia & Lymphoma Society's Light the Night (SEPTEMBER)
Josh with his Grandma, Mom, and Aunt Linda!

Josh & I just prior to the SURVIVOR celebration!

Getting ready to start the walk around downtown Grand Rapids.

Saline, MI at a sorority sister's wedding! (OCTOBER)

Frisbee with Boss! (TODAY!)

Daddy is a good trainer!  :)

So, what are the next steps for us??  Our primary goal right now is to continue to work on Josh's mental and physical health.  He is still not back to work due to physical restraints, as well as his lengthy blood treatments.  Being at home so much gets him down at times.  He is now trying to get some side jobs in the neighborhood, possibly removing leaves or snow blowing driveways.  He wants to get a few jobs so he can gradually build up to working again.

I will attempt to keep you posted quicker than another year!  Thank you again for all of your continued concern, support, and prayers.  And to those who have found my blog because you are in a similar situation, I pray that you have family, friends, and faith to get your through each day.  Take things one day at a time.  One day turns to two, then sooner or later you will be a year out wondering where the time went.

Gods blessings, Heidi

Friday, September 17, 2010

life since 7 Mott.

Ironically, this is the title of the blog I've been meaning to write for a couple weeks now.  Yesterday, one of my friends asked me if our journey ended when we left the hospital.  I had to laugh.  Our journey has not ended, it has just changed.  From what I hear, many of you have been asking what's new.  Well, today I have ample time to fill you in.

Since we left the hospital at the end of July, things changed quite a bit, but they are still far from "normal".  As you know, Josh, Boss, and I moved into my in-laws home in Portage, MI (near Kalamazoo).  We are still living there and will be until we get the "ok" to go home.  This usually happens sometime around 100 days.  I remember thinking that 100 days would take FOREVER.  Now it is just a couple days away.  100 days will mark the biggest landmark after a bone marrow transplant.  How far we have come.

Our first weekend home, Josh celebrated his 30th birthday.  Although he could not go out to celebrate like he normally would, he had a wonderful time... thanks to a surprise party by his loving family.

Card created by Josh's brother Aaron, with signatures from all of you!

The fam sporting their "Team Josh" shirts featuring John Deere!

Josh with his Bald Support Group!
Keith, Dominic, Chris, Josh, Aaron, and Roy

Just prior to Josh's birthday, we had our 2nd fundraiser, a spaghetti dinner and silent auction organized by Joshua's grandma.  Although Josh was unable to attend, his mom and I took a video of the entire event including shout outs from several of his friends and family.  I was flabbergasted to see the turn out and was so excited to tell Josh.  It really hit home for him when he received a special birthday card from Grandma announcing the results.  Josh's eyes filled with tears to hear the news and tears continued to flow while he thanked his family for organizing the event.  It was a very special moment for all.

With love from all of our family and friends... WE THANK YOU.

Card that accompanied a donation from Josh's father's entire workplace.

We are hoping to get home soon.  However, we have to finish some work to do before we can move back.  Josh can not move in until we finish all of our prior construction projects.  The biggest of these is our bathroom.  Thanks to the help of our family and wonderful friends, we have made a lot of headway.  I  can tell you right now, I will NEVER buy a house with plaster walls again!

What I now do in my spare time...

Working women: Mom and Johannah

One wall finished!

Progress... and PLASTER FILLED air!!!  Yuck.
This is after ripping down two drop ceilings.  Notice the layers of
beautiful wall paper??  Talk about a walk back in time!

Once our bathroom and rear entry way is finished, we will have our carpets and upholstery cleaned, as well as our duct system.  That way it will be fresh, clean, and healthy when Josh comes home.  I miss our wonderful neighbors (who have taken great care of our home).  I miss our bed!  And I miss a commute to work that takes less than an hour!!!  Hopefully soon!

Josh has been getting more and more active.  He throws the frisbee for Boss, goes on short walks, and even took a short bike ride a couple weeks ago.  He typically visits U of M one to two times a week for check ups and procedures.  Now that I am back to work, we rely on his super Mom and Grandma to get him there.  Josh is still not allowed to drive and probably won't be for awhile.  I can't wait for that day to get here!

Josh will not be allowed to work for at least a year.  This will be a challenge for both of us.  Especially Josh, who LOVES to stay busy.  I think his biggest frustration is feeling helpless.  He can't work on the house or work at a job.  He is considering taking a few internet courses to fill his time.

We have gotten him out of the house as much as possible.  We have had quite a few family events lately between weddings and birthdays.  Plus, my two youngest sisters are down in Kalamazoo now.  Both attend college at Western Michigan University.  It has been great to have more family close by.

Jana & Jeff's Wedding


Party favors: a donation to the Nation Bone Marrow Program

Josh was so glad he could be part their special day!

We had Mom's Birthday party in Kalamazoo!

Mom & the boys.  Hanging out at Darcy's apartment before going out!

The Duitsman Girls

Mom & Dad

So our journey has continued.  In fact, it has gone as well as can be expected.  We feel more than blessed for each good day.  Again, I apologize for the delay.  My life has just been a whirlwind of busy with everything going on lately!

Now, to fill you in on why I had time to catch you up today.  I was out to dinner with my sister last night, when I received a phone call from the doctor at U of M.  They have found a bacterial infection in Joshua's blood.  They advised us to come straight to the ER to be admitted in the hospital.  We had to wait until Josh's home IV finished to leave.  We headed over hear around 10:00 last night.  We were so exhausted when we arrived. 

We started in the ER for more blood testing and to begin Josh on antibiotics.  We both fell asleep each time the doctors or nurses left the room.  At some point, I somehow drifted into a deep sleep in my chair.  I was woken up around 2 or 3am when they moved us up to Mott 7.  We are not in the same room, but we have all of our friendly nurse family back!  We took the last room on the floor and could not be happier. 

Around 4 or 5 in the morning, the orthopedic surgery department came and extracted some fluid from Josh's right knee.  His knee has been bothersome for the last month or so and they want to find out if that is where the infection started.  According to the doc, the fluid looked normal; however, until we get confirmation, Josh has not been able to eat or drink in case they have to do surgery.  If the infection is found there, they will get in there, clean out what they can, and inject medication into his joints.  Judging by the pain of the extraction last night, this does not sound like a walk in the park.

Once again, the amazing doctors here discovered the infection at the best possible time.  Josh had not shown ANY signs or symptoms.  No fevers, chills, pain (other than his knee), or weakness.  No sinus problems, cough, headaches, or trouble eating.  We are hoping that it was caught early enough to take care of it before it gets out of control.  I will keep you posted.

It was sad to leave Boss again last night.  He was all curled up in a sleepy little puppy ball, but he quickly sensed that we were up to something.  I am such a baby... I bawled walking away from him staring out the door with his sad puppy face.  Luckily, we received a picture last night from Josh's mom.  He was all curled up with his Grandma in bed, sleeping soundly.  : )

We had two busy weekends coming up.  We were going to go to a festival with some close friends tomorrow.  And we have our final fundraiser next weekend - the first one that Josh can actually attend.  It sounds like that will still be a possibility, which makes us very happy.  We are looking forward to a BIG party with all of our family and friends!  Josh might even try to golf!  I will most likely be participating in the beer drinking part of the day!

If you haven't heard about the event and are interested, just let my mom or Jeff & Jana know.  Anyone is welcome... we tried to let everyone know, but it is impossible not to miss someone.  There is golf early in the day, then a family BBQ in the afternoon / evening.  They are raffling of a flat screen TV.  Tickets can be won as well as purchased at the golf outing, and can also purchased at the party.  There will also be a silent auction at the party.  It will be a great fall kick-off event and there WILL BE KEGS!  Bring your game face!

Finally, there has been a new addition to the family.  Jana and Jeff bought a brand new puppy!  Mack is exactly one year younger than Boss and SO adorable.  We had both puppies over at my parent's house with Tank and Harley last weekend and it was so cute.  4 dogs!!!  I told my mom that Christmas is going to be crazy this year....  I think that's the only way events ever go at the Duitsman household!

To my wonderful family in the RV Claims Department at Foremost, THANK YOU for your help while I am gone unexpectedly.  I hope to be back soon.

And to everyone, I hope all is well with you and your families!  Hugs & Love, Heidi

In case you missed seeing this cute face... sleepy Boss under the coffee table!

Friday, July 30, 2010

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...

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!!!