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!