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!

To my love,

I am sorry that you are experiencing these hardships. I often wish that I could trade you places, but I would never be able to handle your situation the way you do. You are the strongest person I know. You are a rock, standing tough against the storm.

I know that somewhere inside your mountainous exterior there are some areas that are crumbling. And that is okay. You are allowed to feel weak and scared sometimes. I will be here whenever you need to let go.

Do you know the best thing about beat up rocks? Over time they develop a unique character that sets them apart from all other rocks. Those rocks are the special ones. They are the ones that you somehow notice among all of the other rocks and the dirt. Those rocks are the ones that you always seem to find and bring home to me .... to show off their beauty.

I love you.

let it shine!

I'm back!!!

Wow! I know that it has been a LONG while. For the last several week's I have tried to go back to "normalcy," whatever that means... I did not want to think about the Leukemia part of our life, so I avoided it where I could. I have been meaning to write for weeks now. After a little encouragement from friends, family, and my amazing husband, today I am ready to share our recent news. I hope you have time because there is a lot of it.

After our last trip to the University of Michigan, we learned several things. Josh's brothers and his mother were not bone marrow matches. We are still waiting to hear the results on his father. The transplant team at U of M then searched the Be The Match National Bone Marrow Registry and found a couple 10 out of 10 matches. The first match, was a young male, which is the BEST you can have. He went to his first screening and for some reason was deferred. Something that he said made them think he would not pass all of the pre-tests. We have not heard anything else back about the next match. We continue to pray and pray that he or she is a good candidate, so we can have some sense of relief. Please pray with us!

U of M completed their testing on Joshua's blood. The reason that his CML cells are not responding to the medications is inconclusive. There is no explanation. Josh has always been a unique individual, so for some reason, we are not surprised! In re-testing Josh's genetics, they found a slight increase in CML cells. Our doctor's have advised us that we are still at a decent spot, but the risk has increased. We need to take action sooner than later.

We went back down to U of M on March 19th. That day was another hard day. We met with both Dr. Talpaz, the CML expert, and Dr. Choi, the transplant expert. Both of the doctors advised us that our next step is a bone marrow transplant. We need to be ready in 6-8 weeks. Heat filled my entire body. My heart was breaking.

As an over-analytical person, I started asking every question imaginable. This was not rationale! It was too soon. We are not prepared! What are the risks? What is the procedure? How long will Josh have to live in seclusion? And when I got to my final questions, You guys are the best, right? Everything is going to be okay??, my eyes filled with tears. I looked over at Josh and his were the same. There are no guaranties with a bone marrow transplant. They are very risky and every person is different. There is a 50% chance of survival in the first year. 50%. This is my husband we're talking about here, the love of my life. Oh God, please don't take him away from me. I felt numb the entire way home.

That night we called our best friends. And as always, they were there. We tell them often, but never enough, that we are truly blessed to have them in our lives.

One week later, Josh's mom called down to U of M to check in and see where they were at with things. They mentioned that Dr. Talpaz was attempting to squeeze Josh into a clinical (experimental) study for a drug that is showing good results. The chances were very slim and the waiting list was very long. But due to his outstanding reputation, he was able to pull some strings. Joshua walked up the driveway on that beautiful Friday evening and told me the news. He got in! Do you ever hear your body sing??? Well it is a lovely sound! Now, I must tell you, the chances of this drug working for Josh are not great. This drug is similar to the last two drugs he was on. But, a small chance is still a chance and WE WILL TAKE IT! He starts the drug on April 12th and we are enthusiastically hopeful! They are giving the new medication one month to show results. If there are no results, we move straight back to the transplant.

Now, let's go back to that sunny Friday. There is another reason why it was such a joyous day. Friday was exactly two weeks before the clinical trial begins. Two weeks is the exact amount of time that Josh needed to be off of his current medicine before it would be completely out of his system. When the drug is completely out of his system, we can safely freeze Josh's baby-making serum. Which means... WE can have BABIES someday!!! Praise the Lord for miracles!

At this point, I am not going to go into all of the complicated details of transplant. We will cross that bridge IF we get there. For now, let's pray that we don't! We have an action packed year of activities planned and we don't want to miss a thing!

Thank you for continuing to check in! Thank you for continuing to pray! We love you and your support means the world.

As for me, I am going to focus on keeping my chin up and my spirit high! There always seems to be a flicker of Light at the end of the tunnel!

God's blessings!

Heidi