Tag Archives: prayer

The Journey Continues…

Yesterday was day 52. Yesterday we got the results from the  FISH test they did on Mark’s bone marrow…. In case you haven’t heard….

That test showed that the translocation of chromosome #11 is not happening. The test showed no MLL and no signs of Leukemia AT ALL!!! (#11 was the one they were most worried about out of the three that were mutating.)

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Mark was pretty much as emotionless as he has seemed all along. He is a rock. I, on the other hand, cried on and off the rest of the day; typical. 🙂

This is EXACTLY what is hoped for when you hit a person with the big guns of chemo, wipe out their immune system and then introduce, new, healthy stem cells! Though we don’t yet have a percentage of how #21’s donor cells are taking over compared to what might be left of Mark’s, we know it must be heading in the right direction because….

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#21, in case you missed it before, is how we refer to our anonymous 21 year old male stem cell donor. We all TRULY hope we can meet him one day and let him know how much we appreciate him!

We are so thankful to God, for the way He has taken care of us this ENTIRE time! We are so thankful for the MANY people who have been like His hands and feet to us through this, taking care of our needs and even wants along the way. It has blessed us IMMENSELY! So much so, that words cannot even describe!

From here, we still need prayer. This journey is still just that, a journey. Mark and I are still living the city life and we still have people scheduled to come out and stay with him so that I can be home with our girls half of every week that he has to stay in Denver.  This was basically our first checkpoint post transplant. WE ARE ETERNALLY GRATEFUL for the results of this one, but, another bone marrow biopsy (Poor Mark- he’s had 4 or is it 5 already now.)will happen again around day 60, then around day 90, another around 6 months and then around 1 year.

Also, currently, with his immune system being suppressed, he has a virus which had been dormant, creep up called CMV. He has been taking anti-viral medication for it and keeping it in check- but it is there.

He also has a UTI- a viral UTI so we have to wait it out and just try to help the symptoms he is having- but we are praying that it passes quickly and without complication.

Lastly, he has had some tenderness and swelling in his abdominal region. They had tried to treat for GVHD and as said above, he is on medication for CMV (two things they think could be causing it) but it is not clearing up and the distention in his mid-section continues to grow to uncomfortable proportions, so, Tuesday this week he will have endoscopies done with biopsies taken to determine what the exact cause of this condition is so they can be sure to treat it correctly.

CMV info- http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514

GVHD info- http://my.clevelandclinic.org/services/bone_marrow_transplantation/hic_graft_vs_host_disease_an_overview_in_bone_marrow_transplant.aspx

What a day! What a weekend! We are planning on continuing our celebration. Yesterday it was just the two of us, but today, we will see some friends and be with three of our girls AND we are having a sleep-over with them at the apartment tonight! (I LOVE, LOVE, LOVE it when we can all be in the same place together!)

We miss and love our Shyanna, but we are extremely happy (and not surprised to report) that she is doing FANTASTIC as a college student and basketball player! 🙂 AND, she is bringing home a few teammates next weekend for a visit ! 🙂

HAPPY TIMES and we are thankful we can share this part of the journey with you!

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Kick it in to High Gear – Preparing for Battle

Hi! Today is Monday, June 30th. Today we go to the doctor to get blood levels checked and tomorrow we go again to have the way the Busulfan chemo they will be using metabolizes in Mark’s body so they can give him the dosage rate that will work best for him. We have one week before we delve into the “transplant process”. Spelled out by readmitting to the hospital on Monday, July 7th, BuCy chemo on Tuesday, July 8th, a day of rest on Monday, July 14th and Transplant on Tuesday, July 15th. Apparently, from what they say, Mark’s hardest time may be the two weeks following transplant when his levels are low and the new stem cells work to take over the place of his old. Right about the time he is being released from the hospital, my girls and I will be taking our oldest, Shyanna to her college to begin the new and exciting chapter of her life about 4.5 hours away from us.

So, this morning I read a little devotional page shared by a friend on Facebook from a book entitled “Keeping God in the Small Stuff”. It may seem odd, but I believe this is the next purchase I will make for our family. (We have been doing something weekly together to keep our focus though we are separated distance wise most of the time, we realize how important it is to stay together in our faith as we fight together in this battle.) The thing is, that one of the biggest lessons we have learned so far is that we NEED to focus little. Step by step. One day at a time. There is just too much that overwhelms you when you get ahead and try to take on too much with something like this.

This is the passage shared today:

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It reminded me of the fact that over and over again in my life, when i have come to a challenging time, I have had to sort of “Shift Gears”.  I told my girls recently, this same sort of thing. The Bible is clear. Jesus told his disciples, ” In this world, you WILL have trouble.” He didn’t say you might, or could…. “YOU WILL. But, take heart, for I have overcome the world.” So, as I read this today, I was moved. Moved and I reflected. I wish I could say I had it all together all the time. But, I don’t. I absolutely don’t. But, what I will say, is that God created me to adapt and change and this is what I want to share.

When I was getting ready during labor to push, I always took a minute to pause and throw my hair up in a pony tail. I was preparing for the workout ahead. When I teach fitness classes, I warm up, to prepare. When we drive in the mountains, our vehicle is used to a more flat and constant ride. Suddenly, we are climbing and descending very steep inclines and declines. What is necessary? SHIFTING GEARS.

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Recently, before this battle, I faced another littler battle. I had to stand up and against something very dear to my heart. I felt the need to stand up for those who weren’t standing up for themselves and who felt bullied and pushed around. It was a tough decision, as I knew that it would cause me to lose friends, but I also knew that it would be hard to look myself in the mirror if I stood by and did nothing when I knew how these people with less power (or seemingly less power) continued to feel powerless. I understood that God himself would not want this to continue and that if it was so heavy on my heart, it was for good reason. I filled myself up on God’s truth about defending others- especially those who need it. About being courageous and about the importance of lifting others up and encouraging them. I went into a battle filled with truth and focused on the love I had for those who were smaller- those who needed someone to help them. I didn’t like the battle, but I saw it as necessary and so, I went forward after filling myself up on God’s word and with much prayer.

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Now, we are preparing for the battle of our lives, and this little passage reminded me of the importance of the shifting of gears again. Of the preparation needed to be ready. So, my focus is that this is where we are and what we need to focus on isn’t where we are and what is going on- but on GOD.

Isaiah 40:31
… but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Oddly enough, this is the same verse I have already shared with two of our girls. Our oldest, as she heads to college at Chadron State to play basketball for the Eagles and to learn all she can about Human Biology before heading to Med School. Our third daughter as she is a runner… and feels like God made her to run- how fitting this verse was for her as she discovered this calling.

Isaiah 40:31 might just be my new life verse. I need my strength renewed. I need my hope to be in the Lord. I close my eyes and picture soaring on the winds beneath like an eagle… hitting that pace in my run where I feel like I can just keep going – it’s a good pace. This is my prayer for our whole family right now.

God, help our family to focus on the hope we have in the Lord. Let our strength be renewed daily and even minute by minute and second by second as we focus on our hope in Him. Let us run this marathon and not grow weary. Let the winds and the turbulence lift us and carry us higher that we might soar on top of it. In Jesus’ name I pray. Amen.

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No news…. Is good news?

Well, I am writing, not really for any reason. Just to say whatever  is on my mind, I guess.

I got the best sleep – or at least the most sleep I have had since probably somewhere around April 15th last night. I was literally so tired that I could not open my eyes when I heard people in our room at the hospital….

I’m looking at Mark lying in his bed sleeping so peacefully. I’ve been up since 5:30 and it is now nearly 7:30. I’m so glad he is resting. I heard him ask for a sleeping pill last night.

I feel for him. He is in sales. He is a people person. He has WOO (according to Gallop’s Strengths Finder) Winning Others Over… He is an extrovert. And here he is almost in solitary confinement in this hospital on the small fourth floor in room 9.

Sure, he gets visitors, but not daily and he is never surrounded by people where he can be like the comedian on stage making them all laugh.  I mean, I am all things opposite in this department and I would be stir crazy up here after a few days! He has been up here for, in total, almost two months – minus a few days out for good behavior. 😉

We are waiting this week to hear which of the four 10/10 matches is the best of the best for him. We are waiting up here to see what this last round of chemo did to his cancer. We are waiting up here.

My thoughts and prayers over him this morning go something like this:

The God of the universe made you. He sings over you because you are the apple of His eye. The God of the universe knit you together in your mother’s womb and you are His masterpiece, created to do good works. He made you with something in mind. There is a plan and a purpose for you, Mark Neu. And the good work that He began in you, He will see to completion. By His wounds you are healed. The Redeemer of our lives can and will redeem all. I pray He redeems your body and restores you to perfect working order. The author and perfecter of our faith knows you from the inside out. He does not judge on outward appearance as the world does but He looks at the heart. I pray that in you, He creates a clean heart- a strong heart and a heart that does not grow weary. Keep the faith. Keep running the course set before you and in the end He will say, ‘Well done, my good and faithful servant.’ In Jesus’ name I pray. Amen.