Monthly Archives: June 2014

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.

Mountain roads

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.

runner

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.

eagle

Getting Ready for the Marathon and More

Phew! Tired. Today we took in a whole lot of info in a short amount  of time.

Before they discharged Mark yesterday, they gave us papers to look over so that we could be ready with questions today and then sign consent forms should we agree to move forward with the Stem Cell Transplant. Even though we did that, it was another thing entirely to listen to the Coordinating Nurse and the Transplant Oncology Doctor say all of it out loud, again.

So, the bottom line is this:

Mark has AML with a MLL which makes it a tougher kind of leukemia. He also has malfunction with chromosome 11 which is one they (doctors) really don’t like. (So, we don’t either.) Next, he did not go into remission with the first round of chemotherapy. This combination makes him a high risk case. However, he is young and otherwise very healthy so instead of them grouping him in the 10-25%% cure category, they are saying 20-50%. These are better odds and MUCH better than just chemo alone which would give him less than a 5% chance for a cure.

Sounds heavy, huh? Well, my mom said, “Sombodies have had to beat the odds or there wouldn’t be a range of 10-25% to talk about, and it’s about time those numbers move up a notch or two!”  I told Mark that he’s the batter and he can hit out of the park! My brother, Steve said, ” Cavs had a 1.0037% chance to land 1 pick … and they got it, bottom line- any chance is all he needs.”  My friend Robin said, “There are always people who break through the stats. That will be Mark.” God says, “All things are possible.”

So, the doctor compared this to a marathon. He said after that one month in the hospital before having to live in Denver, it would be considered one mile of that marathon. He also said we could compare it to a Mine Field. You have to go out into the field, but it is full of mines you try to avoid- Infection, Relapse, Graft V. Host Disease…. He said the infection possibilities are limitless and crazy sometimes and that there are many different ways GVHD transpires and different levels. Short term and long term side effects are not uncommon from medicines and chemo.

The doctor said that we always worry about relapse. He said our first goal is getting through the first 100 days. Then a year, then we get greedy and try to get more.

So, this is the long and short of it. This transplant is one of the most medically complicated procedures. They basically replace Mark’s immune system and bone marrow. His DNA will soon read out as the DNA of his donor. He will have to begin getting all of his childhood vaccines again after a year post transplant when his immune system can handle the shots.

For those who have a medical background- they are using Busulfan and Cyclophosphamide for his guns blazing chemo going back in beginning on July 8th. His regimen will last 6 days, he will get one day of “rest” and then the very next day, July 15th, they will put stem cells in just like they would a bag of blood or platelets.

He will continue on many medications including Immunosuppresants and antivirals, antibacterials and anti fungal as long as they feel he needs them.

For now, we enjoy the next 10 days he is at home. When he goes back in, he will be in the hospital for one month and then be living in Denver by the hospital about 100 days.

Today, Mark signed all those papers to continue with transplant and this battle we are fighting.  It was more time consuming and had more signatures than anything we have had to sign for so far in life. Then, we did just as he wanted and went to a late lunch at Olive Garden!

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Please continue to pray. He has been so positive. Pray he continues to be. He has responded well to chemo with little side effects, please pray that continues. His blasts are below 5% at only 2% right now…. please pray that the next chemo destroys all it is supposed to to allow the new stem cells to come in and take over. Pray for graft v. leukemia instead of graft v host disease. Pray for health and wellness in every way possible- physically, mentally, emotionally and spiritually for Mark, but also for our whole family. Please pray that our insurance covers the housing in Denver. We have appealed it as originally  they said no and it is necessary. (We are hoping for an answer early next week.)

THANK YOU SO MUCH for all you have done so far and THANK YOU SO MUCH FOR PRAYERS and money you have sent, texts, calls, cards, time you have given us, events you have put on and will be putting on to help us raise funds. WE ARE SO BLESSED!

 

 

 

 

Stages and Struggles- We Are Not Alone….

This place is a place to update you on the status of Mark and this Leukemia we are fighting.

However, as we wait in the down time for more news, I sometimes feel compelled just to share my own personal thoughts and journey. I have told you before, it helps me to write. It’s like therapy. But there is more…

I believe we share with others as a way to help them. No struggle we go through on this earth is completely unique to us as we all have similar struggles, and so when we open up and let others know what we are dealing with it helps them in a couple of ways.

1. It shows them they are not alone.

2. It gives them freedom to be able to share their own journey with others.

Today, the update news I have is that it looks like we are on track still. We are simply waiting for Mark’s ANC levels to rise so he can hopefully come home and spend as much time with us as a family before the transplant.

The rest of this blog is about my personal experience with this right now.

Friday night some friends put together a Zumba fundraiser for us. I was asked to participate which under normal circumstances, would have been an instant YES! OF COURSE! However, this time it was sooooo different and  it took me a while to figure out why.

What I have come to realize is that with Mark having this illness, we are in a state of grieving. There has been a tremendous loss happening in our family and there are stages that go along with loss in any situation, really.

Denial, Anger, Guilt, Sadness, Acceptance. The stages of emotion that a person has throughout what is known as the Grief Process cross over and happen in random order sometimes, but they all happen. Some word these a bit differently, but I will share with you why I picked these….

Denial- this is a stage of feeling like it can’t be real. Like, there must be some way of this all being a mistake or something. This is when I feel people try to make deals with God and do what they can to make it all go away.

Anger- this is the phase when we are just downright pissed off that this is or has happened.

Guilt- we feel like it is somehow our fault. We could have or should have or need to do something to make it right or better or prevent it. Sometimes, we feel bad that we are still able. Still living. I experienced this when I went to a Zumba fundraiser for us on Friday. Every time I thought of getting on stage and dancing, I cried and I came to realize it was because I felt guilty that I COULD go and COULD dance. Then, as I was there and tears were rolling as I first started dancing, I remembered council I had given to my daughters when they lost their cousin at the young age of nine…”She would still want you to dance and have fun. She can’t dance and be a kid here anymore, but you still have that opportunity and this should make you appreciate it even more- knowing that you can still do it when so many others cannot. LIVE the life you have been given to the fullest! Make the most of every day, because there are no guarantees.”

Sadness- this is when we are sad. Sometimes, this can turn into depression and when that happens it’s necessary to seek professional help.

Acceptance- this is when you probably don’t like the situation, but you realize it is and you will adapt and continue to live in this new way.

So, through this diagnosis and treatment of Leukemia that my husband Mark faces, I have felt all of these emotions over the course of the last two months. So has he, I am sure and so has anyone close to us. Including our kids.

In fact, it was on my first trip to the hospital that I was saying to God, “Please let them draw blood and say this was all some mistake.” And then I did it again about a week later going back up to the hospital to visit. “Can’t you just make this stop? I want to get to the hospital and have him be cured. What do I have to do?” Denial and bargaining examples.

Sadness has been disbursed throughout. It’s in the little every day times and in the bigger moments of plans made before diagnosis that have had to change, in the being apart as a family almost constantly over so many days and in trying to juggle things and know that our kids are missing him cheering them on and that he is missing doing it. It’s in the parenting alone and filling him in later. This part has probably come and gone the most frequently for me, personally. I have some days that tears just flow out of my eyes and to anyone from the outside looking in it would seem like maybe I just have allergies- and I do- but sometimes I just cry. In the middle of nothing and for no real apparent reason.

Anger. Well, this is something that I could have easily shared on Saturday, but refrained because I was positive that it would be extremely ugly and I wasn’t sure everyone would want to open up a post titled F@()K in all caps and the biggest font size I could find. I woke up angry and I stayed angry for about half the day, really. I am not a person who swears much, but that morning, just about any word in my head was a cuss word and I was angry at everything and almost everyone.” WHY US? WHY NOW? WHY HIM? WHY MY KIDS? NO! YOU DON’T KNOW. I DON’T WANT TO HEAR ABOUT ALL THE STORIES YOU HAVE. I DON’T CARE WHO YOU KNOW THAT HAD CANCER. YOU DON’T UNDERSTAND! STOP TALKING! ” And there is more, but I am sure you get the idea. See, you would not have enjoyed a post from me that day at all….Anger is part of it though. It’s real and it’s ugly sometimes.

I feel like there are bits and pieces of acceptance almost daily, too. I don’t really have a choice. This is like a card game and these are the cards I have in my hand. I’m going to do what I can to play it out as best as I can, I guess… I try to count my blessings, to focus on positive and to be a rock for my husband, and each one of my four girls… and they are all trying to do the same for me and each other. We have been called the “Neu Crew” since our oldest was about 4 and it’s made us sort of a team. So, we come together and we try to do life this way- as a team. This is the first time in our life, really though, that I think we all realize we need some extra players to join our team because this is the hardest battle we have faced and we need to be able to sit on the bench and rest some which requires someone coming in and helping out for relief.

So, if we talk much or at all be prepared that at any given time anyone in our household could be feeling one or more of these emotions. They are all necessary as we deal with this illness and the changes it has brought about. We try to be overcomers and to handle it- but we aren’t always going to be on our “A” game. Please don’t take it personal. It really isn’t about you.

If you have ever lost anyone or fought a battle such as cancer or lost a job or lost anything important to you, really, you can relate on some level. As I said, none of us struggles with something completely unique to ourselves. We share in these trials and it helps to know that others do, too because then we know we are not alone.

 

 

 

 

Faith….

All you need is faith the size of a mustard seed.

Faith is believing in what you cannot see.

Your faith has healed you.

My faith is realizing that I have tried living without faith and I realize that I always have faith in something. Whether it be a person, a thing, a theory…. It takes faith to sit on a chair and believe it will hold you up. It takes faith to believe in evolution as there are some things there they have no real evidence to back. It takes faith to trust that someone will love you and do what’s best for you when you give them your heart — or open up and share with them who you really are.

It takes faith for me to have the set of beliefs I have. I believe in God, our heavenly father. I believe in His son, Jesus coming and giving his life for us and in his resurrection. (There are plenty of historically documented stories about his followers who died and went through some of the most awful deaths because they believed in Him- and I would ask myself, if he didn’t make that second appearance, would they have? I don’t think so. Because then, he would not have been who he said he was and they would have only watched him die and been completely let down.) I believe in the Holy Spirit and I believe it lives in each of us to guide and direct us if we allow it.

So, I have tried life without faith in God. I have come to points in my life of feeling abandoned and rejected and unloved and I have thought there must not be a God that loves, either. I have seen the unfairness of illness and death too many times and thought WHY? If there is a God, WHY?

I have realized that when Jesus was here, he said, “In this world you WILL have trouble. Take heart, I have overcome the world.”  This is truth. There is LOTS of trouble in the world. You really can’t avoid it. It’s everywhere and if you haven’t run into any yet, I promise, you will. Without the HOPE I have in God and an eternal purpose and plan, I don’t think I could overcome some of the turmoil I have been through.

Without the grace of God and the straying I have done in my life, I don’t think I would actually be alive today- and I am thankful that I didn’t take anyone else down along the way.

The truth is, God has changed my life. I was an angry, unloving person who would punch holes in walls and start fights. I didn’t know the power of that LOVE that is God and how it drives out fear and gives you a peace in times of uncertainty that just really doesn’t make sense.

I KNOW that kind of love now. I also know we live in a fallen world where that love does not reign-but darkness does…. That is why this isn’t our permanent residency and it why there IS trouble. Sickness. Pain. Suffering. Death. These things were not part of the original plan. Sin came in and it’s stayed.

I believe the Devil comes to steal, kill and destroy. Steal your joy, your faith, your foundation, belief system, love, compassion, kindness… anything good. He wants to kill-our relationships with God and others to separate,  cause death…. DESTROY-until there is none left-destruction- done.

I choose daily not to let that happen sometimes because sometimes it’s a daily struggle not to be overcome with grief and sorrow….

Forrest      dark forest path

Faith. I trust that based on my life experience so far, life is better with God. My relationship with Him is what has gotten me through so many things in life. Sometimes  I can see the forest ahead and it is light and it is beautiful and I walk with anticipation and excitement as I am on an adventure. Sometimes, it’s a little darker and I can’t see much except the path ahead — but I forge on knowing that it will lead me to where I am going. Sometimes, it’s pitch black and all I have is this tiny little ability to see the very next tiny little step and so I slow down and just focus on that tiny little step in the darkness….

very very dark path

Faith…… we all have it in something. It’s our choice to decide where we put it.

 

The Path None of Us Planned

We are moving forward!

Mark is in the hospital until his blood levels ANC (Absolute Neutrophil Count) comes up. So that he can have a little break before Transplant, they discharge him for a time. We are hoping that the time is soon because we have a tentative schedule, that as long as the donor can work within the dates they have requested (to get his physical, start getting his shots to stimulate his bone marrow to produce stem cells and then the date to actually donate the actual stem cells), we have an action plan for Mark.

Here is what we are looking at- August looks pretty blank, but mid-August, about 30 days after transplant, is most likely when Mark will be discharged to living in a place close to the hospital in Denver for about 100 days. WE ARE STILL PRAYING THE INSURANCE COMPANY WILL AGREE TO COVER THIS! 🙂

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Other than that, now you know what we know.

Because this time we know about the readmit and sort of have a plan going into this, we are able to plan a bit for our girls as well.

Starting in August when he is discharged to live in Denver, he will need 24/7 care. We have had some wonderful people (both family and friends – our framily) step up to offer to come a week at a time to let me have a

break. I will always still be involved as his primary caregiver, but I can at least leave Denver

then, to come home and take care of things around our house and our daughters. We also have a few friends in our area, who will come on the weeks I am in Denver doing 24/7 care, to give me a break, or let me come home or whatever. We truly are blessed by these people who put their own needs aside to come and serve our family in our greatest time of need.

Shyanna will leave for college pretty close to the time that he is discharged in August, so it will be strange having one less girl at the house (well, really two less, as her bff Alexis practically lives with us, too.) I will take her to college with my other three girls August 14, 15 and 16. This will be a HUGE weekend for us with Mark being newly discharged and all the emotion that brings and our oldest heading off to college about 4.5 hours from home and all of the emotion that brings! (Mark was cute, and has already asked one of our over 6 foot friends to walk around campus with us so the guys think Shyanna has a big dad! lol)

This time of life, is really NOTHING like any of us planned, but we continue to try to stay focused on what is positive and good. We have gone from being virtually a family that does EVERYTHING together with our kids ALWAYS having at least one parent there (often we have had to split up to attend their activities) to a family who has part-time parents at best, sometimes. But, we are doing what we can.

Our goal is to continue to keep Mark as positive, safe and healthy as possible, and to keep life as close to regular for our daughters. We are in constant communication with them. We

know and understand how much this has shaken up our lives and we do not want to do any more shaking than necessary. We have had people to offer to come and live with us, but during this time, that would just be another adjustment everyone would have to make. So, we have a wonderful community with an amazing friend stepping up again to help plan for needs and with meals that will be home cooked and delivered,

toiletries and snacks will be provided, and even people who have volunteered to stay with Mark so I can go cheer them on, or others who will take our place and become their biggest fans at their events and games. We are truly blessed and I am reminded that friends in many ways become your family when you live far away …. And we have many loving family members who are doing what they can for us from a distance.

AS ALWAYS PRAYERS are SO appreciated and needed as we keep moving along down this path that none of us planned.

Yes, I jumbled this up on purpose as an expression of our lives being jumbled up right now. 🙂

The Leukemia Roller Coaster

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Last post boasted about the great work of chemo and cancer-free news!

This time, I write after another night of terrible sleep and watching Mark nap on and off as we wait for news about his newly developed bacterial infection.

Dizziness, fever, headache… turns out there is some bacteria present at least from pic line blood culture and we wait to rule out any other areas of infection. And we wait to hear what the doctors think should happen next. The Infectious Disease doctor was in and will meet with the other docs. to discuss and they will come in with a plan. In the mean time, he is on two IV antibiotics as well as the oral ones he has already been on. They will watch the blood cultures from the peripheral and pic line blood samples over the next five days. And decide what other areas of his body they need to test and or watch.

AND THIS JUST IN—> BOTH PERIPHERAL AND PIC LINE BLOOD CULTURES SHOW BACTERIAL INFECTION COCCIT CHAINS. MARK CONTINUES TO SLEEP- TWO IV ANTIBIOTICS – ONE EVERY EIGHT HOURS AND ONE ONCE A DAY EXTRA FLUIDS AGAIN THROUGH IV AS WELL.

This is life with or without Leukemia… there are ups and downs, some hills are steep, some, barely noticeable. Sometimes, you even get thrown around a loopty-loop and every once in a while you are full speed ahead and it seems that nothing could possibly change your path or throw you up out of your seat (thank God for safety restraints), because, then they hit and you are bouncing all around again!

Roller-Coaster

What I have known for forever, is that when you get to caught up in your own life, you become a miserable person. I don’t believe we were called to a life of “self-focus”. So, what we try to do is be a light even here, on the forth floor of this hospital for others. Whether we are going up, down or all around on our own ride, we realize everyone else is on a ride that does similar things.

So, we have met people here and become interested in their lives and asked them questions and let them know we care. Then, we pray for them and for you and for our own needs. We are all in this life together and I believe we were made to love and to be loved by God and other people.

There is an older man up here who can’t hear us, but he enjoys talking, George. He has loads of kids and grandkids and he gets out of his room and walks slowly and socializes with anyone he meets.

There is a guy named Mark from Ohio up here and his wife is Lisa and they live in Denver. He is a lot like my Mark. They both are determined to beat this illness they fight, they walk fast and they tell the doctors, “I don’t care what it takes. ” Funny, they are the same age and he grew up in Bowling Green not far from where Mark grew up in Lima.

Another young man, whose name escapes me- 40 – his mom lives in St Vrain Ranch- the neighborhood right next to ours. He lives in Mead. He may get to go home today! 🙂

Randy is in the room next door and always has a smile ready to share….

Then there is a new couple here from Kansas. They were like us and didn’t realize that this initial visit would not last days but weeks. I am thinking of taking Kathy, the wife to lunch.

Another couple, the wife has the illness and her husband is in the ministry and they are very supportive and caring people. You can see their love glowing around them.

We have had one very young guy who I only saw being brought up here with a neck brace. I saw them helping him walk once with a walker. He was about 19. He was transferred before I got to meet him, but I have prayed for him every day since I first saw him. A reminder, not to waste time- it doesn’t take much to say “Hello” and introduce yourself.

Sadly, there has been one couple- the first couple we met. Andy and Robin. They had been fighting Lymphoma for a year…. the last time I saw her, she was in the family waiting room with some friends and asked me how we were… after I told her, she said they were not doing well…. the next thing I knew, the very next day, they were gone. I imagine hospice was called in and they went home….

We are trying to get people interested in some social time around here- though, yesterday was the first day. We offered poker – and a few stopped by and talked, but none sat down to play yet, so we just played with our girls. But it’s a start. We need community and being up here in almost solitary confinement, it’s hard to keep the social aspect of living that we humans desperately need.

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The nurses and the doctors, though, too. We try to learn all their names. What a draining field to work in. Always helping and serving. What compassionate hearts they have-we have seen tears more than once. It’s fun to ask them about their families and lives and see their faces light up with joy. It’s also fun to hear them laugh and joke around with Mark as he lets them know his plans for getting out of here each day. 😉

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So, I guess what I am saying, is we are all riding a roller coaster of life. Whether we are sick or injured or healthy and strong. Life is never consistent and we are never better to live or ride alone.

Thank you for riding this coaster with us! We love and appreciate you! I want to leave you with this post I saw on Facebook today:

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HOORAY!!! What’s Next?

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I like this picture. Although it is cute, I don’t agree with the name it claim it philosophy. I realize that just because as a kid I wanted ice cream and said I was getting some, my parents had the final say. I believe it is the same with God, as our heavenly Father. I do believe He wants what is best for us always, but I also know His ways are not always my ways and that I will not always get something  simply because I want it or believe I will get it. However, I am extremely thankful to announce:

HOORAYYYY!! Today our sweet doctor came in to happily announce that Mark’s bone marrow is E.M.P.T.Y.!!!!!  Everything is gone, including cancer!!! That’s right- NO CANCER!!! Thank you for your prayers!!

So, we are waiting for his ANC counts – total neutrophils- to come up so that he can come home for a spell before transplant. They will be contacting the best of the best donor that they have chosen, a 21 year old strapping young lad with even the same blood type as Mark, to get his very precise physical done and a date for him to begin shots to stimulate his stem cells and push them out into the peripheral blood where they can be collected and then taken in for transplant and given to Mark.

Praise God, I cannot express in words what a relief it was to hear these words!

no-cancer-sign

What’s next? Once his level comes up (they want him to have something to fight illness, and be able to clot blood, etc. he will be given a little break to come home and spend some time with us. During this time some tests and preparations will be made to ensure he is in good shape and good to go for the next BIG GUNS run of chemotherapy which will wipe out every nook and cranny of his marrow to allow the stem cells from the donor to enter the marrow and take over for Mark’s. The tests for Mark will in total take about a day to a day and a half.

The donor (we will not know who it is for a year), will go through their own set of tests and prepare as stated above to give stem cells. (It is like giving blood and as the blood comes out, it goes through a machine that pulls out stem cells and gives everything else back to the donor) then they refrigerate the stem cells and get them to Mark within 24-48 hours. (Where ever in the world they are coming from.) I cannot wait to meet this young guy who is so willing to give of himself to help save a stranger’s life!

So, as you continue to pray, please pray for Mark’s health, the health of the donor, the transplant to go well and the insurance to approve the 3 month housing Mark needs to stay close to the hospital once he is released from the hospital one month after transplant!

We are blessed to have people all over the world praying!

THANK YOU Tag Cloud (card thanks greetings gratitude welcome)

Some Explanations

I don’t have all the answers. I have more questions. AML  and it’s likely outcomes are very closely related to the sub-type you have and what is going on at the chromosomal level.

I believe with my whole heart that the exposure to benzene and toluene in Mark’s first six years out of college as a chemist had much to do with the condition he now faces. Why are so many KNOWN carcinogens legal in our country?

 

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.

 

 

Yesterday I Danced

If you know me even the least little bit, you know I love to move. There is really not a rhythm or genre of music that can start before some part of my body starts to follow the beat.

I teach fitness classes and my movements always match the music. I love to dance. Freestyle of course, as it was very long ago that I took ballet and realized I didn’t have the patience for it – at about 7 years old I believe, so long ago, I don’t really remember….

So, I LOVE worship music. Since all of this began, I have cried more than I ever have in my life while listening to it. Usually, worship music makes me move just like any other music- it fills me up and I find strength.  Lately, I hear worship music and I empty out and realize how weak I am.

We found out Mark had Leukemia  (AML) on Maundy Thursday. On Resurrection Sunday, I took my girls to church and for the first time in my life, I lifted my helpless hands and CRIED in worship. I was telling God in my mind, “I raise my hands and praise the God who gives and takes away. And I’ll praise you in this storm-  I will lift my hands, for you are who you are no matter where I am. And every tear I cry, you hold in your hands. You never left my side and though my heart is torn, I will praise you in this storm.”

“I will praise you in this storm.” And up until yesterday, that praise was really my relinquishing all “power and control” to God alone and understanding that He is God and I am not and I learned a new way to praise and worship Him – Through my helpless tears.  Yesterday, I moved my feet and clapped my hands and I felt some joy in my worship that I haven’t felt in a while. At first, I felt weird. I have joy? How?

I believe that God is my source of joy. I have had two points in the past month and a half where I thought for sure I was going to need to be medicated. My hands shook and my tears fell and  my stomach felt as though my gut had just been punched a few times and I thought, “I’m not going to make it.” And I prayed and I asked for prayer and somehow truly had a peace that surpasses all of my understanding and I made it through and I didn’t take anything at all to get through it.

I know I am not always going to feel like dancing when I hear worship music now. But, yesterday I did. I also know a new freedom and that is to fall absolutely apart before God and trust that He will pick up the pieces of my breaking heart and He will hold it (and me) together. I cannot describe in words the way this feels- but it is a beautiful thing and it is one thing in this big mess of a storm that I am grateful to have found.

Here is the song by Casting Crowns…. I suppose if I were still writing lyrics as I did back in my late 20’s, these would have been the ones I would write right now.