Tag Archives: family

The Struggle is SO Real

This past week was horrid. Lots of mix-ups, including miscommunications at the hospital and among the doctors of our clinic. I ended up on the phone with our Allo Nurse for about an hour and a half yesterday after I sent an email to our doctor (who read it on vacation and asked her to please call me) about how things had been unacceptable as of late.

Cancer aware

It has also proven to be the most taxing ride our bodies, minds and souls have ever taken. Literally, Mark got super sick on Monday April 14th… today is the 16th of September!!! If anyone asked me if I thought we could last this long when it all started, I would have guessed- no. This has been five solid months of uncertainty, pain, heartache, grieving, surrendering to a life completely different from your intentions and plans and trying the entire time to have some sort of acceptance and some sort of strong fight as well as the ability to continually go with the flow and not allow yourself to succumb to the negativity and the suckyness of the situation. At times, I have run hard or done some kickboxing to fight through my emotions. Many times, I close my eyes and remember how it felt to allow myself to float in the waters of Belize as we snorkeled. Most of the time, though, my body seems to be struggling just to get through a day, let alone add to it any type of real workout.

Ribbon Color Chart Pop-Up 3

Until you come up against this kind of battle yourself, a life and death situation that lingers, I feel like it’s impossible to imagine all that goes along with it.

It gets more and more difficult for me to take care of the everyday little things in life- laundry, changing light bulbs, cooking, cleaning… these are all demands that by the time I come home to spend time with my girls seem so meaningless…. unimportant…. I ask myself, is this really what I want to spend the little energy I have left on?  I have to remind myself that my girls need a home that is warm and inviting and letting them know that they are cared for. I do what I feel I need to do and then I feel like collapsing.

Sunday, I spent about 2 1/2 hours bawling in bed. I literally said, “I feel like I want to quit eating and die a slow death.”  If I had not had some friends reach out to me, I may have called the doctor yesterday and asked for some medication. (Y’all know I don’t take medication!) Yesterday I went to Denver and Mark fell apart in my arms twice. Ladies and gents, this has gotten to this point. We need held up. The psychologist has told us we need to be in this boat together riding the hard waves of this great storm. If our family separates and we each stay in our own boat, we are just going to drift apart and ride the waves alone. So, we are riding together. We are having difficult talks, we are being honest with each other about our emotions and what is happening as we go through this as individuals and as a family.

It’s weird, because we don’t at all expect people to get it unless they have lived it and to try to find words to explain it all just doesn’t work. There really are no words that can express the difficulty of this.  I wouldn’t wish anything like this on my worst enemy, I can tell you that. And I try to remind myself, that when this is over, we will be able to use what we have been through to help others. I look back and remember how God has provided all along and I remind myself to trust Him still and that He is always good and will take care of us.

This battle has been long and hard, and it’s not over my friends. I was raised not to make more work for other people and so it is hard to feel like that keeps happening. My family keeps needing…We got the good word that cancer was gone last Friday, only to face the worst week we have had so far. At least with the diagnosis in the beginning, although unexpected, we had a definite plan of attack and we knew what to expect in many ways…

At this point, no one really knows what to expect. The doctor’s analogy is that it’s like being in a war and going through a mine field. You never know what you will step on at this point….

Mark is having what looked like Graft V. Host Disease from his endoscopies. His intestines are VERY fragile. He is in a TON of pain! Stem Cell transplants are different from other transplants in that they are not rejected by the body, rather, the stem cells reject the body and fight it as they adjust to their new home. It’s not all bad that this happens as it also means that they will attack cancer cells, but it is more than hard to be Mark Neu right now and have this new battle happening within your body, having not had much time with friends to speak of in months and missing your kids and your wife when they are away…and it is very hard to be me right now feeling torn as I live again (Still)  trying to take the best care I can of Mark in Denver and our daughters in Firestone. I can’t speak for my girls, but I just cry when I imagine their lives. So, if you are involved in our lives, I just want to prepare you, just about anything is possible right now if you are around us- but I think what all of us needs the very most is prayer, lots of hugs and unconditional love.

I hope you can continue to hang in there with us and be there with us. As I read in my studies, it is just as I suspected, PEOPLE NEED PEOPLE. It’s so much worse to go through something like this alone. You would much rather have someone look you in the eye with fear or tears and tell you the honest truth that this shit scares them, they feel helpless or don’t know what to do or that they don’t like to see you like this and wish you were healthy but be present, than to just disappear and have to go through all of this feeling isolated and alone.

Cancer punch

CANCER, I HATE YOU!!!!!!!!!! I ABSOLUTELY HATE YOU!!!!!!!!!!!!

 

10603403_10152258498491087_7948439960270094079_n

Day + 35 <3

It’s been a while!

So much has been going on!

On August 14th, we (my youngest two and I) took Shyanna to college up in Chadron, Nebraska. That drive takes me five hours. It was not easy because I love each of my girls so much and enjoy having them around as much as possible, but I KNEW college life was going to be just what this one needed at this point. She is mature for her age, knows what she wants, is very focused and really loves to learn. Campus life seems to suit her just fine! It’s exciting, too, because she is achieving her dreams and also playing college basketball (something she has wanted since kindergarten). She told me recently that she has officially achieved all the goals she had and so now is the perfect time for her to make some new ones and aim to achieve them as well.

10394563_10152252123336087_5805121129851276111_n

Monday, August 18th, our oldest daughter and I BOTH started college. My college this semester is a full-time on line load and I am enjoying it immensely. She is enjoying the freedom that comes with less class time and more time getting in the gym with other players who love the game as much as she does!

Tuesday, August 19th, the younger three started school. It’s hard for me to imagine the life they continue to lead with me only being home part-time and their dad living in an apartment in a different town, but they have been getting through this and are doing well. I am proud of them.

10502437_10152257600601087_5443298865687760646_n

So, continued prayer for our girls and all the transitions they continue to face and live through….

BUT, we are more hopeful than ever that things will be more back to normal sooner than later. Mark’s ANC has been up over 4000 for about a week. That’s normal levels, folks. The virus he had flare up CMV, was put back in check very quickly and he has had absolutely NO other issues. THANK GOD! And thank YOU, for your prayers! He has been on minimal medications post transplant and has been doing SUPER! We are all hoping that his time having to stay right by the hospital can be cut short if this continues!

This has been a long four months and we are still quite amazed that people haven’t just forgotten about us! One thing that is certain is that this journey has really helped to show us the depth and love of many people we have in our lives, it has shown us some wonderful friends and family that we really didn’t know we had until this happened and it has shown us that there are some we thought we had a closer relationship with, that we just don’t- and that’s ok. 🙂

10603403_10152258498491087_7948439960270094079_n

I am excited to finish up the course and move on loving and living life with those that have made it obvious where we all stand in a positive way!

It’s funny, but the older I get, the more I realize that life is full of people and the best relationships to have are the ones that aren’t forced, but happen naturally. The people I want to be around are those who love fully and deeply and have compassion and a desire to encourage others and  live positively.

Although it’s been difficult, this journey has also brought our family closer and that is a beautiful thing! It has given me a nostalgic feeling hearing from aunts and uncles and cousins that I don’t normally hear from who have realized that nothing substitutes for family when you go through something major. Of course, our parents and siblings have been right by our side even though they are over a thousand miles away and that means the world as well….

So, if you are still praying, please pray that all this goodness continues and that his Bone Marrow Biopsy tomorrow comes back leukemia-free and full of donor cells and DNA! 🙂

THANK YOU!!!!!

Callico

 

 

 

Clenched Fists/ Clenched Heart- Opening Up

I had quite a bit of time to reflect on things over the last week while Mark was sick and I sat quietly in his room watching over him.

This came like a revelation to me. I saw a picture of my heart closed up tight like a fist. (Honestly, this was very easy to imagine because I often notice while just sitting or even when I wake from sleep, my hands are fisted.) This fist represents a lot. First, it obviously represents a fight. We are definitely in a fight. Second, it represents tension. You don’t just ball up your hand into a fist usually in life- it happens when you are ready to punch something or someone, or when you are grasping a hold of something, tightly.

photo-35

In my situation, trying to engage in this battle, unlike any I have ever fought, and trying to hold life together for myself and my family at the same time, I can easily understand why my fists are often clenched.

However, the thing I hadn’t noticed until I had so much time to just sit quietly, is how the same thing has been going on with me internally. My heart has been like a fist. Trying to hold on and ready to fight at the same time.

The problem with this is that when my heart is clenched tightly, it is hard. Like a closed fist, when a curve ball comes in there is nothing soft there to absorb it or catch it- there is no “finess”. This explains why it’s been my first reaction to just be frustrated and angry when I get that curve ball. It’s like something is being thrown at me that just hits me- no absorption. No way to soften the blow -no way to receive it; it just bounces right off.

Tied to this is the fact is that I know our family is one strong machine in day to day living. We have moved not just to new cities, but new states three different times in about 10 years. We have home schooled and therefore decided to do without extras and luxuries compared to what we could have had and done if we would have chosen to be a dual, full -time income family. We have lost loved ones together- not just once, but a handful of times. These are examples of some of the struggles…. and none of them has put a dent in our strength, our faith, and our ability to keep making the most out of life.

This time it’s been the biggest test by far. Kids, living life with part-time (at best) parents. Responsibilities of running a home, figuring out schedules and taxiing and the like suddenly shoved at them full force. An exceptionally active mom, giving up all activities and normalcy of her life to become the servant between two places to two different groups trying to keep them both accustomed to life that seems as normal as she can, while grieving all that she has left behind herself. A dad, used to being the bread winner, and strong, never-sick-a-day-in-his-life hero, suddenly unable to walk more than a foot or two without being winded and needing to rest. A guy, who if you asked him, would tell you that when you take coaching basketball and being with all of his kids and wife is like taking drugs away from a drug attict – who lives without those constants as he battles. And so, there is more change, and those changes for these parents, bring even more change for   the kids. They see their mom struggling to identify how to live and how to live with joy. They see their hero fighting a battle and getting more and more slim and the battle getting more and more difficult for him as he goes. So, I know these kids want to help. They want to be strong, have compassion and keep going- because this is how they have been raised. But, you see this is hard on everyone. And the way it affects one, absolutely affects the others, because that’s the kind of family we are. We have always done everything together…. until recently. And sometimes, now, the people in this family feel alone.

This is where the devil wants us. He wants to destroy. He wants to try to break our faith, joy and love. Separate us from each other and from God. He loves to make us think and feel we are alone. I am reminded that this is indeed the biggest battle of our lives- it’s against him. Our battle/struggle :

Ephesians 6:12- For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.

But, as I remember that and see that actually happening so strongly in our family right now, I reflect on this:

1 Peter 5: 1-11

“To the elders among you, I appeal as a fellow elder and a witness of Christ’s sufferings who also will share in the glory to be revealed: Be shepherds of God’s flock that is under your care, watching over them—not because you must, but because you are willing, as God wants you to be; not pursuing dishonest gain, but eager to serve; not lording it over those entrusted to you, but being examples to the flock. And when the Chief Shepherd appears, you will receive the crown of glory that will never fade away.

In the same way, you who are younger, submit yourselves to your elders. All of you, clothe yourselves with humility toward one another, because,

“God opposes the proud
but shows favor to the humble.”
Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.”

I think this passage speaks volumes to and about our entire family right now. I know, I can’t believe Mark and I are actually elders – we are both getting gray and growing older, though, and this speaks to my heart. Everything in me has felt like I need to shut everything else out now… but I don’t. The opposite is true. I need to continue to shepherd the flock- that is first and foremost my kids- my family… but I am a servant – and must be willing to serve HOWEVER God is asking me to right now.  And even though there are many new responsibilities on my kids, they have to continue to respect us elders and submit to us and serve. We all need to be aware of the fact that the devil is up to no good and trying harder than ever to destroy us, so we must hold tighter to our faith. Having a humble spirit and thinking of others before yourself is imperative right now. Giving our cares to God and trusting him, believing that He will continue to make us strong and that He will restore us. We certainly are not alone!

I’m unclenching. It takes too much energy to keep your fists and for heart all balled up!

photo-36

I believe there are people out there on this same kind of journey and that is why I share HONESTLY from my heart with people so publicly. There is no shame in the difficulties we face in life- we all share them, just not everyone is so willing to let you know you are not alone by sharing their own struggle.  I don’t look at this sharing as being negative – I look at it as being REAL. Only when we are REAL can REAL change happen.

God bless you as you struggle. Each of us does in our own ways and in our battles. I hope me sharing this struggle, gives you encouragement as you fight. Don’t give up- just give your cares up and TRUST and PRESS ON! <3

Callico

 

 

Two Are Better than One

Well, today was a blessing in many ways!

IT WAS THE LAST ROUND OF CHEMO!! (and he was drugged up and slept a lot so he didn’t get sick!) HE’S CURRENTLY GETTING HIS LAST ROUND OF ATG! (Rabbit antibodies), and is still sleeping! 🙂  And, a second fundraiser event was held all the way back in my hometown of Painseville, Ohio, thanks to my sister and some school friends! WE ARE SO GRATEFUL!!!! It is unbelievable to us as we think about the wonderful support we have had from each of the places we have lived! Ohio, Oklahoma, Illinois and Colorado! It is delightfully overwhelming to think about the kind of wonderful and lasting relationships we have made in those four states!

photo-33

Fortunately, we have decent disaster insurance through Mark’s work, but we used up last year’s out of pocket and deductible in a couple of pretty quick months and now are starting over for this year. (They start over again every July-  WOOHOO!) So, the bills are piling up at home and I will need to start going through and making payments!  PERFECT timing! We also use quite a bit of gas between me running back and forth to home and here and the girls doing the same a couple times a week to visit their dad.

Tomorrow will be a day of rest for Mark. He gets to relax in his little hotel room- I mean hospital room. (Joke is all of us call it hotel room on accident in the Neu Crew… Or, maybe it’s just me and Mark!?

The whole thing I have been thinking about today is that we truly have surrounded ourselves with people. Over the course of our lives, we have met some incredible members of the human race and it is so true that we are stronger together! I cannot even imagine going through this alone – it makes all the difference in the world to have each other- us, those of you in our family, and our friends!

Oh- and here is just a sneak peak of the apartment house we will most likely be moving Mark into as soon as we have clearance from the doctors after transplant. (Most likely beginning to middle of August.) It is within walking distance of the hospital and CBCI Colorado Blood Cancer Institute and 7-11!! 🙂 So, it is right by where we are now and I have to say, I am falling in love with this little area. The city! Diversity, alive, fun!

photo-34

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:

photo.PNG

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!

photo-3

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.

 

 

 

 

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! 🙂

photo 1-3

photo 2-3

 photo 3-3

 

 

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. 🙂

Hospital Stay Number 2

We are so very grateful that we were able to have Mark home from Friday afternoon till Tuesday morning. There is just a certain calming affect that having all of us together at home has. AND he got to be at our oldest daughter’s graduation and party and then hang out with loved ones again on Memorial Day! It really was a GREAT weekend!

10269351_10152100359866087_4119624663307004907_n       10302174_10152100359916087_8573737820396696196_n

Here’s what’s happening now. They have donors that look like they potentially could be a match for Mark and THAT is FANTASTIC news! So, we are waiting to here from them (hopefully by the end of this week) as to which one is the best of the best!

Mark is undergoing a second and more “hard core” round of chemo this time and he feels like these dogs have bite and will get ‘er done. He gets a headache and his bones ache with this chemo so he feels like they are doing their job. I am up here again with him as this part makes me nervous. I don’t like the thought of him feeling bad alone.

10320464_10152100359741087_7398710919975194193_n

However, when the chemo isn’t poring into him, he seems to be of good spirits and able to do pretty much all his normal stuff.

He is being given a preventative medicine for nausea, eye drops, a steroid  and tylenol…. And is on a five day regimen of Cytarabine (high dose this time) and Clofarabine.

Chemo is a dangerous thing. Eye drops are to protect his eyes as his chemo can leak out through them. The high dose this time of Cytarabine could affect his Cerebellum so he has to write his name each day to make sure his hand-eye coordination are good.

I wish this were a tumor or something they could cut out, or attack just the area with the measles vaccine or cannibus oil ….The fact of the matter is that his type of AML has no clinical trials running yet and this is all we have. Pray for his body to respond well. Pray for protection over all of his good parts, please and that it just completely annihilates the cancer cells so we can move on quickly to the donor transplant. And, as always, pray that one of these guys who has been a 6/6 match in the preliminaries, will be a 10/10 in the end with the more definitive testing!

Here was the latest message from out Transplant Coordinator:

                                           10376172_10152098861006087_5331110104329370024_n

Where ever you are That’s where you’ll be….

Here, we are. We were just blessed with a four day weekend with Mark at home. Friday, we actually spent half the day in the hospital- and then came home – the day before graduation! AND the day our second daughter turned 17!! <3

photo-27

I cannot express with words how good it was and how thankful we were to have him home for graduation- but I believe this picture of our Graduate with her daddy does:

photo-29

Sunday, we asked for some time alone with just the six of us after church for the day. We needed that time desperately, and though I feel we need even more, our time is quickly running out.

photo-30

Today, Memorial Day is a day we will spend with Mark home again – adding back in his dad, step-mom, mom, sister and nephew. I woke up this morning crying, thinking, “I really wish we could all be home together longer.” However, I will take what I can get and truly am thankful for the time we have.

It’s important to our youngest daughter today that we go down to the park and play basketball today so he can watch her. She misses hearing him yell from the stands at her games, and since he has to go back tomorrow, he won’t be there next weekend to do that. FaceTime is wonderful, but it is not quite the same.

I enjoyed cooking for Mark yesterday- a big ole breakfast, some pasta stuff at lunch and his request for Pot Roast last night. This morning, he has asked for Sausage Gravy over biscuits which we lean red how to make while living in Oklahoma. He has often said to me over the last few weeks, “I don’t think anyone else would have stuck with me all this time through all we have been through.” Our soon to be 22 years together have been spent in Columbus, Ohio. Pryor, Oklahoma. Canton, Ohio. Romeoville, Illinois. Firestone, Colorado.

So, this is the news we have for you and it isn’t exactly what we were hoping but as with everything Mark encounters, he has pointed out what the “good news is”.

Tomorrow morning, we need to go back to the hospital. He will begin a new 5 day regimen of chemo- a bit stronger than the last 7 day treatment as there were still cancer cells found in his last bone marrow biopsy. They told us that out of the space consisting of cells which is about 40% , 40% of that has leukemia in it. So, we need to get rid of it!

This could be a very long process. According to my notes, after this round, there could be a 3-4 week recovery period. There is a 40-50% chance according to doctors of this putting it in remission. Our hope, is of course, that is does and that we have a donor by that time so they can get him ready for transplant with one more round of the kick-butt chemo that will clear out every nook and cranny and get him the transplant. (That is when the 30 days in the hospital and then 100 more days living in Denver would take place.)

When I add all that up- it looks like we are looking at 5 months, with everything happening as we are hoping and praying it will. When you ask Mark, he will tell you, that the good news is we will just go right through this and get it done. Badah boom, Badah bing. Chemo, chemo, transplant, recover, home. Game over.

So, DONOR and REMISSION are our two big prayer requests still- and we thank you for joining us.