Tag Archives: cancer

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.

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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!!!!!!!!!!!!

 

The Long Haul….

This past Sunday was the beginning of a very difficult week. Mark took the higher dose of 2 Ambien instead of the one he had been taking and as a result when his UTI woke him up, he fell, not once but twice and was very disoriented and since he didn’t let me know about the fact that he took that extra Ambien, I thought something was majorly wrong and called the doctor, who had us go to ER.

In the process, I discovered some things I would not have known otherwise …. he had blood in his urine (apparently since Friday) and his lower extremities were very swollen. (could never see that as he had been wearing, socks and long pants a lot.) I indeed thought this was alarming (though the ER docs. didn’t) and called our Allo Nurse when we got home to let her know. She had him readmitted. Being readmitted to the hospital is very normal and a big reason they have transplant patients stay so close to the hospital.

Mark wasn’t happy and to make matters worse, the communication at the hospital and between the hospital and the clinic was terrible!!

In short, his UTI- though viral- is clearing up. He is very tired, but at least he is at the apartment and at his next Clinic appointment, we have plans to complain about several mishaps that occurred due to communication break downs this week.

We are waiting results of biopsies on his upper and lower GI tract. Hoping to find out exactly what is causing his stomach to swell and hopefully have a plan to get him back to normal. 🙂

It has been a true blessing the people who have come to stay with Mark and take part in his caregiving a week at a time! First, Carmela and her husband Brett- some of our best friends who just happen to live in Oklahoma! This was perfect as they came when I had to take Shyanna to college and this could have proven to be an incredibly difficult week for Mark, but having the two of them with their incredibly positive attitudes, encouragement and love pouring out, made it a bit easier on him. (Of course everything in him was wishing he could bring her to college- so it was an emotional time.) The perfect people for that time!

The next person to come was Andrea, Mark’s step mom. She is a nurse and her expertise was perfect as he had developed his urinary tract infection, had become somewhat dehydrated and had to be given extra fluids at clinic and his medications were changing up quite a bit. It made both of us rest easier to know that she knew a bit more about the medicines and had her nursing knowledge to care for him! Again, the perfect person for that time!

Currently, his mom is with him and that, too, is perfect!! Who doesn’t want their mom when they are having a rough time… and this has definitely been a difficult week! He hasn’t been feeling great, hasn’t been resting well with the UTI  and it’s been frustrating. There is no other love quite like a mother’s love….

In the mean time, I have been able to, after four and a half long months, get home, spend some real time with our girls (who are still kids, by the way, and need their parents) and take care of things around our home. Although, to be honest, I usually have a day or two each week I get to be home that all I want to do is lay around because I am utterly exhausted. I’ve followed Mark around the country and raised four kids who were all born within five years, and had various things happen in my life, but THIS has been the most that has ever been asked of my emotions, mind and body in my entire life day in and day out. I am so thankful for all the support I have. I believe I may just crash when this is over.

Our family and close friends, especially, have been a rock for us! It’s also been great to have the opportunity to strengthen relationships with some family that we haven’t had the opportunity with as much (for instance, Mark’s dad is so much like Mark, that it is amazing and it really brought me and the girls a calming feeling when he was around) and some people I didn’t know as well before all of this and have had the chance to get to know- and I thank God for them daily, now. The way God has kept us all safe and secure and provided for not just needs- but also some wants- has been incredible!

I would be lying, however, if I said that I CANNOT WAIT for the month of September to pass and my HOPE is that in October Mark can come home and we can all just live in one place again….”I can do 30-40 more days of this…. ” “I can do all things through Christ who gives me strength.” These are my mantras and I now compare myself to the little train that could…. Or Dori, the fish who said, “Just keep swimming.” I have to just keep believing!!!

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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.

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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.

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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. 🙂

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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.

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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!

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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

 

 

TRANSPLANT TIME!

https://www.youtube.com/watch?v=O5d_gm9zrnY#!

He’s been given some of the toughest chemo to clear out his bone marrow and get rid of his immune system, he’s been given immunoglobulin (something like that) rabbit cells so if the donor cells want to attack, hopefully they attack that. He’s been given Tac… something which suppresses his immune system.

He’s been feeling sick, run down, tired and he’s stayed strong. Today, his ANC dropped about 1000 points! He still walked the halls with me! TODAY, at around 5:30pm MST, we begin again! It’s TRANSPLANT TIME!

It was AWESOME this morning to see him smiling so big from the many texts, messages and posts he received wishing him well and sending him love! <3

Now, we wait and he tries to eat some and he rests in preparation for the next big step- STEM CELL TRANSPLANT! Everything in me wishes I could meet this 21 year old male who just got a tattoo in February! I have such admiration and respect for anyone- let alone someone at this age and stage of life willing to take time from their schedule and life to get physicals, get shots, sit and donate stem cells all day and all for someone they have never met. I hope one day we DO meet and we can all give this guy a gigantic hug! I thank God for you, whoever you are and seriously pray for you every day.

There are lots of potential side effects and issues that could come up from this point. We are praying for this to be as seamless and smooth as possible and for Mark to be HEALED and feeling great as quickly as possible- but these are the details: Please join us in praying against them…. after all our God is GREATER- our God is STRONGER- our God is higher than any other.

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TheThird Month- first week was pretty hard

This is our third month up here and in that time, I have heard the weeping of three people who were losing- or lost a loved one. The first lady I had never met, but she was all alone so as she talked and cried on her phone, I gave her a gigantic hug. The next, I had met and talked to some… she and her husband walked the halls with us here. He had been fighting for a year. She didn’t want a hug- I think she wanted to protect me from her pain. She is sweet and would do that. Tonight, ladies I had never met. Both crying and making phone calls to loved ones to give them the news. I wanted so badly to do something- but the best I could do was pray as I listened to them talk and cry….

This can be a difficult place to be with the isolation and the whole hospital ambience… I never knew hospitals actually had a “smell” until we spent so much time here and it’s weird because I would often spend nights in the hospital with my grandma… of course she always checked out AMA cuz she hated them and their restrictions so much.

Mark has primarily slept for the past few days and I am glad for that because if he wouldn’t be sleeping, I am sure he would be puking. I’ve been reading, playing games on Facebook, chatting some, texting some, stepping out when I can to grab a bite to eat (smells bother him- but eating dried fruits and nuts gets old) from the “Snack room”.

You get tired from doing nothing and from the emotions and the stress and the nurses and doctors coming in and out all day and night. It’s not like being at home when people normally call first. You get sore from the futonish chair or the hospital bed and the lack of movement or the ridged chairs they have for you to sit in. But, you can’t leave either…. And I can’t imagine leaving him here alone right now- I can’t imagine being Mark right now-these are all his struggles, but so much more!

He felt good! His levels were up higher than they have been since this all started and he came in here only so far to be isolated, eat hospital food over and over and over again (I know some people who do that- eat the same meals over and over- but we don’t), swelling up from so many fluids, being given drugs that make him feel sicker than a dog… and then drugs to make him sleep only to get woken up every hour for “a quick set of vitals”.

Days like today, weeks like this week, I am reminded how glad I am that this is not our home. I’m constantly thankful for a tomorrow.

 

 

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!

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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!

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Rubber Meets the Road

This has been pretty smooth so far. He didn’t have any major issues with chemo and has been saying up until today that if he didn’t know he had Leukemia, he would go home because he feels healthy.

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Today, he began Cytoxan. It runs for 2 hours and was started at 12pm. It has made him hot and have nausea. Just a few minutes ago, he actually got sick. I am not nurse material for sure, as I sat behind him on the bed with my hands trying to hold him in support and give strength, while tears came from my eyes…. Since then, they gave him Ativan through his IV and he is sleeping, thankfully.

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At 4pm for 6 hours, he will get ATG-which is antigens from a rabbit, oddly enough and so as you can imagine risk of side effects runs as he definitely has a human body, not a rabbit’s. He will get tylenol and Benadryl to help combat these effects. The purpose of this is to guard against him getting Graft V. Host disease when they give him the stem cells in just 3 short days.

The doctors prepared us for this. They said this was where the battle would begin to get more tough. The difficulty will be the side effects and it will be the isolation. Isolation has already been a factor and it has not been quite a week, yet.

Please keep the prayers coming…cards, HEALTHY- call- ahead visits, texts, calls…. ALL are so very much appreciated!

Presbiterian St. Luke’s , 1719 E 19th Ave, Denver, Co 80218 Room 3304

 

 

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.

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!