Monthly Archives: July 2014

Time for a Change

Ok- even though it seems like change has been ongoing since about April 14th 2014 (when we really began to see Mark become ill), we realize that some crazy change is about to happen in the next couple weeks and even in the next couple days!

We are moving into a place called Brent’s Place on Thursday. This is a home for cancer patients and their families. State of the art facility, really, in that it is the only one in the state that is cleaned and up to standards for the kind of clean patients with compromised immune systems need. So, Mark will live in a small community with his own two bedroom apartment which is needed so that those people who are coming to let me leave and tend to our kids have a room of their own, and so that when possible, our whole family can gather there to spend nights together, etc. Brent’s Place is amazing! I have been following them for several months (even before we knew we might ever need it) on Facebook. Check out their web-site!

http://brentsplace.org/index.html

So, we are about to have some more freedoms and some more restrictions. Mark has lots more freedom! He can go outside, go for walks, go see movies during non peak times, eat home cooked meals, sleep through the night without nurses interrupting, he doesn’t have to get vitals taken every four hours, he doesn’t have to capture his pee! So, this is all great for him, for us, and for friends and family who come to town as now life seems a bit more “normal”- whatever THAT is….

Restrictions come into play more for me, now. I will be with Mark 24/7. Which is good! But,  I have not been shy in talking with the social workers and psychologists and have been told that especially since I am an introvert, I need to provide myself some time through this that has nothing to do with Mark or my girls so I can stay healthy. That being said, I also need to be there for our girls and for Mark as much as possible, so we have collaborated with staff here and come up with a plan. There are six individuals (family and friends) who will each take one week every other week to come and stay in Denver with Mark so I can leave, stay the night at our house and be more involved with our kids. I will still usually be the one to come down and take him to doctor appointments as his primary caregiver and such, but our circumstances are a bit unique in that we do have four teens and no family that lives in state so I will be relying on the help of these wonderful people and dear friends in our community who have been helping and will continue to help out with meals, paper products, snacks, breakfast foods and toiletries for our girls while our family continues to be split and now, will be split even more! (Yes, I have created a list of things I need to get tomorrow for the apartment living Mark and I will be having, too!)

(The social worker just told me that having anxiety at this stage of the game is VERY normal as we have all along had a plan and known sort of what to expect next. Diagnosis, plan with chemo, going home, diagnosis, chemo, going home, diagnosis, chemo, transplant, going to live in an apartment in Denver time undetermined, doctor visits undetermined, plan of action- depends on what transpires…etc…. you get the picture.) Anyway, at least the anxiety I feel is to be expected!

So, in the midst of this, we prepare for Shyanna to go to college!! WHAT?! Yes, tomorrow, we are shopping to hopefully finish up getting her what she needs to be 4.5 hours away from home and on her own for the first time! Our other three girls start school when we return from getting Shy settled in at college and ….. so do I!!!

So, yes! There is a TON going on!

Why am I going back to school? A couple reasons.

1- If you know me, you know I do MUCH better when I have something to focus on and accomplish. There is literally nothing about my life that is as it has been since this has happened. I can’t teach my classes, volunteer at school or with That Place or with our youth group as I haven’t had any sort of consistency or schedule that will allow me to make those sorts of commitments and all the time that is needed to be involved with them. I also haven’t been able to be with my whole family in one place for more than several hours a week if we are lucky (usually on a Sunday). Going to school gives me something to focus on and do no matter where I am as it will all be on line. It also allows me to be creative since I am creating my own degree and find ways of helping others through this kind of isolating situation we have been going through through what I am calling Social Activity Therapy.  Perfect, right?

2. If one thing has become clear through this situation, it is that you never know what will happen and so, I feel it is a good option for me to have my degree finished so that if at ANY point I am needed to step up and make better money for our family, I am able. (I have been very blessed to have the freedom to volunteer my butt off over the years- doing all kinds of things I love to do and haven’t HAD to be paid for. But, this can’t continue forever…. most of the time in real life. I still say though, that I would love to go to a third world country and open and run and orphanage….. )

There will also continue to be adjustments for us all as if you know our family, you know we are the type of family who mostly still eats dinner at the table together. We go to all the kids’ events at school and sometimes split up because there is more than one and we don’t want anyone feeling neglected. We also are not coaching basketball- which we have done for over 13 years and for the last 6 years, we have coached basketball year round! So, times are a changing and there is just about nothing that seems remotely “normal” going on right now- except school starting in some ways.

So, please continue to pray for all of us through these on-going transitions.

Please continue to pray that Mark doesn’t get an infection, that he doesn’t get Graft v Host Disease, Pray against Leukemia, but that if leukemia cells do stir up the new immune system he has in place does work in Graft v Leukemia. Please continue to pray for healing and health and restoration – and that our family stays strong, and this continues to bring us closer to each other, other people who care and to God. Please continue to pray as you feel led- it’s all been working so far and we appreciate it and you so much!

THANK YOU!!!!

 

GUESS WHAT!?

Guess What?! Guess WHAT!? GUESS WHAT???!!!

PA came in today. Mark’s levels continue to rise. He is gaining his appetite back and eating more. He is feeing better. Chemo tears up the digestive track and he is healing from that… throat is less and less sore, he can handle food better and better.

So, this week we watch to see him continuing to improve. When he is over 1000 with the ANC count and eating well, no digestive track issues, and up moving around- HE GETS OUT!!

That could be THIS FRIDAY!!!! WHAT?!?!?!?!

So, yeah, I am gonna be up here today and tomorrow and head home tomorrow or Wednesday to get a little college shopping wrapped up with Shy, hike a 14er with a few of my girls and then, we will be getting ready for apartment living! It’s time for fresh air, sunshine, sleeping through the night without visits from nurses, it’s time for some home cooking and living life on the more normal side after 3 1/2 months of life turned completely upside down…. PRAISE GOD for a little normalcy returning! Praise God for health and healing and all of the MANY provisions we have had!

I’m a planner and this is happening sooner than expected. But it’s a welcomed event, for sure!! This does mean, however, that I can’t leave like I have been able to while he has been staying in the hospital-  I don’t have the every other week caregivers scheduled to start coming until August 13th, but thankfully, we have good friends here who will hopefully, be able to come let me go be with my girls some to get ready for school, spend some time with them for a few last summer celebrations, etc. AND we will be able to spend time as a family at the apartment which is GREAT! AND we can have friends over for more comfortable visits! 🙂

Bone Marrow will be taken at around Day 30 or 60- up to doctors. (Today is day 13) Then we will get to see how much, if any of Mark is left or if “#21” has completely taken over. #21 is how we are referring to our anonymous donor who is 21 years young… We’ve been joking that Mark is probably going to be wanting to go out every weekend, stay up late and carry on like a young kid while I am wanting to stay home and rest and go to bed early….

Feeling thankful and amazed!

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

 

 

Day +3

It’s July 18th. That means it’s been three months to the day that we checked into PSL. We are also at Day +3 or 3 days after transplant.

Mark woke up this morning feeling a bit better than he had. He turned on TV, talked more, sat up a bit. He ate a little peanut butter toast and had some tea. He continued to do well, by getting in some walking and we even played a couple games of checkers. Dinner by candle light – no just dinner for two at the cute little table in our room. (Which means he got up out of bed) Chicken Noodle Soup and a little bit of Beef Stroganoff on the menu, followed by a little bit of sitting and cuddling in Callico’s futon/chair.

We have a joke with the doctors in our room. He gets a chemo called methotrexate on Day+1, +3, +6 and +11. It can give you Mucositis – mouth sores and since I had trouble remembering the name-we just refer to it as “meth”. Yes, the jokes continue in room 3304. After all, laughter is the best medicine. 😉

 

Day +2

 

Bless the Lord, Oh my soul, Oh my soul, Worship His holy name. Sing like Never Before…

Symptoms- headache, High BP, body aches, nausea. Our doctor just came in and explained that it’s most likely that Mark feels so bad from the effects of the BuCy dose of chemo he had just had the last dose of Sunday. Or maybe it’s the additional load of new medicines he is on. Whatever it is, he assures us that it will pass….

This to shall pass. I can’t help but think on that today. Everything about this life is temporary. (Except maybe tattoos- those are pretty permanent.) Though this is hard to get through and it’s difficult, to say the least, to watch him feel like this and go through this, we have to remind ourselves that this is not permanent. Like the doctor said, it’s ok to have some bad days and but we aren’t going to stay there.

You can be having the time of your life! Laughing, having fun, soaking up the sun… but it won’t last forever. So, THOROUGHLY ENJOY IT!!!

You can be laying in a bed feeling sicker than a dog. But it won’t last forever, so don’t let it swallow you up! When you are down, LOOK UP!

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Aside from our own prayer requests for Mark to get through this time quickly and as easily as possible, I would like to put in a request for John, from Golden, our neighbor here at the hospital. He get’s his transplant for Lymphoma today! Please pray for him that it goes well. He is always zooming up and down the hall with a cheerful smile and a friendly hello! I wish the best for him!

Your love lifts us up! Love is powerful! THANK YOU!

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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

 

 

Hoping in the LORD

Good morning. This is my mantra now. This is my focus. I hold on to the promise that when we focus on God, we can overcome- Rise Up, like an Eagle soaring over a storm….. I made this picture to hang up in our hospital room this morning as he slept. Art is a sort of therapy for me…. and sometimes, it ends up being a blessing to someone else. 🙂

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Well, today began Busulfan chemo. It comes every 6 hours by IV for 2 hours over the next four days. He will be given other medicines that work as prophylactics to help the possible side effects before the first dose came this morning at 6am. After four days of this, he will begin getting Cytoxan once a day for three days over the course of a two hour time period each day. One day of rest, and then on July 15th- he will receive his new stem cells.

Nikayta was reading the drug info yesterday and said she understood that the Busulfan would kill fast growing cancer cells and the next drug, Cytoxan, helps prevent them from coming back- but she wished they didn’t have all the possible side effects. Smart girl.

Our family really never takes drugs and so this is a new thing for us and it’s scary reading all the side effects and then all the side effects of the prophylactics, too…. I guess this is what happens when a hippie chick and her family get thrown into the medical world!

So, we are praying that the chemo does it’s job to the cancer but that he stays as healthy as possible. We are praying that mentally and emotionally this next 30 days is not too unbearable. You see, this time, he is on a MUCH smaller wing and he is no longer allowed off the floor or to go outside. This is tough for a young, otherwise healthy salesman type person!

If, in an effort to help keep his spirits up, if you would like to send him something, or come by for a visit, it would be SO much appreciated! You must be healthy to visit and cannot have been around a sick person. He cannot have any real flowers or plants, but balloons are fine as is pretty much anything else that is man made. 🙂 Prepackaged food is also fine.

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Presbyterian St. Luke’s Medical Center

Mark Neu Room 3304

1719 E 19th Ave

Denver, Colorado 80218

You can call or text him also. People need people-that’s for sure and it’s just about like living in isolation around here unless you have a visitor. 🙂

THANK YOU ALL!!! We have held on to every call, every text, every card, every meal, every visit, every donation ….. everything you do (no matter how big or small) that shows us your love has made a HUGE difference in our fight and we can’t tell you how much we appreciate YOU being in this with us!!