Tag Archives: love

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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

 

 

 

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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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!

 

 

 

 

Be Still….

 

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Well, I feel it is appropriate to share this today, given that Mark’s ANC levels went down a bit and so we sit here waiting… still.

Everyone who knows me, knows I am always into something. I am busy and I like it. Over the years, my busyness has become more focussed. I used to just be a “yes girl”. I actually couldn’t say no. But, I learned how to say no to some things to focus more on what I was passionate about. Mostly, my family, teens, and fitness.

It was a struggle for me over the first couple of weeks though, not being sick- feeling as healthy as I always do, but not DOING any of my usual stuff. I began to hear God telling me that none of that stuff mattered. What He was showing me was that what truly matters most in life is that I know I AM HIS and HE IS MINE. It made me cry. I asked Him about it. But, I need to be helping people. I need to be there for Mark and my kids. I felt him saying “You need to just be.” Just be.

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That’s what I have been doing. I am just here at the hospital with Mark or just home with my kids. Or where ever I am…. but really, that’s all I am right now. Is being. Being still. Waiting. Being His and letting Him be mine.

People have asked me if it’s been hard for me accepting help from others since I am so used to usually BEING the help and I have to say… It has been easy. I know we need help. I know there is no way I can do this alone. I know my best option is to be still and know….. Know that we need the help. Know God is with us. Know that people are loving on us, like we love to love on others. Know that really this is all we can do…. BE STILL.

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Today, Mark woke up to some news that was not even close to being what we were hoping for. His ANC levels dropped some. Discouraging. Graduation is now in 5 days for our daughter, Shyanna and he was wanting to be home in two days. This HAS to be much harder on him than any of us. He is stuck in virtually the same surroundings day in and day out – been a day over a month now since he was admitted. This news today was enough to make him say to me, “You might as well go home. This is not going to be a good day.” But, you know what? I’m staying. I have learned from my friends through this time more than ever- that having someone there to give you a little “normal”- a little break from the new normal, some laughs, take your mind to another area of life- even if just for a short time during this time- can make a world of difference! I have stayed awake all night with hurting people before…. staying here with him now is really no different. It’s what you do when you love and care about someone.

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My prayer is that Mark and my girls will have this same conversation with God. (Or maybe they already have.) It’s easier to accept the waiting and the uncertainty and the lack of answers and all of this really when I know my job is that simple…. BE STILL and KNOW that HE is GOD. I am His and He is Mine.

I hope you know that, too. <3

 

PS- Pictures here are from a fire some of my best girlfriends and I sat around one night this week. Chairs and writing on bottom of one are fitting as one of my best friends, Kathy, came to stay with us and she has been helping in any way she can- she took things off our “before graduation do to list” including covering our chairs. She wrote scriptures on each one…. And, finally, Kathy went decoration shopping with Shyanna and I. It was the most laughter I had had since all of this came about. I am eternally grateful for so much love and support. That’s the kind of support I want to be for my husband and kids right now, too.

I WILL RISE

This is the song the girls and I heard when we were discussing what the bracelets for Mark should say.

This is what we believe!

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When Mark and I first started going to church together we came across a lady at The Chapel at Blendon in Columbus, Ohio who had the congregation praying over her for healing. (She had cancer) What I remember most is that she had a grin on her face the whole time as they all laid hands on her and prayed. After the “Amen,” she said, “I know God is going to heal me. I will either be healed and be here with you, or I will be healed and be with God.” That has stuck with me all of these years. I believe that with my whole heart. God loves us and He does not want us broken and sick, but healed and I believe that he makes that happen one of two ways.

Looking back on the past few weeks I have shared with our girls this story and also the following:

There are always going to be statistics, numbers, percentages and the like on one hand – or negativity and skepticism – and on the other hand there are always going to be miracles, hope, God and in this case one of the most positive people I have ever met in my life- Mark Neu. OUR job is to decide which side -or hand- we will focus on. I CHOOSE to focus on the side of miracles, hope, God and Mark’s positivity. I simply cannot live on that other side full of negativity. Sure, there will be days when we sway in that direction, but we CAN’T STAY there.

When the doctors first talked to us about years… 2 years of remission being the goal as it is then that leukemia most likely won’t come back, Mark said, he wants at least 5 so he can see Cadence graduate and the girls will all be adults. I immediately reminded him that we aren’t focussing like that. NO ONE knows the amount of time they have on this earth and there is no reason for us to limit his time! Our job is to live EACH day like it could be our last. To be loving and full of joy so our days are well spent.

If you know Mark, you know this had to be said on his worst day. Maybe his worst day ever- but he didn’t stay there because he knows where his focus needs to be! He continues to point out good things… I have often teased him over the years because he will say in any bad situation, “Well, the good thing is…” He is blessed with a positive attitude!

Sometimes, a positive attitude has to be worked at and doesn’t come naturally. And sometimes even the most positive people can run into a bit of negative. The difference is realizing you have a choice to RISE ABOVE knowing that He Who is in YOU is greater than any other thing… and then making the choice to DO IT! I WILL RISE! Just like this song says!

So, I hope if you want to help us raise funds and are far away, you can sell these bracelets with us after ordering them on line at www.24hourwristbands.com or if you are local, you can purchase them from us or at our fundraiser on May 17th at Echo in Frederick! 🙂

We love you and appreciate so much your continued support!

Callico