Tag Archives: friends

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

 

 

 

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

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. 🙂

Attitude is Everything

Well, I am going to be honest. A few days ago, my attitude sucked.

Thank goodness I wasn’t at the hospital with that poison. Yesterday morning, when I woke up after spending the previous day and night in prayer, I used my journal to write down all my negative thoughts and then I was going to practice what I preached to others and try to live myself and figure out what possible good might or could or is coming from each of those negatives. Sometimes, it is a stretch. Sometimes, it takes an imagination. Sometimes, it takes faith- but for each of the 5 negatives I wrote- a much longer positive description was beside them.

Here are two of  my examples:

(Notice also that the things that were getting me down, were “me-focussed.” Throughout life, I have realized that not much good comes when you think about yourself too much. Being “Other-oriented” is much better for everyone- but also takes some practice.)

“My girls don’t seem to need/want me around.” We raised our girls to be independent and to look to each other as best friends. I’m glad they are able to do that now and I am glad they have each other and have faith, they will come to me when they need me.

“I miss my friends.” My friends are still here. They are texting, calling, sending cards, making meals, visiting, and helping however they can. We may not be hanging out like we used to- but they are with us in new and important ways. AND there are more friends in our lives than I even realized before!

So, I write this today to say, Mark is now hanging on like I was a couple days ago. (Thank goodness we aren’t both in a funky at the same time!)

photo-18

This sitting in the hospital is getting old. He is tired of constant mouth and sinus irritation. He misses our kids activities and wishes so much he could be there with us. This morning, I quoted him during basketball games at half time. “We are nearing the end of this so finish strong. Don’t lay an egg.” 🙂 (The girls on our team have gotten a kick out of his terminology so this brought a smile and little chuckle from him.)

photo-20

Please pray today for him to find good to cling to and focus on. Think about sending him a text, email, card, giving him a call or even coming up for a visit. (No flowers allowed, please.)

I know TONS of people are pulling for him – but sometimes it is helpful for him to see and feel  it personally instead of through what we tell him and show him from pictures, etc.

YOU ALL ARE A BLESSING TO US! THANK YOU!!!

 

 

 

FULL HEARTS

10155566_277382862422752_1896085078921589814_n

Sometimes, we may be running on empty. Sometimes, we may be bored. Sometimes, we may be riding a roller coaster of emotion. But, one thing since the first day we learned of this AML has been constant, and that is, we have FULL HEARTS!

Support 6

Thursday night we got the call. Already phone calls were coming in asking if people could help us with anything around the house, with meals, anything we might need. People were already praying…. In fact, Wednesday, a couple of our pastors came over to pray with us before we actually even knew what was going on. Can you belive, we actually thought this might be stress related?

Support

Friday we went to Colorado Blood Cancer Institute to meet with an Oncologist and we were immediately check in and already a sign up had begun for meals to come to our home to keep our kids fed. A friend dropped $ in my hand our first day in the hospital to make sure I would eat and take care of myself while up here with Mark. Soon, people were also sending and giving gas cards as everyone realized that this trip back and forth to Denver to try to keep some family time would get costly.

Support 5

Within 48 hours, I heard rumors of 2 fundraising events in Colorado and 2 in Ohio.

10176127_10203126897846806_3152064517018928104_n

We have had no idea week to week, what exactly this would look like….However, DAILY people have stepped up and provided for us exactly what was needed day to day- sometimes, without us even knowing WHAT we needed.

photo 3

Some have donated money, some arranged for our carpets to be cleaned, our vents cleaned, dressers were given to our girls as they had out grown the ones they had, toiletries were dropped off to the house, surprise donations of fresh fruit and protein bars, cards…. lots of cards. Lots of messages, inboxes, phone calls, COUNTLESS prayers! Yard work was done, trash picked up…. Some of the best snacks and desserts in the world have been dropped off at our home. AND in our hospital room!

Support 2

Daily, Mark has had visitors come to the hospital which has been very instrumental in him staying so positive, I am sure. It is good to know people miss you and want to see you when you are basically stuck on the 4th floor of a hospital for a month!

Support 4

Gifts…. given at just the right time and being just what is needed to pick spirits up!

photo 2

People showing their support by wearing orange and posting positive things on our Facebook walls. LOTS of people wanting to be tested to see if they are a match for Mark’s stem cell transplant! Our soccer team wore orange socks, a friend’s son chose orange bands on his braces…. We got our toenails painted orange.

Support 7

Some people, who have never met Mark and some who have never met me and the girls, have friended us, have sent money to us, have sent cards…. It’s amazing that people will reach out and help those they barely know in time of need.

photo 1

Really, our hearts are so full they are running over!! Full of LOVE. Full of ENCOURAGEMENT. APPRECIATION. AMAZEMENT! SINCERE GRATITUDE!!

photo-16

THANK YOU!!!! THANK YOU!!!! THANK YOU!!!!

Each of you has been God’s GIFT to us during the most trying time of our lives. THANK YOU!!!!

photo-17

YOU give us courage and strength and we are forever grateful and amazed by you!

Support 1