Monthly Archives: August 2014

Halfway There!

You may or may not know, but our first goal after transplant is 100 days of healthy! Today is day 47. That means, we are almost halfway there! Many people have been massaging me or calling as I haven’t been updating as frequently, so I thought I better get on it!
Mark has been doing well. He had been labeled “boring- and boring is good” for a while. He isn’t quite as boring these days…. A little bit of Graft V. Host, a CMV virus, and medications he is on being a little hard on his kidneys and liver. So, medications have increased and decreased and he has felt a tiny bit bad most days. But, the HVGD being minimal is a good thing and also means that if cancer tries to rear it’s awful head, the new stem cells will most likely attack it. The CMV is being controlled with medication, but it’s still hanging on and needs to be watched. He’s gone without Tacrolimus (immunosuppresant) and Magnesium for 6 days (including tomorrow) and we are hoping his liver and kidney function numbers are better again by Tuesday. There have been constant changes in medications for a few weeks… And just being on so many medications is a big adjustment for this family who normally does things naturally, without medications.

In the mean time, Mark’s step mom is our second helper that came out to stay with him for a week so that I can be at home with our girls. This marks the first time in over four months that I have been able to be home and just focus on my girls and the things that need to be taken care of around the house. It’s been amazing how much I have been able to accomplish in the past four days! My goals have been pretty simple, I needed to get our home put back together as we had his dad and step-mom here when this all first happened and so beds were added to our basement and some of our entertainment pieces had to be packed away. Then, more recently, Shyanna went off to college and so room changes happened and something had to happen with the things she left behind. The house is looking more put together…it makes me feel good. I have been able to pour my time and attention, otherwise, on the three I have left at home. It’s also made me a little weepy as I realize more being at home that Shyanna isn’t home and I do miss her! (She is doing fabulous at college, by the way! She is loving it! No surprises there! SO happy for her!)

It’s hard on Mark that we are together without him, but it’s honestly been such a long four months for our girls to have to live pretty much without parents. It makes me glad now that at least I am able to be home with them part-time while people come and help take care of Mark. Can you imagine being 13,15,17 and 18 and suddenly, you are left in charge of each other, yourself and a home? I am so proud of our girls!!!! The worst that has happened has been forgetting to take the trash out, a little bleach mishap and a little white-out taking the finishing off our dining table. That’s pretty darn good, if you ask me!

Today, we will have some family time and tomorrow we will, too! Relationships used to be important to me… but now they are even more important. Illness can bring such torcher, heartache and pain, but it can also be a gift in showing you who and what really matters. And, THAT is what really matters.

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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

 

 

 

The Journey- The Climb

Looking back, I cannot help but write this post. As I reflect on the past almost 4 months… I am truly blown away.

Back in March of 2011, I went for a routine female check up requesting my hormone levels be tested as I was experiencing some unusual things and I was also concerned about some lumps I felt in my breast. The lady who examined me said she also came across lumps in my pelvic exam and thought I might have cancer. She immediately scheduled me for a mammogram and a biopsy. I left that office bawling. I called Mark- we were supposed to be going to a Rockies game. He told me to just breathe- he told me I was going to be fine. He gave me hope in that moment and calmed me down so I could drive.

 I got down on my face when I was home and I cried out to God and said, “No matter what happens, I’m still going to love you and follow you and try to bring glory to you through it.” I was truly NOT in control and I knew it. But, I knew no matter what happened, I could trust God. People at my church prayed for me. One lady said out loud in her prayer, “God, you are GOOD and we can TRUST you.” They laid hands on me and asked that the doctor doing the biopsy would say, “I don’t see anything. I don’t know why you are here.”  Which is exactly what happened , but he said he would do the biopsy anyway just to be sure. It came back clear. My mammogram came back fine, too- something like calcium deposits.

Good is good. God is great. Sometimes sounds cliche – especially after saying those words growing up before almost every meal… but it is true- GOD IS GOOD AND HE IS GREAT!

Fast forward to April 14th 2014. Mark missed Shyanna’s soccer game and had been in bed all day since the afternoon before. I had this sense that things were off- but had no idea how off they would actually be. That was Monday; by Friday we were being admitted  to the hospital and told the stay would last at least around 30 days.

I’ve heard numerous stories over the past four months from people about how long it has taken them to get a diagnosis. How long it took them to begin treatment- find the right doctor- get the right plan for their illness. Mark went to the doctor on Wednesday, was diagnosed Thursday and admitted on Friday! That was nothing short of a miracle. I have heard people say that left untreated, AML can take a life in just a couple months. How fortunate we were!

The very night we were admitted, meals were already being brought to our house and signed up for by a community of people we had only known for about 3.5 years.

Throughout this past four months, we have been so cared for and so loved. It has truly been amazing! We are so far away from family and yet God has provided for us extended family to care for us in the day-to-day for such a LONG period of time.

The fundraisers that have been held and the people outside of those fundraisers who continue to bless us financially at just the right time and with just the right amount, cannot be a coincidence!

The people who have come forward to take care of us or of things needing done have been just the right people at just the right time. It’s jaw dropping to think about!

Life can be difficult. Life can be challenging. Life can throw you curve balls and shake you up to your very core. The bottom line is this- and I believe it to be so true.

GOD IS GOOD and WE CAN TRUST HIM.

NO MATTER WHAT.

I have been touched by the people who have called me, written to me, called me, or somehow communicated to me that our story was inspiring them, helping them in their faith walk, or helping them in some other way. I believe those are the very reasons we are called to share with each other and not to try to journey alone.  We were created for relationship with God and with people. We need both.

You think we are inspiring you; you have no idea how much YOU are inspiring us and giving us hope and love and support! I cannot imagine this journey without all of that! I pray for those who don’t have it. It  has become such a passion for me that I will be starting something to help those kinds of people in the near future.

I believe that not only is God good and worthy of our trust, but he always makes something beautiful out of muck, dust, or ash… You just have to be willing to see through the muck, dust and ash sometimes to see that and you have to just be willing to give up control and see where he is taking you and how he will make beautiful things….

I will leave you with some pictures of our recent journey hiking up a 14,000 foot mountain. The journey of life can be so difficult. Sometimes, it’s difficult to the point of wanting to quit! BUT DON’T YOU QUIT!

At the end, you will see the reward. You can look back (or down in the instance of the mountain) and see how far you have come and the beauty that surrounds you that you could not see before and would never get to see had you not made the difficult journey. And then, eventually, it is a part of your life that is in the past, but you will remember and you will have gained experience, knowledge, wisdom and hopefully compassion for others making their journey.

(Mountain climbers, like runner, understand the difficulties of the journey and so they cheer and encourage others on their journey- and it helps especially after they cross the finish line or reach the summit themselves.…)

Enjoy the pictures 🙂

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August 5th – Life with a “Superstar”

This is the first time I think I have picked up my laptop since the last time I posted!

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Life has been busy. I spent the past week trying to get things ready for our oldest to go to college and to get us into and feeling like home in the apartment in Denver. I can confidently say at this point that I think I accomplished both! 🙂 (We still have me and three other young ladies to get school supplies, etc. for, but I don’t think that will take as long.)

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Mark and I are loving the apartment because it’s so much more of a normal feeling when friends come over and can sit on a couch or table and use the restroom and he actually missed my home cooking and has been eating REALLY WELL!  It’s also great to have a bedroom here that the girls can share and we can go to bed knowing they are close and wake up to their sweet faces! But, it’s also a GREAT location! There are so many places to within walking distance and other the the hospital and the forestation being close by, there aren’t really any major disruptions. (I haven’t had a siren wake me up since the first night- but, I adapt to things pretty well.)

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Yesterday, Monday, was our first appointment in the clinic. Normally, for at least the next month, Mark will need to go into clinic Monday, Wednesday and Friday. They draw blood, test his levels and liver, get blood pressure, listen to heart and lungs, take his temperature and give him a good exam to evaluate for Graft v. Host Disease and Infections. I keep a journal each day writing everything down from BP, HR to how his appetite was and how he was feeling in general. I include any concerns we might have- although anything very concerning would mean a phone call to the doctors. As they say, “He can turn on a dime” so close, overprotective watching is what we do right now.

Took him in, with our medication list and our journal. The Dr. told Mark, “You are a superstar patient!” He is on the least amount of medications he could be right now, he isn’t showing any sign of GVHD or infection, and he is eating well, gaining weight and walking around town and being active. 🙂 Hip Hop Hooray- Oh-Hey -Ho! YES!!! This was GREAT to hear!

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Although, we all thought Mark would be in the hospital longer, and so my scheduled “help” isn’t coming until next week, I am still going to be able to get in a couple “last funs of summer” with our girls. Tonight, our second and fourth daughter are coming to stay with Mark and I am taking our first and her bff  and third to hike their first 14’er before the sun comes up tomorrow! Being up in the mountains is one of the most amazing places to be and being up on top of a 14’er and looking out over the world is priceless! Then, Saturday, some of our best friends are coming over to spend the day with Mark and then the girls and I will meet up at Water World for some sun, fun and of course, water! We have two people trained so far to take care of Mark’s CVC line… flushing as well as attaching the magnesium pump. Kevin, one of Mark’s best friends and Tanise, our second oldest daughter. 🙂

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Carmela comes from Oklahoma, early next week. I can’t wait to hug this woman! I love her with all my heart and it’s so awesome of her to come to help us even with a Wedding Ceremony where she and her husband will renew their vows to each other  the very week she leaves to go back home! She and her family are truly amazing and have always been a HUGE blessing to our family!!

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We continue to be eternally grateful for all the friends God has put in our lives who pour into our lives in so many ways! We are in awe of how God seems to have worked miracle after miracle out for us on this journey. I will recap all of that in my next blog! 😉

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Callico