Tag Archives: stem cell transplant

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

 

 

 

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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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.

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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!

 

 

 

 

Where ever you are That’s where you’ll be….

Here, we are. We were just blessed with a four day weekend with Mark at home. Friday, we actually spent half the day in the hospital- and then came home – the day before graduation! AND the day our second daughter turned 17!! <3

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I cannot express with words how good it was and how thankful we were to have him home for graduation- but I believe this picture of our Graduate with her daddy does:

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Sunday, we asked for some time alone with just the six of us after church for the day. We needed that time desperately, and though I feel we need even more, our time is quickly running out.

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Today, Memorial Day is a day we will spend with Mark home again – adding back in his dad, step-mom, mom, sister and nephew. I woke up this morning crying, thinking, “I really wish we could all be home together longer.” However, I will take what I can get and truly am thankful for the time we have.

It’s important to our youngest daughter today that we go down to the park and play basketball today so he can watch her. She misses hearing him yell from the stands at her games, and since he has to go back tomorrow, he won’t be there next weekend to do that. FaceTime is wonderful, but it is not quite the same.

I enjoyed cooking for Mark yesterday- a big ole breakfast, some pasta stuff at lunch and his request for Pot Roast last night. This morning, he has asked for Sausage Gravy over biscuits which we lean red how to make while living in Oklahoma. He has often said to me over the last few weeks, “I don’t think anyone else would have stuck with me all this time through all we have been through.” Our soon to be 22 years together have been spent in Columbus, Ohio. Pryor, Oklahoma. Canton, Ohio. Romeoville, Illinois. Firestone, Colorado.

So, this is the news we have for you and it isn’t exactly what we were hoping but as with everything Mark encounters, he has pointed out what the “good news is”.

Tomorrow morning, we need to go back to the hospital. He will begin a new 5 day regimen of chemo- a bit stronger than the last 7 day treatment as there were still cancer cells found in his last bone marrow biopsy. They told us that out of the space consisting of cells which is about 40% , 40% of that has leukemia in it. So, we need to get rid of it!

This could be a very long process. According to my notes, after this round, there could be a 3-4 week recovery period. There is a 40-50% chance according to doctors of this putting it in remission. Our hope, is of course, that is does and that we have a donor by that time so they can get him ready for transplant with one more round of the kick-butt chemo that will clear out every nook and cranny and get him the transplant. (That is when the 30 days in the hospital and then 100 more days living in Denver would take place.)

When I add all that up- it looks like we are looking at 5 months, with everything happening as we are hoping and praying it will. When you ask Mark, he will tell you, that the good news is we will just go right through this and get it done. Badah boom, Badah bing. Chemo, chemo, transplant, recover, home. Game over.

So, DONOR and REMISSION are our two big prayer requests still- and we thank you for joining us.