Monthly Archives: April 2014

The Truth Is, This Is Hard

Ok, so the whirlwind is over.

We know what he has, we know why he was so sick super fast.

We know what needs to happen and now we wait.

This is hard … for him, for me, for our girls, for anyone who knows and loves or cares about any of us.

We all want to do something. We all want to help. We all wish this was a bad dream.

This is where I am torn. I want to keep everyone up-to-date. I want everyone to pray. I want someone to be a perfect match for him so he can get better! But, I miss so much our normal  life. I want it back.

This life isn’t normal for us at all. We are a family unit. We hang out all together a LOT. We are big on being at each other’s events, games, moments, etc. We always have each other’s backs. We are a family who all sit around our table and eat dinner together at night- whether that means 4pm or 8pm according to events happening that day.

We understand each other. Shyanna, Nikayta and I are introverted to the point that sometimes we just have to say, “ENOUGH. I don’t want to be around any people.” Tanise, Mark and Cadence seem to get energized from people. But, we all enjoy our space and the ability to live life the way we feel like living. I miss sitting in the sun absorbing as many rays as possible all alone in the quiet stillness. I’m sure the girls miss mom and dad being home.We miss our cuddles and movie times and the ability to look forward to the plans we had and have and feel happy and free.

The plans…. the celebration cruise we just cancelled. Thank God they are giving us our money back as Shyanna will need a car for her 4-5 hour road trip to college this fall. Graduation planning. Yeah, that’s still happening, but it isn’t looking quite the way we had planned. I want to be there and be excited for her… but it’s hard for her to be excited right now. I get it. But, I hate it. She was too tense to audition for the Commencement speech and you know what? It was a GREAT speech that she wrote! This makes me sad. As a parent, you don’t want your kids to be stressed.

And it isn’t just her…. it’s my other daughters, too. Going to school and trying to finish strong and keep their heads up while they worry and miss Mark and I …. And it’s Mark. Look at him laying in bed. I see him staying positive and making us all laugh and I think, “How is he able to keep this up?” Then I see the tears break way as he, too, is wishing he could be there. When he tells me he wants this event to be as normal as it can be. He doesn’t want them to bring up him having Leukemia and it is because, he, like me, wishes that our girls would be able to have what they are used to right now. He wishes they could have that normal, happy, celebrating life.

So many questions and concerns from everywhere and we are learning to live more in the moment. Our thoughts cannot really go beyond who is the match and let’s be in remission right now. It’s just too much and so far out of our control.  The doctors keep saying, “Focus on what you can control.” And we are trying. Exercise, Food,  Hygeine. I believe we also can control our attitudes but I would be lying if I said that sometimes, that is hard! It is a little harder I think when you are locked up all day and night within the walls of a hospital room and an oval hallway.

We continue to be thankful for love and support. Some of it is constant and unchanging which means so much- some of it is not as consistent and that is ok because we know everyone has their own life. Some people have been completely no where on the radar and you know they care- but it must be hard for all of you, too. Everyone handles everything in their own way. It is hard on everyone.

So, for now, I feel my job is to continue to be as “real” as possible. I have been crying almost all morning off and on. Now, I write. I will go run steps and do some pushups and that will help, I will get dressed and put on some make up and do my hair. That will help. But, the reality is that we are very helpless right now. We are relying on God and others.  And, we are trying to control what we can and to make this time as normal as we can for our family…. but the truth is, we don’t even know what that is right now.

Living in the moment.

Remission/ Donor. We need both. Space and love. We need both. Hugs and prayers. We need both. Understanding and Wisdom. We need both.

This is me being real. This is how I feel today. I’m sorry if  it upsets anyone. But, I was told to be real…. and that’s what I am trying to be.

PS- Mark wanted to make sure people knew that he is not allowed to have flowers (unless they are balloon flowers) because of the spores, etc. THANK YOU!

 

 

 

Some Answers April 28, 2014

Today we met with our coordinator. She is a very nice and thorough lady. Spent about an hour and a half with us discussing the stem cell transplant. She hugged us before she left. 🙂

Q & A

Colorado Blood Cancer Institute focusses only on blood cancers and so far, they have done as much for us as we could have hoped. They take great care of Mark and have done so in very timely manners, they make us comfortable, have long conversations, are available 24/7 to answer our questions as they come up and set up meetings where we can take our time and really discuss all of this. Though it is all new for us-they have a lot of experience!

So we got answers to some questions today:

1. What are the odds of the stem cell transplant taking the first time? What is the average rejection rate of host v. graph?

Excellent, looking for a perfect match. With Sibling –  50%. With unrelated-60-70%. If it is a mismatch 9/10 instead of 10/10, 90% or greater.

2. What are side effects/problems?

Three most common are:

1. Infection, 2. Graph v. host disease 3. Relapse – most likely within 1st year. DNA makes this more likely. (Mark falls into this higher risk category and we are praying this doesn’t happen).

Graph v. Host Disease has different levels- and can turn up in thirds. A third of the time-Minimal-feel like a sunburn, skin sensitivity, rash. A third of the time –  Medium-GI tract nausea, vomiting, diarrhea, skin issues, dry eyes. A third of the time – Severe-Gut, losing liters of fluid at a time.

All of these, under close supervision, can be helped or progression even stopped.

3. What is the process before?

High Dose Chemo Prep Regimen to get into every nook and cranny and clean house of any and all cancer cells. Must be in Complete Remission to do stem cell transplant. Best chance for a cure or a long-term remission. The goal is cure.

4. Why stem cell over bone marrow transplant?

It is safer process for donor. Collect peripheral blood after giving a medication to help marrow push it out into stream. Then it is like dialysis, circulating and taking only stem cells out and then giving the donor back the rest.

5. Does donor need to come to Denver?

Yes.

6. Since it is a blood test to evaluate proteins  HLA (Human Leukocyte Antigens) can people who want to be tested? Or do they have to go through International Bone Marrow – Bethematch.org?

You can be tested, but will be charged if you don’t go through Bethematch.org, If you get tested through them, you can be put on a list to possibly help someone live in the future.

7. How long does it take to find a match through data base? Is Mark typed? Percentage of chances? When will Wendy be decided on?

They are almost done typing Mark and as soon as he is typed they will be searching. We should know something about both his sibling match and the donor registry within the next two weeks. 25% chance with Wendy and an 80% chance of finding a match through the database.

8.Can you use his own stem cells?

No, the nature of his leukemia, he needs to be starting fresh with a clean slate. They cannot use what he has.

9. Do you take on traits of the person who donates?

No. Other than if a female donates, eventually, his DNA will read that HE is a normal female. Also, his blood type will change to donor type eventually if it is not the same as his.

10. What happens after transplant?

Plan on being in hospital about another month. After, housing has to be within 30 minutes of the hospital for about 3 months. (they are currently looking into our insurance and available options for us). He will need a 24 hour a day care-giver as well. This can be more than one person. Shifts can be taken daily, weekly, etc. He will be given a list of things he can do and things he cannot. The caregiver will be cooking, shopping, driving and making sure he takes his medication and just be hanging around to make sure he is OK. One of these people will be Callico, for sure.

In the beginning, he will be seen about 3 times a week. That number will change as he progresses and they are certain he is doing well.

11. Are donors and host tested before ? How?

Many tests occur. Both, need to be as healthy as possible. Mark will even have to do to the dentist…. Poor Mark. He doesn’t like the dentist! Tests for health and physical as well as HIV and other viruses, infections, etc., are completed.

12. How long for him to recover after stem cell transplant?

6 months to a year.

13. Why are other family members not likely to be a match but strangers from around the world can be?

She said to talk to the doctor about this which we already have. It’s strange to think that a stranger could have more in common with you genetically than a child, parent or cousin-but for some reason, it is. I still don’t get it!

Now YOU know what we know.

Thank you for your continued love, support and prayers! This is going to be a long road…. We hope you stay with us.

 

 

 

 

 

Here I Am

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I’m probably just gonna ramble. I feel better when I write.
I have no answers – only questions in my mind.
There is no easy way of making troubles light.
But there is an easier way of taking on the fight.
I remember I don’t stand alone, I don’t sit, I don’t breathe… I am surrounded by armies of angels and they are all around me.
It isn’t even them I feel, at least I don’t think so. It is the presence of my Lord, His loving strength encapsulates me.
Here I am, His strength comes to me through people who walk on this earth by my side.
Here I am, His love comes pouring out from many helping hands.
Here I am, His hands are wiping my tears with the hugs and embraces I feel.
Here I am, His hope it filling my life as I see every need being met.
Here I am and I call on the Great I AM, He is God, I am not, I won’t pretend.
Here He is through it all and I have learned I can call on Him time and time again.

Here I am.

April 26, 2014 – Results Are In

Well, we have been waiting for this day for about eight days…. results from the bone marrow biopsy.

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Science is amazing. They actually can get to a chromosomal level to investigate how the DNA is working.

What they discovered today is that Mark’s chromosomes are malfunctioning in 3 ways. This means he has Poor Risk Acute Myeloid Leukemia with Complex Karyotypes. My translation– “Stupid Stubborn Leukemia”.

Chemotherapy alone is not a very good option for this type of Leukemia. The cancer cells can actually figure out how to get around the chemo and keep surviving so just trying to stay in remission using chemo is not the best solution.

The plan of action is to use a stem cell transplant after getting him into remission. The best option is a sibling. We are so glad he has one! They will test his sister, Wendy’s blood next week to see if she is a match. We pray that she is!! Currently, they have Mark typed and have already begun searching the registry to see if someone out there who is on it is a possible match.

With a stem cell match and transplant, there is a 60% chance Mark can beat this! It doubles the odds of chemo alone. Mark has been saying all along that he never had really high grades, so he feels confident that such a number falls right in line with what has always worked for him. (Yes, we are still keeping our sense of humor .)

Please pray that Wendy is a match. We meet with the education person about this early next week and we already have a pretty big list of questions. Monday, we will also get answers about spinal fluid they took on Friday and whether or not cancer cells were found.

We know the numbers and data and we are focussing on something much bigger than any of that. HOPE. GOD. HEALING. MIRACLES. And of course, Mark’s COMPETITIVE INSTINCT and POSITIVE ATTITUDE…. One that in any negative situation I have ever seen him finds a way to say , “Well the good thing is…..”

Today, he said the good thing is that we have a way of doubling the odds and we have  whatever time we have left to really make the most of it.

I say we never know exactly how much time any of us has, so we should make the most of EVERY day. My thoughts since we have been in here have been that every person we encounter is truly facing some sort of battle and it should be our job to try and be the most loving, kind and positive person we can be in their lives for any amount of time we have with any of them, no matter if it is as we pass by in the hallway or get to spend an entire day together.

A few people have asked me about helping Mark and potentially being a donor if he needs one. We are forever grateful to be surrounded by such loving and giving people! I will find out more for you, I promise, but as far as I can tell, finding out if you are a match for stem cells for him is a simple blood test. I will keep you posted.

Callico

 

 

 

April 24, 2014

We are as friendly as possible and we try to make jokes and laugh a lot, because that is how we live. Right now, we just live differently.

So, this morning, I was looking at the dry-erase board where nurses write their name and the date and day each shift. I noticed that it said, “Preferred name” I thought to myself…. “WHY NOT!?”

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I have a notebook that I both take notes when doctors come in daily to talk to us and write questions I (we) have about this thing they call AML.

Today, we await the doctor. Mark has a lumbar puncture later today. Yesterday we asked the doctor which subtype of AML she was leaning toward with what they know so far based on blood and other symptoms, etc. She said Monocytic. I had already read about this type. For some reason, it was written in my notes from the first phone call I received about his blood results. (Our doctor says she never mentioned that as she wouldn’t have known just from the blood work and everyone else tells me it would have been too early at that point to know based on the tests run.) But, I have it written down none-the-less and I looked up information about it because of that.

Anyway, since I had already researched it, I asked for them to do the lumbar puncture spinal fluid test sooner rather than waiting to be sure with results from bone marrow coming in next week. Sometimes, the AML cells can be in the Central Nervous System with the Monocytic sub-type of AML. THAT is what we pray against today.

Thank you for joining us in that prayer today!

April 23 2014

What a whirlwind it’s been! Wednesday, he had blood drawn, Thursday evening, we found out that Mark has AML Acute Myeloid Leukemia, Friday we were seen by an Oncologist at Colorado Blood Cancer Institute and immediately checked in to Presbyterian St. Luke, in Denver. The illness became apparent very quickly which is typical of this disease. We were blessed to have a group so close to home that specializes in this and knew the importance of not wasting any time!

Friday, the tests began just about as soon as he was checked into his room. Echo-cardiogram, chest cavity x-ray, nasal wash, bone marrow and bone biopsy. He was given 3 bags of blood and hooked up to IV as his platelet, red blood cell and hydration levels were all extremely low.

Saturday, he felt like a new man, and thought he felt like he could go home (as he told everyone visiting him that day) he knew with this new AML diagnosis, he could not.

Saturday evening, the pic line was put in and around 2am, he was able to begin receiving Chemotherapy – Idanubicin and Cytarabine. Ida for 3 days over the course of a couple hours and Cytarabine as a constant drip over the course of course of seven days.

Sunday, we shaved his head – or tried to. His hair was too thick for the touch up trimmers the hospital had. It is inevitable, he will lose his hair in the next couple weeks due to chemo. Why wait?

Mark has been that way since he found out he had AML. Why wait? “Let’s get er done. Start the biopsies, begin the chemo. The longer it takes to start, the longer it takes for me to get out of here.”

So, Monday, in came the barber to touch up his new hair and he truly looks like the soldier he is going into fight this battle.

Mark Hair

Tuesday, one of the doctors came in to tell us that he was already cancer free…. we don’t know why she told us that because, as it turns out, he is not yet rid of all the cells although the chemo is working and they are decreasing…. But, we were happy to have some time of celebration and a refreshing walk out in the fresh air and sunshine without being tied down to anything!

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Today we met with his oncologist again and we asked some tough questions.

The reality has hit. This is not just a fight –  it is a battle.

A bone marrow donation is a true possibility.

We will fight this battle head on and we will pray for God to heal. We know that it is possible that he may not be able to go see our oldest daughter graduate on May 24th and we need to cancel our cruise set for June. But, we will do what it takes and put our hope in Jesus as we go. So far, all of our needs have been met and we know we are surrounded by love and support. For that, we are extremely grateful!