Monthly Archives: May 2014

FANFREAKINGTASTIC!

Our Donor Coordinator just left the room. ALL 4 DONORS ARE 10/10 MATCHES FOR MARK!

THANK YOU GOD!!!!!!

Next step?

Picking the best of the best.

This will now be done by a new doctor as ours has some personal issues and we just found out that he happens to be the one in charge of the group! (And he and Mark get along very well as he has kids close to our kids’ ages and understands the importance of family. He was, after all, the one who let Mark come home for graduation!)

So, ladies and gentlemen, continue to pray that Dr. will have wisdom and discernment in picking the best of the best for Mark and that this round of chemo gets the job done. (Today is day 4/5 and he looks sunburned, but is still eating well, not getting nausea, and is walking (his exercise of one mile per day) well, too!

No pictures needed! HAVE A GREAT DAY! 🙂

Hospital Stay Number 2

We are so very grateful that we were able to have Mark home from Friday afternoon till Tuesday morning. There is just a certain calming affect that having all of us together at home has. AND he got to be at our oldest daughter’s graduation and party and then hang out with loved ones again on Memorial Day! It really was a GREAT weekend!

10269351_10152100359866087_4119624663307004907_n       10302174_10152100359916087_8573737820396696196_n

Here’s what’s happening now. They have donors that look like they potentially could be a match for Mark and THAT is FANTASTIC news! So, we are waiting to here from them (hopefully by the end of this week) as to which one is the best of the best!

Mark is undergoing a second and more “hard core” round of chemo this time and he feels like these dogs have bite and will get ‘er done. He gets a headache and his bones ache with this chemo so he feels like they are doing their job. I am up here again with him as this part makes me nervous. I don’t like the thought of him feeling bad alone.

10320464_10152100359741087_7398710919975194193_n

However, when the chemo isn’t poring into him, he seems to be of good spirits and able to do pretty much all his normal stuff.

He is being given a preventative medicine for nausea, eye drops, a steroid  and tylenol…. And is on a five day regimen of Cytarabine (high dose this time) and Clofarabine.

Chemo is a dangerous thing. Eye drops are to protect his eyes as his chemo can leak out through them. The high dose this time of Cytarabine could affect his Cerebellum so he has to write his name each day to make sure his hand-eye coordination are good.

I wish this were a tumor or something they could cut out, or attack just the area with the measles vaccine or cannibus oil ….The fact of the matter is that his type of AML has no clinical trials running yet and this is all we have. Pray for his body to respond well. Pray for protection over all of his good parts, please and that it just completely annihilates the cancer cells so we can move on quickly to the donor transplant. And, as always, pray that one of these guys who has been a 6/6 match in the preliminaries, will be a 10/10 in the end with the more definitive testing!

Here was the latest message from out Transplant Coordinator:

                                           10376172_10152098861006087_5331110104329370024_n

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

photo-27

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:

photo-29

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.

photo-30

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.

 

 

Donor News

I just copy and paste these emails to keep you updated. Beyond this last email, we have a friend in town named Todd who paid for his own kit at bonemarrowtest.com and has gotten his own results and will be getting them to Joan, our coordinator, for her people to look at and see if he might be a fit for Mark.

Here is the latest email from Joan sent to me on 5-19-14. Please join us in prayer that one of these people Todd, or the other two gents Joan speaks of will be a 10/10 match for Mark! THANK YOU!

“Hi Calico,
It’s always good to hear from you.
So here is your weekly update on the donor status. 5 donors were requested to have further testing done. So far a 25 year old male has been tested on May 15th. We will probably get those results this week. There is also a 21 year old male who will go to his lab for testing tomorrow on the 20th.
The three other donors are all male. Slightly older at 36 years, 38 and 47 years. They have not made appointments to have their blood tested yet.
All we need is one so we’ll see what our 21 and 25 year old look like once we get their results back.

I am going to have Kristi our social worker meet or speak with you and Mark about the housing. Our financial coordinator said the Aetna only pays for housing when the patient lives at least 100 miles away. We have options though so don’t panic. That’s what Kristi will explore with you both.

I understand that Mark must be going stir crazy. Counts continue to be low. Dr. Muffly said that she was going to make sure he was out of the hospital for the graduation no matter.

This is very, very hard for both of you. Hang in there with us. We’re getting closer to our goal.

Best to you sweetie J
Joan”

Be Still….

 

photo-23

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.

photo-24

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.

photo-25

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.

photo-26

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.

Do You Want to Be His Match?

A friend recently took steps to do this and so since many friends and family members have asked, I wanted to pass the info along :

www.bonemarrowtest.com

Ok, go online to bonemarrowtest.com. A day or so later it comes via fed ex. It comes with 3 mouth swabs and return packaging. The cost is $195. Results are 3 to 5 days. Once we get results, we will contact you to find out where to take it. He will also take results to bonfils to get on the national registr. Hope you are having a blessed day!

Our coordinator has said that if people get individual testing done, they can give us the results to give to her. And this seems like the first case of a reliable – though pretty pricey way to get you started if this is on your heart! ❤️

ANC and all that Jazz….

Good morning from Sunny Colorado!

Today is the first day that Mark receives the Neupogen shot to speed up his bone marrow’s ability to produce. He has been stuck at a low ANC level which is becoming a huge bother to him as he so desperately wants out of this place so he can be at the house enjoying family, friends and all of the end of the school year and graduation activities!

So, they find your ANC- or Absolute Neutrophil Count by doing a mathematic equation. (Math gives me a headache.) It involves using counts of his Hemoglobin, Platelets, Hematocrit, and White Blood Cells. This Chemo he went through shut everything down- which is GREAT! But, everything needs to come back so he can live without being in the hospital bubble for a while.

photo-21

So, we are extremely hopeful to have him home sometime within the next week and that is putting smiles on all of our faces!

Yes, he still needs a transplant, and yes, we still need another bone marrow biopsy to be sure he is in remission, but to give him a break from the hospital life would be an incredible gift!!!!

 

 

The Latest Donor News

The following was the email I got today from our coordinator!

“Just a little update that I heard that two donors that we requested for further testing are scheduled in their labs ( wherever that might be). Remember we don’t know where they’re from. So that’s good that they are scheduled. Once they do have the blood drawn then it is sent here to Denver to compare to Marks.

So things are moving along J

I’ll continue to keep you posted as I get news on more donors.”

Praying for that 10/10 match for MARKY MARK! 🙂

Praying