Tag Archives: journey

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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The Journey Continues…

Yesterday was day 52. Yesterday we got the results from the  FISH test they did on Mark’s bone marrow…. In case you haven’t heard….

That test showed that the translocation of chromosome #11 is not happening. The test showed no MLL and no signs of Leukemia AT ALL!!! (#11 was the one they were most worried about out of the three that were mutating.)

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Mark was pretty much as emotionless as he has seemed all along. He is a rock. I, on the other hand, cried on and off the rest of the day; typical. 🙂

This is EXACTLY what is hoped for when you hit a person with the big guns of chemo, wipe out their immune system and then introduce, new, healthy stem cells! Though we don’t yet have a percentage of how #21’s donor cells are taking over compared to what might be left of Mark’s, we know it must be heading in the right direction because….

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#21, in case you missed it before, is how we refer to our anonymous 21 year old male stem cell donor. We all TRULY hope we can meet him one day and let him know how much we appreciate him!

We are so thankful to God, for the way He has taken care of us this ENTIRE time! We are so thankful for the MANY people who have been like His hands and feet to us through this, taking care of our needs and even wants along the way. It has blessed us IMMENSELY! So much so, that words cannot even describe!

From here, we still need prayer. This journey is still just that, a journey. Mark and I are still living the city life and we still have people scheduled to come out and stay with him so that I can be home with our girls half of every week that he has to stay in Denver.  This was basically our first checkpoint post transplant. WE ARE ETERNALLY GRATEFUL for the results of this one, but, another bone marrow biopsy (Poor Mark- he’s had 4 or is it 5 already now.)will happen again around day 60, then around day 90, another around 6 months and then around 1 year.

Also, currently, with his immune system being suppressed, he has a virus which had been dormant, creep up called CMV. He has been taking anti-viral medication for it and keeping it in check- but it is there.

He also has a UTI- a viral UTI so we have to wait it out and just try to help the symptoms he is having- but we are praying that it passes quickly and without complication.

Lastly, he has had some tenderness and swelling in his abdominal region. They had tried to treat for GVHD and as said above, he is on medication for CMV (two things they think could be causing it) but it is not clearing up and the distention in his mid-section continues to grow to uncomfortable proportions, so, Tuesday this week he will have endoscopies done with biopsies taken to determine what the exact cause of this condition is so they can be sure to treat it correctly.

CMV info- http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514

GVHD info- http://my.clevelandclinic.org/services/bone_marrow_transplantation/hic_graft_vs_host_disease_an_overview_in_bone_marrow_transplant.aspx

What a day! What a weekend! We are planning on continuing our celebration. Yesterday it was just the two of us, but today, we will see some friends and be with three of our girls AND we are having a sleep-over with them at the apartment tonight! (I LOVE, LOVE, LOVE it when we can all be in the same place together!)

We miss and love our Shyanna, but we are extremely happy (and not surprised to report) that she is doing FANTASTIC as a college student and basketball player! 🙂 AND, she is bringing home a few teammates next weekend for a visit ! 🙂

HAPPY TIMES and we are thankful we can share this part of the journey with you!

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