A Transplant for the Cure - DIY IV Treatments and a Blood Clot

A home health nurse is teaching Karen how to administer
the IV treatments for her fungal infection.

Karen and I drove into Higginsville on Thursday morning, October 22nd. It was a beautiful autumn day in central Missouri. We stopped at Confederate Memorial Park on the way home and I took some photos of the fall foliage in the park. (See the video at the end of this post.)

That afternoon a home health nurse came to the house to teach Karen how to administer the IV treatments with the tri-line that had been surgically inserted in Karen's chest. The IV treatments were necessary to fight the fungal infection in her lung. (Later tests showed that the infection in Karen's lung was viral, not fungal. However, the blood work showed signs of a systemic fungal infection so the daily anti-fungal treatments were still required.)

Karen posted the following message on Facebook with this picture on October 22nd;

Most of the summer I had to give myself shots in the stomach for a blood clot. Now I have graduated to giving myself IV treatments at home. This is the new little toy I get to play with for the next week and a half.

Since the stem cell transplant had been postponed indefinitely, I decided to fly back home to Houston the next day. The weatherman in Houston was predicting storms for the weekend, so I wanted to beat the rain.

The next few days were not very good for Karen. She started running a fever and experienced severe pain in her neck. She had to make several unplanned trips back to the Bone Marrow Transplant Clinic for treatment. She posted the following message on Facebook on October 26;

My adventure continues. Saturday afternoon I began to run a temperature and feel chilled. The preceding Tuesday I had received a tri-line catheter in my chest and on Wednesday, I had an endoscopy done of my right lung to check out something they saw on the CT. Thursday, the right side of my neck began to be very sore. By Saturday, when I cough, it produced a sharp pain in the right side of my neck. I called the clinic Saturday night and was advised to come in on Sunday morning. We ended up being there all day. They took a number of blood cultures, and ordered an ultrasound of my neck. Sure enough as they expected, there is a large blood clot in my juggler vein due to the line being placed. They gave me a shot of antibiotic and a new round of blood thinners.

So, now I am back to giving myself a shot in the belly twice a day and that iv antifungal medication for the lung infection.
It is now Monday morning and I did get a good nights sleep and feel some better with the aid of extra strength Tylenol to take the edge off the pain in my neck when I cough, which has not happed much yet this morning - YEA! Have to go back to the clinic today and tomorrow. That's it for now.

We are now waiting for the doctors to set a  date for the stem cell transplant. We are very optimistic that this procedure will give Karen's immune system the boost it needs to defeat the chronic lymphocytic leukemia in her body.

Karen posted the following message on Facebook on October 30th;

From my doctors appointment yesterday, I found out it will be the middle of November before we can reschedule the transplant. Need 4 weeks of treatment for fungus among us, and then try again. Will do another CT next Wednesday to check on lung issue. Still cough some, sometimes better but definitely not worse. Even though they will not let me get out and play in the dirt, which is my favorite thing to do, I can enjoy cutting up peppers for winedrizzles that I grew in my garden this summer.
They tell me because of the Campath, my B and T cells are low and they are the ones that mostly fight viruses and fungus so I guess that is why I have had lingering cold symptoms all summer.

 

A Transplant For The Cure - Super Woman

Karen's Campath treatments ended the last week of August. She was still feeling healthy, energetic and optimistic. She could work circles around most people half her age. She posted this photo on Facebook on August 15th with the following message:

It's amazing what one can accomplish with a weed eater and a corn knife:-).

She had spent the entire day cutting grass along the driveway and even along the county road in front of our mother's farm.

One of her Facebook friends posted;

Karen is super woman!

Karen posted the following reply to the many comments she was getting from her Facebook friends;

Thank you everyone for the compliments but I must pass them on to my Lord and Savior Jesus Christ. God is always good and has already provided everything I need for life and godliness. I still have 9 chemo (Campath) treatments to go. I have been exercising the God kind of faith by believing I received my healing when I prayed and my heart faith (which over comes the world) reaches out each day to receive health and healing in my body every day. I can do these things through Christ who strengthens me and be a vessel for the blessings of God to flow through to others. Glory be to God!

Karen was feeling so good from the Campath/steroids treatments that she was reconsidering her decision about having a stem cell transplant. She believed that God was restoring her health and she hoped to manage the disease and continue to live an active lifestyle.

A follow-up bone marrow biopsy was done at the University of Kansas Cancer Center on August 31. Karen received the results of the biopsy on September 10. This is her Facebook post about the biopsy results;

Here are the results of my latest bone morrow biopsy: NEGATIVE for Prolymphocytic leukemia. Another words, the aggressive form of lymphocytes are all gone!!!
The chromosome analysis shows only one abnormal metaphase as opposed to three previously. They say the clinical significance of this is unclear so they say it is suspicious for a low level of residual disease.
Blood counts continue to come back up and the blood culture showed no bacterial infections in my body.

That was the doctors report. He did admit it was a good report as he walked out the door.

Karen was in remission for the third time. She told her doctors at the Bone Marrow Transplant Clinic that she had reconsidered her decision to have a transplant so they referred her to an oncologist who would help her manage and control the disease. She had been off the steroids for a month and her energy level and overall heath had significantly declined. She had one appointment with this new doctor and posted the following message on Facebook the same day (October 4);

This is the sign at the entrance to the Bone Marrow
Transplant Office (BMT) at the University of Kansas
Cancer Clinic.

Hello FB friends and family. My last report was good. I have decided to go on with stem cell transplant for the cure. I do not know the exact time frame yet but expect to be admitted to KU hospital 3rd or 4th week in Oct. I will be in hospital approx. 3 weeks. Then I have to stay within 30 minutes of the hospital for 100 days. I will make plans to stay at Hope House in downtown KC during that time but I must have one care giver there with me 24 hours a day who can drive. The tentative time frame looks like
from the middle of Nov. to early March that I will need help. Message me or call me if you have some availability and would like to help. Thanks.

The new doctor emphasized that a stem cell transplant is the only hope for a cure. Karen had a familial donor who was an exact match and health insurance that would pay for the procedure. These are advantages that many people who are living with chronic lymphocytic leukemia do not have.

The date for the second attempt at a stem cell transplant was set for October 29. As the donor, I was on high alert and made plans to return to Kansas City

A Transplant for the Cure - A Campath Summer

Karen Luehrman and her great niece, Kaley Thomas.

Karen was happy to learn that there was a treatment available for her prolymphocytic leukemia that would carry her through the busy summer months on the farm. She was not looking forward to the long, difficult recovery period that is required of a stem cell transplant.

Karen posted the following message on Facebook on June 1, 2015. She continued to depend on the healing power of Jesus Christ.


Had the first full dose injection of Campath today. All is going well with a few extra drugs. The doctors are doing their best with their knowledge.
The truth is Prov. 4:22 "for my Words are medicine to those who find them and health to all their flesh". I Peter 2:24 "Jesus Himself bore our sins in His own body on the tree, that we, having died to sins, might live for righteousness - by whose stripes you were healed". Matt. 8:17 "Jesus Himself took our infirmities and bore our sicknesses." Healing is God's will for me. As I keep His Word before my eyes and in my heart, the force of faith is rising up from my spirit man bringing life and healing and restoration to every cell of my body. Prolymphocytic leukemia is just a name that has to bow its knee to the Name of Jesus. God sent His Word to heal me and I receive it daily.

Campath (alemtuzumab) is a monoclonal antibody that binds to CD52, a protein present on the surface of mature lymphocytes, but not on the stem cells from which these lymphocytes are derived. After treatment with alemtuzumab, these CD52-bearing lymphocytes are targeted for destruction. (Source; Wikipedia)

Karen drove over 100 miles (round-trip) on Monday, Wednesday and Friday of each week to receive her Campath treatment at the University of Kansas Cancer Center. She also received a strong steroid drug to reduce the side effects of the Campath. The combination of the Campath and the steroid drug made her feel incredibly healthy and energetic.

Karen Luehrman on one of her many fishing trips
during the summer.

Karen spent the summer gardening, doing lawn work, fishing and cooking for a friend who owned a wine drizzle business. She was doing everything that she had hoped to do when she moved back to the farm a year earlier.

During the last week of June, Karen attended the Believers Convention in Fort Worth, Texas. She traveled with a group of her friends and had a wonderful time. She posted the following message on Facebook on July 10. 

Ok friends and family. I am back from an amazing week at the Believers Convention in Ft. Worth. I loved every second of it.
Before I went, I had completed the 4 week Campath injections and on Tues, July 7, went back for a follow up bone morrow biopsy. The biopsy I had 6 weeks ago showed 70% of my lymphocytes were cancerous and had changed from chronic state to prolymphocytic, which means they were now more aggressive.
Tuesdays results show now that only 1% of the lymphocytes are cancerous. The doctor called it a good report but stopped short of calling it a miracle, which it actually is. The Word of God has been working mightily in me because the Spirit of Life in Christ Jesus has set me free from the law of sin and death and redeemed me from the curse of sickness and disease. I have had 12 treatments; the doctors want me to take the remaining 24 that will put it in remission (from the doctors stand point). I have more questions for next week but praise God for the progress we have made. Halleluiah!

My daughter, her children and I decided to drive up to Missouri from Houston, Texas, to visit Karen and my mother during the last week in July. The following video features Karen's large garden that she planted and cared for. This was a tremendous amount of work, but Karen was up to the challenge.



This video shows how Karen showed her great-nieces a good time on the four-wheeler. We also had fun at the park.

 

 

 

 

 

The Campath treatments ended in August and a decision would have to be made about a stem cell transplant....or not.