A Transplant for the Cure - Moving Forward

Karen Luehrman is preparing to receive her first pre-transplant
chemotherapy treatment at the University of Kansas Cancer Center.

Last week I received an email from Nurse Ellen Maxwell with the heading, "Moving Forward". It said that Karen's stem cell transplant is scheduled for November 17th. This is the third transplant date that has been set since the end of May.
 The first transplant date was postponed because Karen's CLL  changed into prolymphocytic leukemia and she had to take a three-month course of Campath. The second proposed transplant date was postponed because of a systemic fungal infection.

It looks like the transplant is going to happen this time. I flew from Houston to Kansas City yesterday. Karen and I reported to the University of Kansas Cancer Clinic at 8:00am today. Karen already has a tri-line in her chest, so the nurse started an IV with fluids as soon as we entered the office. She then started the first pre-transplant chemotherapy treatment. The treatment took about 30 minutes. I didn't even know she was getting the chemotherapy until it was all over. A pharmacist came in and talked to Karen about the medications she would be taking over the next week. Karen left the building with two large bags full of prescription medicines.



I was getting my first two Neupogen shots.

As the stem cell donor, I am required to take two shots of Neupogen for four days in a row. My first shots were today. I did not know the shots would be given in my stomach. This was an unpleasant surprise. The nurse said she had to give me two separate shots because the dose was too large to be absorbed in one place. The nurse grabbed my stomach fat, and stabbed me with a large needle. The first shot seemed like it would last forever, and I felt a burning sensation as the substance entered my body. The second shot did not last as long and the burning was not as severe. I felt a little dizzy after the shots, but that might have just been anxiety from seeing those long needles.

The pharmacist was talking to Karen about her medications. 

 Neupogen (Filgrastim) is used to increase the number of stem cells in the blood before collection for use in stem cell transplantation. I was only given a limited amount of information about the possible side effects of this drug. I was told I might suffer from some bone and joint pain or possible headaches. I was NOT told that the use of Neupogen could result in serious allergic reactions (including a rash over the whole body, shortness of breath, wheezing, dizziness, swelling around the mouth or eyes, fast pulse, and sweating), ruptured spleen (sometimes resulting in death) and an assortment of other ailments. The long-term effects are not known. (Source: Wikipedia)

I agreed to be a stem cell donor because my sister has a terminal disease and a transplant is the only hope for a cure. At the age of 62, I hope that my good health will not be compromised by the transplant procedure. Most stem cell donors are many years younger than I am, but an exact match is hard to come by.

It may seem like I have a wimpy attitude and I just need to suck it up. The fact is, I live a very sheltered life. My sweet husband protects me from all the problems of the world and my life consists of doing art, crafts, reading, and walking with my dogs. I can honestly say, I have no problems after seeing dozens of leukemia and lymphoma patients come to the clinic seeking radical bone marrow transplants.

Karen and I are staying with our youngest sister, Lois Crane, during the preliminary treatments. Today was Lois' birthday! I appreciate her hospitality and hope we can do a little more birthday celebrating tomorrow.

Tomorrow will be another day of chemotherapy for Karen and Neupogen shots for me.  Sweet dreams.

A Transplant for the Cure - A Bump in the Road

Janette Luehrman Fuller and Karen Luehrman at the
University of Kansas Cancer Center.

The Cancer Treatment Center of America in Tulsa was an awesome place, but the treatment that Karen received there did not result in remission. Her doctor said she needed a stem cell transplant.

A medical professional shared an analogy about how chronic lymphocytic leukemia works that really stuck with me. She told us to imagine a movie theater shooter. A deranged person goes into a dark movie theater and starts randomly shooting. Many movie viewers are caught off-guard and are killed. However, some run out into the lobby, some hide under the seat and some play dead. They stay hidden until it is safe to come out. I know this is distasteful imagery, but she said this is how the cancer cells survive repeated chemotherapy treatments. The cancer cells will go into hiding, but they will not be permanently destroyed.

Karen's health insurance would not cover a transplant at the Cancer Treatment Center of America, so she was referred to the University of Kansas Cancer Center. She had her first appointment at the bone marrow clinic in April, 2015. Since she already had a donor (that would be me), things moved along pretty fast.

The date of May 29 was set for a stem cell transplant at the KU Hospital. I was given the following pre-transplant tests:

• A chest x-ray.
• Blood tests.
• EKG.
• Consultation and consent.

My tests were all acceptable and I signed the required paperwork (I will share more about this in a later post). The only thing we were waiting for was the results of Karen's bone marrow biopsy.

Karen posted the following message about the results of her bone marrow biopsy on Facebook dated May 18.

Ok, time for an update. I was scheduled to go in the hospital this Saturday to start the pre-transplant procedures and have the transplant on Friday, May 29. All of that has been POSTPONED! I consider this good news.
I was called this morning to come in to see the doctor about the results of my bone morrow biopsy last Wednesday. I had a biopsy 4 weeks ago in Tulsa. In just 4 weeks, the results changed from being CLL/SLL to PLL( Prolymphocytic leukemia), a more active, aggressive form of lymphocytic leukemia. I consider this good news because it was caught early and a treatment plan of using a monoclonal antibody (not a chemo drug) that targets the lymphocyte cells will be started this Wednesday. I will have to go up for shots 3x a week for 4 weeks and then do another biopsy. When it is in remission, the transplant can be done which is still a possible cure.

So, thank you to all who have volunteer to help me. It looks like now it may be around the middle of July before I need to reschedule people. Watch for updates!
I am still standing on the Word of God ( Is 53:5 and 1 Peter 2:24) that through the atonement on the cross, Jesus bore my sickness and disease and by His stripes I am healed. It doesn't matter how many doctor's reports I get to the contrary, that does not change what Jesus has already done for me. Through Heb 11:1 and Mark 11:23 faith, I will hold on to these precious promises to see them come to pass.
Blessings!

I had my airline ticket purchased and was ready for the trip from Houston to Kansas City when I received this news. I cancelled the tickets and waited.