Nancy’s Story

Site created on August 20, 2019

On January 15, 2018, Nancy was diagnosed with Chronic Myeloid Leukemia (CML), a rare but well-studied form of leukemia which is treatable by oral chemotherapy. After an initial week in the hospital, followed by twice-a-week visits to the cancer clinic here in Cumberland, a particular chemotherapy drug was chosen, which worked well throughout most of 2018, with her cancer marker numbers heading downward. Our doctor and we were most encouraged.  In late December it seemed that the drug was no longer working.  In late January a follow up test confirmed this to be the case, A second available chemo drug was chosen, and after a month of jockeying with our insurance company, it was finally approved.  After a short time it too seemed not to be working. We were due to consult with our cancer doctor at the cancer clinic the afternoon of April 29 of this year, but that morning Nancy had severe chest pains and so we went to the emergency room, fearful she was having a heart attack.  The heart tests all came back negative, but a blood revealed that Nancy was having a "Blast Crisis." This happens in only 2% of CML patients, in which the leukemia suddenly transforms into one of two Acute Leukemias.  Of that 2%, only 1/3 becomes Acute Lymphoblastic Leukemia (ALL) - the more dangerous - and that is what Nancy had.  Her body suddenly began to overproduce defective white blood cells which overfilled her pancreas and pressed on her diaphragm, giving the severe chest pains.  Her doctor immediately transferred her to a specialist in Morgantown, WV, and that evening Nancy was taken by ambulance to the Bone Marrow Transplant Unit (BMTU) at Ruby Memorial Hospital.  For the next three weeks she was given intensive IV chemotherapy and then sent home to recover, with twice-a-week followup visits at the cancer clinic in Morgantown.  In early June she went back for another week of IV chemotherapy, and then again the last week in June.  By that time the chemo had done its work, and the ALL was in remission, and a third oral chemo was keeping her CML in check, so the doctors began to plan for a bone marrow transplant.  Initially it was hoped one of her brothers would be a match, but unfortunately, none was.   They did discover a "perfect" match with an unrelated 29 year old adult.  Nancy entered the hospital on August 9 for placement of a Hickman port in her upper chest and for a week of pre-transplant chemotherapy, and on August 16, 4.6 million stem cells from her donor were infused into her body in only 10 minutes (the staff had warned us that the transplant itself would be anticlimactic to all the rigorous preparation).  Because these stem cells give Nancy a new lease on life, with whole new blood and even new DNA (that of her donor), the medical staff refers to the transplant day as her new birthday, so now Nancy gets to celebrate two birthdays every year (March 30 and August 16).


Right now Nancy has no immunity. She will remain in the BMTU until her new cells get implanted and begin to produce new blood cells, which is expected on transplant day + 11 (her treatment is measured by how many days since transplant).  The two greatest dangers are infection (since she has not natural immunity) and Graft Versus Host Disease (GVHD), which occurs when her new cells detect her old cells and the two go to war with one another. To prevent the first Nancy is on daily antibiotics, antivirals and antifungals.  When she is released from BMTU, she will be required to live at Family House in a tiny studio apartment for 100 days, during which time she will have daily monitoring at the Cancer Clinic, and her temperature monitored every 4 hours, so that at the first sign of infection she can be at the hospital receiving IV antibiotics within 30 minutes of detecting the infection.  To prevent GVHD, Nancy is on both IV and oral immuno suppression drugs.


Today, August 22, is Day +6, and by God's grace, the medical staff's expertise and care, and the prayers of many, many people all over the world, Nancy is doing very well, according to her doctor.  She has minimal nausea and no other apparent negative side effects to the transplant. The man in the next room to Nancy had his transplant the day before hers, and he is suffering horribly with intense pain and a number of difficult side effects.  We are humbled by God's mercy and care to Nancy and to us. His love to us through his Son Jesus, and through the prayers of His people, is very precious.  We have been deluged with generous gifts of food and of finances to help with our expenses; Faith PCA has given Lee paid medical leave for the rest of the year in order to care for Nancy; several church friends and family have volunteered to assist Lee in serving as  caregivers for Nancy (she has to be accompanied 24/7).  Nancy is not "out of the woods" yet by any means; infections can crop up at any time, and GVHD can occur even a year after transplant, so we have to be careful and vigilant.  Thank you for your interest in Nancy in reading her story, and for your prayers on her behalf.  We wish we could thank each one of your personally. God knows who you are, and we pray that you might experience his loving care, even as we have.
Love,
Lee and Nancy

Newest Update

Journal entry by Nancy Capper

The past month has been an arduous journey, for which we have very much been dependent upon your prayers. Nancy wound up being in the hospital for nine days with the c diff infection, during which time she was severely weakened. When we returned home, Lee was able to help her slowly step up the first flight of stairs to get to our yard, but she had to crawl up the final flight of steps to our porch, and once inside collapsed on the floor for a half hour, until she had to crawl up the next flight of steps to our second floor with the bedroom and bathroom. Recovery of appetite, health, and energy has been very slow. We have had home health nurses, physical therapists and occupational therapists, all of whom have been very helpful, and Nancy is just now starting to regain strength and appetite. She was able to attend worship this past Lord's Day for the first time, but it wiped her out for the rest of the day. Being so weak confronted us with the reality that our house is not user-friendly for the weak, with laundry in the basement, kitchen on floor one and bedroom and bathroom on floor two, with access to the street dependent on two flights of stairs. With both of us getting older, it has made us realize that we either need to put on a first-floor addition with a bathroom and small bedroom, or else move to a new house with bathroom, bedroom, kitchen, laundry, and street access all on one level (which in hilly Cumberland, is almost impossible to find).  Pray for wisdom for us as we consider what to do in this regard, as either choice is a bit overwhelming.  
     Lee has been stretched thin in caring for Nancy, and is currently struggling with respiratory issues; please pray that he recovers soon as we enter the start up of fall ministry, when he really needs strength and alertness, especially since our new associate pastor is out with a new baby for a few weeks. We are learning more of what it means that God's grace is sufficient, that his power is made perfect in our weakness.  Nancy has just been invited to share her testimony of God's grace in her life as the keynote speaker at our presbytery women's conference to be held the second Saturday in November; she has agreed because it is an honor to be invited and she senses that God has opened this door for her to serve, yet she is also nervous. Please pray that God would use her in a wonderful way to encourage the women in the churches of our presbytery.
     Again, thank you so much for your prayers.  Nancy has come far, but still has a ways to go to getting her full strength and normal schedule back.
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