LYDIA CABEZA WAGNER:
Sharing Life, Giving Hope
(Editor: In September 2000, Lydia was a stem-cell transplant donor for her brother, Wesley Blalock. I asked Lydia to share her story with us.)
Giving the Gift of Life—Literally
By Lydia Cabeza Wagner, Hazardous Waste & Toxic Cleanup — SWRO
In May of 2000, my family found out that my brother and only sibling, Wesley Blalock, had chronic mylogenous leukemia. The doctors told him that, without a bone marrow transplant, he might have three years to live.
Fortunately, I was a match for him and we proceeded with a stem-cell transplant, which is slightly different from a bone-marrow transplant. The transplant was successfully accomplished and Wesley's recuperation has been remarkable. We are told this is so because he was otherwise in excellent health and his donor was an almost identical match. (It would have been even a better match if I had been an identical twin, or if I was a male and had the same blood type.)
 Lydia & Wesley |
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Wesley's leukemia was declared to be in remission earlier this year, however, he is still fighting "graft versus host" disease. Also referred to as GVH, this condition happens to a majority of transplant patients and can be life threatening if it occurs within the first few months of the transplant. It can affect any or all parts of the body and can be a struggle for several years after the transplant.
For my brother, it is primarily affecting his lungs. Last month, he was out of work for a week because his lung capacity was down to 20 percent. He told me it would take him 15 minutes just to walk from one end of his home to the other. When I spoke to him recently, his lung capacity had increased to 67 percent. He still tires easily and has to closely monitor this situation.
Wesley has experienced dysfunction of the liver and kidneys as well as cold sores in his mouth and gum tissue, all due to GVH. He says because he is still on so many medications, his body feels like a toxic-waste dump. I'm so proud of how he's fighting the good fight to build up his immune system, increase his strength and live a long and healthier life.
Looking back, It was difficult to watch what my brother had to go through. Once, I stayed with him for a week to be his caregiver and my eyes were opened up to his day-to-day reality: daily vomiting, extreme tiredness, fits of anger or deep emotion, changes in vision, lack of concentration, and much more. I realized that all he wanted was an ordinary day—just to know what it felt like to be healthy again. And I wanted those things for him, too!
Even though I had been on the Puget Sound Bone Marrow Registry for almost 10 years, I never anticipated having to go through the process for my own brother. Let me tell you, the emotional connection to the process and outcome presents a whole different mindset.
 Governor Locke signs Executive Order 02-01 (photo courtesy of Sharon Kinder, Department of Licensing) |
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In talking with people who have friends or family members going through cancer treatment, I have come to realize the importance of organ and/or tissue donation. It was lucky that I was a match for my brother because many more people are not that fortunate. I met people who had waited for months and years to find a matching donor so they could begin treatment. This strengthened my resolve to be an organ donor—now and after I have left my physical body behind on this earth.
For a bone marrow transplant, the hospital anesthetizes the donor and extracts bone marrow directly out of the hip bones. The stem-cell transplant is quite different. The donor begins the process by receiving three injections of a growth hormone into the stomach or upper arms for five consecutive days. This hormone stimulates your body to produce lots of immature blood cells that will eventually be harvested to give to the patient. On the fifth day, the donor lies on a bed with intravenous needles in each arm. One IV tube takes blood out of the donor, where it is put through a fascinating array of machinery that extracts the white blood cells. The remaining blood is then returned to the donor. The process is called apheresis, and it takes about one and one-half hours.
Would I go through this process again? In a heartbeat! At first I didn't think I could even consider it. But then one day I was at the Fred Hutchinson Cancer Research Center (FHCRC) and saw a young child that was going through chemotherapy in preparation for a transplant. I heard her parents talk about how it had taken almost a year to find an unrelated bone-marrow donor and that this could be her last chance to be rid of the cancer. At that moment, I decided to keep my name on the registry. What are a few days of pain and discomfort in the face of possibly saving a life?
I have been humbled by what I have seen at the FHCRC in Seattle. Their staff members are some of the most compassionate individuals I've ever met. People come from all over the United States for cancer treatment at FHCRC, which is the best in the nation for treating leukemia. It was quite humbling, often depressing, and sometimes encouraging to see the strength demonstrated by friends and family members of the cancer patients. My family has been extremely lucky that everything has gone well for my brother; we saw the opposite case too many times.
 Lydia meets Karen and Jamie Moyer |
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Because of my personal experience with the benefits of organ and tissue donation, Governor Locke's office invited me to participate in a news conference where he would be issuing an executive order allowing state employees to take up to five days of paid leave in a two-year period to participate in medically supervised life-giving procedures. With this order, the Governor has given state employees an incredible gift that will benefit an unforeseeable amount of people. I was thrilled to witness the event.
In addition to meeting Governor Locke, I was also thrilled by the opportunity to meet a very special guest, my favorite Seattle Mariners pitcher, Jamie Moyer, at the press conference. Jamie and his wife, Karen, created the Moyer Foundation, a non-profit organization to help families in crisis.
I am pleased to be a part of the Blood/Bone Marrow Drive Committee for state workers. We are coordinating a few dozen drives this summer, culminating in a concentrated period during the week of August 19th. If you have any questions about what it takes and what you go through as a bone marrow or stem cell donor, please ask me (my e-mail address is: LBLA461@ecy.wa.gov) . I'm always willing to share my experience in the hope that it will encourage others to sign up to become donors and to be on the bone-marrow registry.
I'm delighted to share my brother's story because it has a happy ending: he is alive and getting better every day. Yes, he has some serious challenges to face, but the important thing to remember is that he is alive to meet and conquer those challenges. I hope that every other cancer patient gets this same opportunity and has the same positive outcome.
For more information about organ/tissue donation, check out the FHCRC's web page at http://www.fhcrc.org
Childhood Leukemia: A Guide for Families, Friends and Caregivers (3rd Edition)Nancy Keene
$29.95(USD)
This most complete parent guide covers not only detailed and precise medical information about leukemia and the various treatment options, but also day-to-day practical advice on how to cope with procedures, hospitalization, family and friends, school, social and financial issues, communication, feelings, and, if therapy is not successful, the difficult issues of death and bereavement. Woven among the medical details and the practical advice are the voices of parents and children who have lived with leukemia and its treatments. As many parents have already found, advice from "veteran" parents can be a lifeline. Obtaining a basic understanding of topics such as medical terminology, how drugs work, common side effects of chemotherapy, and how to work more effectively with medical personnel can only improve the quality of life for the whole family suffering along with their leukemic child. Having parents describe their own emotional ups and downs, how they coped, and how they molded their family life around hospitalizations can be a tremendous comfort. Just knowing that there are other kids on chemotherapy who refuse to eat anything but tacos or who have frequent rages can make one feel less alone. Parents who read this book will encounter medical facts simply explained, advice to ease their daily life, and tools to be a strong advocate for their child. This third edition contains significant updates to the information on treatments, chemotherapy drugs, bone marrow transplants, coping with side effects, and resources. It also contains a personal treatment summary and long-term follow-up guide for your child to keep as a permanent record.
Adult Leukemia: A Comprehensive Guide for Patients and Families$29.95(USD)
Tens of thousands of Americans are living with adult leukemia, a cancer of the white blood cells. Adult leukemia, which is really a group of diseases, can be a baffling condition for patients and families to understand, and finding targeted information on individual conditions can be difficult. In straightforward, non-technical language, Adult Leukemia: A Comprehensive Guide for Patients and Families gives those living with leukemia the skills and resources to meet their needs for information and support. It addresses:
- Diagnosis and medical tests
- Finding, and successfully interacting with, a good oncologist
- Characteristics of the leukemias, factors in prognosis, and the various subtypes and staging systems for the disease
- Treatments, including watch-and-wait, chemotherapy, marrow transplantation, stem cell rescue, radiation, biological treatments, and trends in research
- Side effects and long-term effects of treatment, including how to cope and increase your quality of life
- Emotional responses to diagnosis, treatment, remission, possible recurrence, and other aspects of dealing with the condition, including stories from dozens of families living with leukemia
- Getting support from your family, friends, employers, and the broader community
- Leukemia resources: a comprehensive list that includes organizations, print, and online sites
Clearly Charming Orange Ribbon Hunger, Leukemia Awareness Italian Charm$9.99(USD)
Orange ribbon stands for Leukemia, lupus, and cultural diversity awareness. It will make a great addition to your Italian charm bracelet or a perfect personalized gift. Commemorate special occasions, capture memorable moments, or simply show off your birthstone by creating your own original Italian charm bracelet. Add Clearly Charming premium quality interlocking modular Italian charm links to your Italian Charm Bracelet and create your own memory bracelet.
Cure Leukemia Awareness Ribbon MagnetModel: M-LR-LEUK; Cure Leukemia Awareness 2 in 1 Ribbon Magnet. High Quality UV protected printed vinyl ribbons backed with thick .30 mil magnetic material. Great fundraiser for awareness organizations, schools, churches, or your fundraiser group. Dimensions: 3 7/8" x 8"
Beating Myeloid Leukemia Together MugText on mug: Beating Myeloid Leukemia Together
* Custom coffee mugs are dishwasher-safe and microwave-safe. Colors are permanently baked into the mug''s surface.
* If you have new ideas or need help selecting text for your custom coffee mugs please contact us.
* Size: 11 oz. capacity ceramic coffee mug.
Leukemia for ChickensRoger Madoff
$15.50(USD)
Roger Madoff was diagnosed with leukemia in 2002. After enduring two years of chemotherapy and radiation, two stem-cell transplants and numerous immuno-suppressive treatments, he felt strong enough to write about his experience. Roger was a reporter for Bloomberg News and lived in New York City with his wife, Jen, and dog, Milo. He died on April 15, 2006, at the age of 32, from the debilitating side effects of his second transplant. This book is filled with the strength, humor, love and hope that defined his life. For more information, please visit: www.leukemiaforchickens.com
$99.95(USD)
"This program explains how this cancer spreads through the body. It distinguishes between acute and chronic leukemia; covers the history of leukemia treatments from chemotherapy, through the combination of chemotherapy and radiation, to bone marrow transplants and a host of new devices and techniques for diagnosing and treating the illness; explains that more thatn half of today's young leukemia patients will be cured; and shows how a patient copes with chronic leukemia."