A few months ago, Ben Gallaway was diagnosed with a very rare form of leukemia called primary myelofibrosis.
Primary myelofibrosis is a rare bone marrow disorder that is characterized by abnormalities in blood cell production (hematopoiesis) and scarring (formation of fibrous tissue) within the bone marrow. Bone marrow is the soft, spongy tissue that fills the center of most bones. Bone marrow contains specialized cells called hematopoietic stem cells that grow and eventually develop into one of the three main types of blood cells: red blood cells , white blood cells or platelets. In primary myelofibrosis, a change in the DNA of a single hematopoietic stem cell causes the abnormal cell to continually reproduce itself. Eventually, these abnormal cells crowd out normal, healthy cells in the marrow and, along with scarring within the marrow, disrupt the production of red and white blood cells and platelets. (WebMD)
We are anxiously awaiting test results as to a match for his bone marrow transplant. Once a match has been solidified, we will move forward with the process. Currently, Ben is working with his hematologist, hepatologist, and oncologist to come up with a plan of action. We are in the very beginning stages of treatment, but want to make sure all of our loved ones remain in the loop through this entire process! Stay tuned to receive updates as we prepare to kick cancer's butt!
Update as of 7/18/2017:
Ben had an appointment this morning at the cancer center at Honor Health to go over his gene mutation results with his oncologist. Depending on which mutation is present to "drive" the cancer cells, depends on the severity of the disorder. Unfortunately, Ben has the ASXL 1 genetic mutation which would give him a ~2 year prognosis without a bone marrow transplant (BMT). Thankfully this prognosis is not God's time!
Fortunately, this means the doctors have picked up the pace on a course of treatment and are currently speaking with a prospective donor through the national database! If all goes well with this donor, Ben will be admitted to the hospital within the next 4-6 weeks to begin his 5 week chemotherapy, and stem-cell BMT there.
Once Ben is in the hospital it is going to be hard to see him, as his risk for infection will be so high that even someone with a cough could activate an immune response and negatively impact the outcome of the transplant. We have had many people ask us how they can help, and after much consideration, we have decided as a family to begin accepting monetary donations through a Go Fund Me account. This will go towards donor costs, medical bills, and supporting Marbi while Ben is on leave from work.
Peace and Love,
- Dan Butler
- Kathy and Ross Libonati
- John Martin
- PAUL BARQUINERO
Organizer and beneficiary
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