There comes a time in everyone's journey when you are standing at the threshold of eternity and confronting your demise.

My husband, Robert, stood at that threshold in 2017, when he was first diagnosed with the end stage of an extremely rare autoimmune disease called EGPA/Vasculitis. He flat-lined four times while he was admitted to the hospital for two months. He was unable to walk for 7 months after the diagnosis due to complete muscle atrophy. The first treatment his team of doctors started him on was oral cyclophosphamide (a chemotherapy medication) and high doses of prednisone daily for 6 months. Robert mustered through the first six months like a champion, and we were able to put his disease into a small remission. He was able to walk again and enjoy some light activities. Over the past six and a half years, Robert has had a continuous truculent battle with EGPA/Vasculitis, but he has always come out from the obscurity of the disease and kept onward, knowing that one day he would hopefully be in full remission.

Unfortunately, the chemotherapy medication, cyclophosphamide, that once helped save his life, has now given rise to an extremely rare side effect.

On April 19th, I had to call 911 at 3:00 in the morning after Robert started convulsing and was unresponsive. By the time the paramedics got Robert to the emergency department, Robert was alert again. After lab work and many other tests came back, we were informed that Robert's blood count was critically low. He received a blood transfusion and was admitted to the hospital. The doctors at St. Anthony's Hospital decided to transfer Robert to the University of Washington in Seattle where he could get more extensive care. Once we were at the UWMC, Robert got a bone marrow biopsy. We anxiously waited a week and a half for the biopsy results. In the meantime, Robert was getting platelets and blood transfusions daily while his blood count remained critically low. We spent two and a half weeks in the hospital awaiting results.

A team of oncology doctors entered our hospital room at the University of Washington Medical and Research Center on the 6th floor to narrate Robert's diagnosis to us. After the diagnosis was explained, they moved us to the 8th floor (8SA) of the UWMC, which is the Fred Hutch Cancer floor, where we stayed until May 15th.

Myelodysplastic Syndrome and Acute Myeloid Leukemia... MDS/AML with biallelic TP53 and complex karyotype neoplasia. This rare leukemia comes with a poor prognosis. The only cure is to get a stem cell transplant. The leukemia oncologist explained to us that because of Robert's pre-existing conditions, he could possibly be rejected by the transplant team for a stem cell transplant. If Robert is denied a SCT, the course of action will be to stay on a chemotherapy treatment until Robert's body starts to reject the chemotherapy, in which we were told it could be 2 - 6 months. In the meantime, Robert's body is transfusion dependent. We have appointments at the Fred Hutch Cancer Alliance every other day for platelets and blood transfusions. Our appointments last anywhere from 6-8 hours. To say we are exhausted and sorrowful would be an understatement. We do not live near the Fred Hutch, and we were told since Robert is now neutropenic, that we would need to stay in lodging nearby, because any sign of infection or fever could have fatal results in less than an hour.

We are fortunate enough to have some wonderful friends, who we consider family, who live within a fifteen-minute radius of the Fred Hutch and the UWMC. They are out of town for a month and have given us the wonderful gift of their home for the month of June. However, they will be coming back on July 1st, and we will need to move into the Behnke House, which is less than a mile away from Fred Hutch.

The bills are piling up, and the cancer lodging is not cheap. We are working together with several Fred Hutch social workers in hopes that Robert's insurance will help subsidize some of the cost for lodging. We were told that the insurance would pay for some of the lodging, but they will not cover everything, including daily parking, food, and insurance co-pays.

I am reaching out to my tribe, because I was always told "it takes a village." Please consider donating for our fight. Robert fought a couple of extremely rare autoimmune diseases and has been winning.

We are now facing another rare disease that I KNOW we can beat!

We also have a few friends looking into alternative holistic avenues. We were told that there are no clinical trials as of yet, since this leukemia is so rare, but we will NOT give up hope!