Oct 28, 2020 Latest post:
11 hours ago
Condensed Version - Written by Ri-Chee with significant editorial and medical contributions by Elaine (October 28, 2020)
This section severely limits the length of the narrative allowed to be posted here. An expanded detailed narrative of Ri-Jen's story can be found in Journal Entries of this site posted on October 28, 2020.
Ri-Jen was diagnosed with Myelodysplastic Syndrome (MDS) 7 years ago in October 2013. His subtype of MDS, based on genetic typing done at that time, would most likely progress to Acute Myeloid Leukemia (AML), a cancer of the bone marrow, at some point in the future. Bone marrow makes all the different blood cells that keep you healthy and alive (red blood cells for oxygen carrying, white cells to fight off infections, and platelets to help blood clot). And at the time of his diagnosis, the prognosis based on cancer incidence statistics, was that 50% of patients with this condition were still alive 5 years after their initial diagnosis. We were incredibly happy at his 5-yr mark (in 2018) that he was still doing well and asymptomatic - and, based on quarterly checkups, in stable condition. Now, October 2020, based on Ri-Jen’s current condition, health changes, and recent bone marrow biopsy results - his Oncology team decided it was time to start initial planning and steps for an allogeneic Stem Cell Transplant. A transplant gives the greatest chance of survival and QoL (quality of life) as other therapies used in other cancer types don’t work for what he has.
However........ the week after this decision, Ri-Jen was feeling very tired all the time. He thought it was due to his low hemoglobin. On Friday of that week (October 23), his neighbor Virginia went to check on him and found him extremely weak and not well, and rushed him to the ER at St David’s South Austin Hospital. It turns out he had a severe E. Coli infection in his bloodstream and was in dangerous septic shock. It was running amok and several of his organs were starting to shut down including renal (kidney) failure. The doctors said if he had not been brought in, he would not have made it to Saturday morning. Virgina had saved his life. Ri-Jen is doing much better under the watchful care of a big team of doctors, specialists, and nurses (from oncology, lung, kidney, infectious diseases, and transplant). As of the time this is being written, they expect to release him Monday November 2 or Tuesday November 3.
Ri-Jen will start “Induction Therapy” (to prep his body for a stem cell transplant) a couple weeks after he is discharged. This will be 2-3 chemotherapy cycles and maybe radiation therapy (RT) to kill off his diseased cells followed by the transplant (a several-hour infusion) where we hope that the new cells will take and do their job. Current estimate for the transplant is late Dec/early Jan. Typically we’ll able to tell if the transplant is successful about 3 months after the actual transplant, during which Ri-Jen will have no immune system and extremely susceptible to infections (think Boy in the Bubble) so his environment (including food) will be carefully monitored.