5/24-6/13 (Sunday)
Teri received a call from the Johns Hopkins BMT expert in the haploidentical (half-matched sibling or child) alternative transplant who we consulted in Baltimore. Their pathologist felt strongly that Teri had myelodysplasia (an abnormal soil bed from which the leukemic weeds grow) that places her into a worse prognostic category with an even higher likelihood of leukemia relapse after chemotherapy and strongly recommended a bone marrow transplant immediately in the hope of a cure. As always, there is not uniform agreement among the different pathologists who have reviewed her slides that she has myelodysplasia is still highly likely given her age.
This led to Teri’s disquiet and reconsideration, several days of chewing and stewing and a flurry of e-mails to her oncologist here culminating in a unscheduled visit on 6/3. The immediate issue is that she wants to be absolutely sure that she is here for grandson Jack and the risk of mortality of the bone marrow (25-35%) might preclude. With much thought and discussion amongst us and the kids and Dr. H, she voted for a short-term quality of life, being there for the first grand child, and receiving a off protocol maintenance chemotherapy recommended by an AML expert from MD Anderson. HOWEVER, she also wants to go for a potential long-term cure – bone marrow transplant. She asked in an out-of-the-box, could she do both temporizing maintenance chemotherapy now, and defer the BMT until the 1st of the year?
After a lengthy discussion with our oncologist with creative thinking, flexibility, Q&A, we will be doing the following:
- the 3rd round of consolidation after induction – HIDAC that was planned and completed June 7th-12th in hospital
- modified monthly maintenance dual chemotherapy using a hypomethylating agent and Mylotarg (an agent attached to a monoclonal antibody that hones onto leukemic cells)
- a haploidential (half-matched sib or child) bone marrow transplant here in Milwaukee where they are starting the Hopkins experimental protocol with a modification (adding donor’s NK killer T cells) to both lower the risk of graft vs. host disease (donor lymphocytes attacking Teri) and to provide further attack upon her remaining leukemic cells.
This approach is likely to keep her in remission and allow her to enjoy Jack (just seen on ultrasound) and go for the gold (cure). Again, no one knows the predicted outcome for Teri’s unique profile (age, gender, race, translocation, cytogenetics, response, and myelodysplastic background) but it appears that there will be an increase of 10-20% of being cancer-free which could put her at 50% overall survival. Not great but better than anticipated 30% 3-year survival.
After much thinking and discussion, hugs and holding on, no one really knows what the right choice is amongst poor to fair choices. We have so much information from our team, from long-distance consults, from reading, from attempting to model the probabilities. Would you choose to do surgery knowing that it had a 30% mortality? Ordinarily no. These are not ordinary choices. These are not usual and customary outcomes.
One has to choose one’s poisons as each has a different quality ice of life and sets of complications. One has to come to peace with the decision. Teri has come to some of that through her intuitive approach. I have come to a semblance of peace through the deep consideration of the limited scientific evidence and listening to Teri.
Dad’s birthday celebration took place yesterday with 17 of us at a local Cantonese restaurant with 11 courses. It was great for him to see friends, artists, former graduate students now senior curators and professors, and family from Phoenix, Houston, Boston, Washington DC, and Chicago.
Knowing how life can be interesting, Dad let us know that he might be getting married and that possibly Michelle and Barack were coming as friends of the prospective other. I wasn’t so sure that we could handle the secret service. He was so excited that he kept wearing his coat and tie to dinner at our place several days before the event. He tried adult day care at the Catholic Home with 45 other seniors. However our immediate and intermediate plan was to hire Edgar and Giovan who were recommended by members of the Filipino community to come help monitor his medicine, bring food, walk with him, take him to the grocery store as Teri would be hospitalized from June 7-12. This has been working out very well going on week 3. This is an intermediate step as we set up First Alert (remote emergency alert for Dad) and as we seek to transition him to assisted living.
Another bone marrow drive at the Columbus Asian Festival over Memorial Day netted 54 people with many thanks to Cindy, John, Susan, AJ, Peg, Rick, Lily, Rebecca, Molly, Brian and others. Another organized by niece Grace and sister Terri netted 36 were enrolled at a Chinese church in Fremont today. The numbers are rising.
Teri’s Youtube video is up – search for Save a Life Teri Li. It is beautifully shot and edited by Rob & Andy. It is somber in tone and demeanor. Another one is Save a Life: Need a Bone Marrow Donor.
Because of Dad’s medical misadventures while traveling four out of the last five times, we now routinely purchase flight insurance. For the most, it has led to reimbursement. However, they denied the claim for B’s trip to Istanbul based upon Teri’s leukemia being a pre-existing illness. It essentially means that it cannot be used for her.
As much as Teri loves her nurses at the hospital, she is so thrilled to be home for good for a long while. She can tend to her container garden on the decks and enjoy summer. But she will continue to focus on raising awareness and bone marrow registrations. There’s still more work to be done given that Teri will not undergo a transplant till January.
As always, with much love and gratitude for your continuous support.
KICK BUTT!
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