Fortuitously it occurred the day after the coincidence of Mother’s day and our wedding anniversary, two days laden with memories for both the kids and I. This year I spent that day with Ron and Kari. Kari harkens back to Columbus 1986 when she was Rachel and Ben’s Suzuki violin teacher and Teri’s masseuse. The following day, I had dinner with Dr. H. Obviously a pearl strand of memories.
I invited Dr. H, mom’s oncologist and bone marrow specialist, to dinner specifically to catch up and for me to ask about Teri, to gain an additional modicum of medical closure. Even though we work in the same large medical institution, I had not crossed paths with him in more than 6 years since Teri died. It’s insufficient to say that he was very special to Teri and vice versa. It was not only his thoughtful care and willingness to go the extra mile to seek unique, cutting edge, individualized solutions but also the relationship they developed. Dr. H says he still ponders about her twice a month, about what lessons he learned and about what he could have done differently.
His professional career has been ascendant and a reflection of his clinical and administrative expertise. As Director of Bone Marrow Transplant (BMT), he subsequently grew the BMT physician staff from 3 at Teri’s time to 15 currently. He stated that their 1 year BMT survival rates have been #1 in the country for the last four years running and exceed the famed MD Anderson in Houston by 20% points! He has since been promoted to Chief of entire Hematology and Oncology Division encompassing 160 staff.
I talked about my retirement and the impact of Teri’s premature death and the battles over insurance coverage with my institution that hastened my transition.
Then we revisited Teri’s illness.
What went awry? Simply stated, in the absence of a high quality live donor match, the partly but best matched umbilical cord sample simply did not provide enough stem cells to allow her to manufacture sufficient numbers of white cells to fend off the multiple viral infections that plagued her to the very end. Of course, there are now new ways to expand them in the test tube. And as you may remember, immature umbilical cord stems cells are not armed and targeted towards infections without a sergeant thymus gland that recedes after age 60. Lastly, the constant viral infections (CMV, herpes and BK) further suppressed her fledgling umbilical marrow from producing new neutrophils (white cells).
What more could have done? Dr. H was thinking that the next step, if she had consented, was to inject another dose of her own autologous marrow so she would have a chimeric combination of Ben, umbilical cord and her own. He projected that she might have lived another year perhaps up to three. But as we all know, with catheters surfacing from her back, arm and neck weary worn of all the interventions. She absolutely couldn’t tolerate the physical distress of dialysis. Most of all, as a vibrant, active and proactive independent soul, she couldn’t accept her complete loss of autonomy and dependence upon others. She had always been the fulcrum of our family, the emotional center, the earth mother. And, on her terms, she made the fateful decision to stop all therapy, and faced death with equanimity.
How would Teri be treated today – 7 years later? The initial chemotherapy would be the same. But after the expected relapse, she would now just receive Ben’s partially matched stem cells from leukopheresis without any secondary umbilical cord donor. In fact, one now needs only a 5/10 match instead of an 8/10 HLA match. Rejection results from this half match but it is deftly handled by a repurposed drug Cytoxan (cyclophosphamide). With this new protocol she wouldn’t have developed those infections that afflict the immunocompromised and would have likely survived to see the anticipated births of Naomi and imminent Flora (Ben and Theresa).
So how does this new information feel … closure? Poignantly, yes it does. Certainly there is the wistful what if she became ill 3 years later, that there could have been markedly different outcome … Perhaps lessons learned from her unique, terrifying, complicated illness are helping. Medicine evolves, especially quickly in oncology and immunology. And we see the remarkable progress has been made in her mismatched bone marrow transplant in just a few years … for others. It gives me hope for the future. We still miss her.
Note: New pictures uploaded below.
Note: New pictures uploaded below.
