Readmission for 3rd round of chemotherapy (2nd consolidation)

4/17-4/24  

Teri is admitted to the hospital for 6 days until next Tuesday for her 3^rd round of chemotherapy and her 2^nd consolidation round.  Overall it is going smoothly.  However, she is tired, a bit down.  This past week has been a frenzied push for bone marrow drives, media attention and one of three long-distance consults on a specific type of experimental umbilical cord blood (stem cell) transplant in Chicago.  Her goal is to rest and she is doing that.

Last week, Teri put a call out to friends from Organization of Chinese Americans and Gan Bei women’s club for help in publicizing Teri’s plight including the need for a bone marrow match, and more minority (Asian) registrants.  Bob and sister Elena, Linda, Mila, Lorna, Ying, and Cindy (by conference call) came to our condo and brainstormed for three hours about media exposure, both locally and nationally.  Elena connected us with her daughter-in-law Catrin who works for the NY Times and called us and is actively helping us edit copy for a YouTube and FaceBook video message. 

Son Ben organized a bone marrow drive @ UCSF (San Francisco) where he works.  He and Teri’s sister Anita were interviewed on a Chinese TV station KTSF in English and Chinese respectively.  Anita, her husband Henry, sister Terri Lyn, and friends put many bone marrow donor packets together for AADP – some of you may have received one of the theirs.  Teri’s brother Tony helped at the drive.  All told, they registered 66!  A family donor affair! 

Of note, last week’s drive here at MCW on Teri’s behalf netted 135 registrants – one every 2 minutes – with 44 Asian Americans!  A success.

Susan, a member of our Gourmet Club, came from Columbus to spend time with Teri.  After arriving, we drove down to Chicago where she waited patiently while we completed our consultation at Loyola.  Afterwards, we went to H Mart a gigantic Korean grocery store with a food court offering Korean, Japanese and Chinese food.  During the visit, she and Teri were laughing at (not with) me as they whispered about how similar I was to Susan’s husband AJ.  AJ, were your ears burning?

We had a 3-hour visit with a BMT specialist Dr. R. from Loyola with the intention on learning about umbilical cord expansion.  Two umbilical cord units are usually required to provide sufficient stem cells to reconstitute (engraft) an adult.  Since they have found only a single umbilical cord unit, one option done at Loyola is to growing additional stem cells in the lab by giving part and proliferating more in the other half – an experimental cord expansion protocol – which are given a few days later.  This approach carries significant risks since the expansion doesn’t always work and the engraftment of ‘cord’ cells which are immune naïve (immature) takes longer to engraft than for a live donor.  From the information provided, we know that although the unit is available, it will take three weeks to proliferate additional stem cells in the lab, take up to four weeks to develop some immunity during which she is at great risk of infection, and will require 100 days of relocation to their center.  For insurance, in the case of non-engraftment where the donor stems cells do not produce blood cells, the center will remove some of her own stems cells through a bone marrow, freeze them and keep them for an bridging autologous (from own self) transplant.  Unfortunately, we could not get exact outcomes figures because he felt that her individual variables make it difficult to prognosticate from group data.  We do know that there is increased cancer-free survival from an umbilical cord compared to chemotherapy alone (35%) but are still not certain how much, offset by a 30-40% mortality from the bone marrow transplant itself.  These are difficult numbers to stomach.

The best is a matched sibling or matched, unrelated donor, neither of which we have.  So we are still gathering data (procedure, complications, graft vs. host disease, outcomes advantage) on several ‘alternative’ transplant choices including:  1) chemotherapy alone,  2) autologous (from Teri’s own marrow) stem cell transplant,  3) double (2 units) umbilical cord stem cell transplant (we only have one),  4) a single cord stem cell transplant,  5) expanded single cord stem cell transplant,  6) haplo (half-matched sibling or child) stem cell transplant, and  7) haplo + umbilical cord stem cell transplant.  It is an overwhelming choice without an obvious frontrunner.  All carry high risks.  We feel we have to explore these secondary choices and do the best we can with our oncologist to process the information and make an informed decision.  More than a little of rolling the dice.

On Saturday – Rob (videographer, resident) and Elena came to discuss the making of a short video.  Rob lent us a HD video camera smaller in size than a iPhone to start us out.  He and others will help us edit it for FaceBook, YouTube use in bone marrow drives.  Kathy who is condo neighbor from Chicago and a former colleague at Children’s Memorial came to bring us scuttle but from the condo and from the former department.

I started reading a book Oracle Bones (about modern China against a backdrop of recent archeological findings) by Peter Hessler that I learned about in my alumni magazine.  Hessler is a great listener and astute observer who comes to understand the foibles of Chinese and Americans through many interesting and humorous interactions with common people.  These vignettes and historical insights are so insightful and entertaining that Teri is reading Rivertown, my father Oracle Bones, and I Country Driving, all by the same author – three family members reading the same author simultaneously.

We never ceased to be amazed at the kindness and concern of strangers who know Teri and I but a little.