Passing tax day

4/7-4/16

Teri looks at each day as special, with hope, with possibilities, with interaction, with positive energy.  It has been an active week.  Friends have been telling me that Teri’s attitude towards life inspires them.

 

Teri underwent her 5^th bone marrow aspiration (through the back of her bone) on 4/13.  Her white blood and platelet counts have normalized although she remains anemic.  But the BEST news is that her blasts are down to 0%!!!  She is chemo-sensitive (sensitive to chemotherapy) in CR1 (complete remission 1) both good.  We are told that because the malignant cells exist in log units, and may have gone down from 10¹³ to 10⁶ i.e. 99.99999% she still has a significant number of cancer cells.  It still comes down to a bone marrow transplant (BMT) for long-term survival and potential cure.  She needs to be in remission in order to receive a BMT.  That is why everything that our family and friends are doing with bone marrow drives despite her remission continues to be essential for Teri.  She is inspired by everyone’s hard work and dedication.  She will go back to the hospital on Thursday April 22 to receive her 3^rd round of chemo to keep her in remission.  She will return home for one month to recoup, during which her white, red and platelet cells will again plummet leaving her at risk of complications. 

On 4/10, we held a celebration for Rachel & John’s wedding (Dec. 3).  We originally thought about cancelling it but the timing of Teri’s recovery of her bone marrow functional after chemotherapy round 2 worked out just right, and well, Teri was not going to bail out, as you can guess.  With the wonderful news of Rachel’s pregnancy we had to add that to our celebration as well as Teri’s motto “Kick Butt”.  Ben, Teri’s brother Tony, sister Terri Lin, niece Jeanine, husband Kevin, and kids Samantha and Paige and niece Eileen came from California.  Buckeyes Cindy & John, Peg came from Ohio.  Badgers Steve & Mary, daughter Kat, Mary’s mother Anne, and Ray, Memee, their daughter Ruthanne, husband Jim, and kids Elliot and Althea came from Madison.  My father was of course there.  This gave us a four generation wing span of 89 years from youngest to oldest.

We gathered at Coquette Café, a French bistro, one of our favorites within walking distance of our condo.  It was a great occasion for Rachel and John and for our extended family to celebrate three phases of LIFE – Rachel and John nuptials, their growing little peach, and Teri’s battle with leukemia. 

Prior to the party, the house was alive and festive with Sam and Paige dousing everyone with their fun and exuberant selves.  At times they said things that gave us belly laughs.  Niece Jeanine and brother Tony kept us deliciously nourished with their wonderful cooking and baking talents.  Can they come back soon?  Brother Tony stayed a week longer keeping Teri company, downloading itunes and keeping her out of trouble.

There are efforts that are getting started in China.  Sunny from the China Marrow Donor Program is helping us contact the Zhejiang and Jiangsu registries with the possibility of running drives in Teri’s parents’ two provinces that are adjacent to Shanghai.

Sean a friend and tennis partner brought us in contact with Dr. J who will be hosting two hematologists from Zhejiang province who will attending a conference at the Blood Research Institute here in Milwaukee next week.  He is arranging for us to meet with them to solicit their help in searching for a bone marrow donor for Teri in targeted geographical regions of her ancestry in China.

We also learned, unbeknownst to me, that the Medical College of Wisconsin has several world class institutions that will be very helpful to us.  The first is the Blood Research Institute and the second is the Center for International Blood and Marrow Transplant Research – the largest international research registry on bone marrow (stem cell) transplants in the world.  The latter asks and answers questions on which is best bone marrow treatment options – just what we need.  It is also the research arm for the National Marrow Donor Program. 

Teri’s sister Anita and her husband Henry received news from their travel agent in China that he would like to help Teri by contacting all the news agencies in his area on Teri’s behalf.  Also, Teri’s friend Rhonda who just returned from Kaoshung, Taiwan has a host family there that will also help Teri by encouraging all her connections to register at their local bone marrow center. It is very heartwarming to see strangers reaching out to other strangers.

We are learning more about our bone marrow options.  We are still looking for the needle in the proverbial global haystack that for us is likely to sit in Chinese territory.  However, we may not get a complete 8-9/10 (HLA) match and must look at alternatives.  All other options have both pros and cons.  Even a perfectly matched sibling transplant carries some cons – higher rate of relapse than in an ‘alternative’ (mismatched) unrelated donor. 

We then have a number of options.  1) a double umbilical cord blood transplant for which the best site is U. Minnesota,  2) an expanded (to get more stem cells) single cord transplant that is done in a few places such as Loyola U.,  3) a ‘haplo’ from a half (5/10) matched sibling for which the best site is Johns Hopkins U., and  4) a haplocord match which uses a combination of a unmatched sibling and a cord at U. Chicago.  We are setting up second opinion consults from each of these institutions before making a final decision.  We are told that we will have to move to one of these sites for the three months required for the BMT to watch the engraftment (the donor stems cells growing and providing blood and immune cells), guarding against many potential infections, and graft-versus-host disease where the mismatched donor graft attacks the host tissues. 

Teri is forging ahead with the donor marrow searches here in the U.S. and these are now listed on in China.  Son Ben has set up a web page for his mom on Facebook called Team Teri – Find a Match, Save a Life.  It lists all the upcoming drives that are being held in Teri’s name on the Facebook web page.  Check it out!

We would like to thank the following family and friends who have already run bone marrow drives for Teri.  In NY: Lois, Dave, Lucy, William, Suzanne, Al, Elyse and John.  In Milwaukee: Elica, Nancy and other APAMSA volunteers.  In California:  niece Grace. 

Finally, Teri learned from Ruby Law, director of Asian American Donor Program AADP, that if you want to do a drive for Teri, you can do a “Drive in a Box”.  All the drives for Teri through AADP will be expedited within 2 weeks!  It is quite straightforward process.  Give Ruby a call or email her and she will guide you through the drive.  Her phone number is 1-800-59-DONOR or ruby@aadp.org. 

I am trying to process all the medical information regarding the complex and difficult choices each of which contains pros and cons and much uncertainty.  It remains daunting.  It dominates our lives.  We are doing everything we can, day by day, one step at a time. 

With all her love and gratitude, Teri continues to “Kick Butt”!