Next phase of the journey begins

On Monday afternoon, the 13^th, I got the first good news in a conversation with the doctor who will preside over my transplant. After looking at all the evidence, the transplant search team and my doctor were satisfied that the live donor identified last December is an appropriate match. This person is a “five and a half of six” match. [Recall there are six elements that need to match. On March 12^th I posted a link to an article in Blood Magazine describing possible implications of doing a transplant with what they call a “one allele mismatch,” or one-half mismatch.]    What has changed since December is the publication of a study showing this level of mismatch does not lead to different outcomes than those of full match transplants. 

Before I could talk with the hematologist about dates for my next appointments at Dana Farber, I got a call from Deborah, the person leading the search for a donor. She told me joyfully, and before telling the doctors, that she had found the SECOND of the two cords I would need for a cord transplant.

Here is a picture of a stem cell ready for tranplant.

Now we have two options: live donor (a 35 yr old male who is a near match) or two large, matched-to-each other frozen umbilical cords for a cord transplant.

IF we elect to use the near-match "live donor,” I will spend April in the hospital for chemo, then two weeks in May. If all goes well, I should have adequate immunity by the fall to attend classes, eat in the refectory, and even travel on public transportation. If I need additional stem cells, we have the option of getting them from the donor. The downside is I’d be much more susceptible to “graft-vs-host disease” (G-V-H-D) which could mean multiple organ failures, severe skin rash, and chronic intestinal problems. The percentage of patients who get G-V-H-D that is severe enough to be a problem is down from 40% only a couple of years ago to 20% with today’s medications.

IF on the other hand, we elect to use the two umbilical cords for a transplant, I will have a longer hospital stay, perhaps up to two months.  I won't be able to do any public transportation (or hotels) for a year.  The advantage is that G-V-H-D is less likely and less severe. The danger with a cord transplant is lack of immunity.  It will take a year for me to get my "baby shots" again.  I will probably have to wear a mask when attending classes this fall and will be mostly restricted to home for many months. 

Regardless of the kind of transplant I get, I will have "induction chemotherapy" to get rid of the leukemia filling up my bone marrow. This is essentially the treatment I had in 2002.  I will get a "central line" through which I'll get the chemo, hydration, medications, and blood transfusions.  If all goes well, I will have four days of chemotherapy which will "clean out" my bone marrow.  Then the trick will be to stay free of germs, viruses and fungi until my marrow rebuilts without any leukemia cells.  At that point, I will be "in remission."  I'll have sometime to recouperate at home before the transplant. 

Here s the schedule as we know it now:    

• Friday, March 24^{th :} appointment for a bone marrow biopsy at Dana Farber
• Week of March 27^th: get results of biopsy, meet with hematologist to plan a course of action, and possibly enter Brigham & Women's hospital to begin induction chemotherapy
• Month of April: hospitalized while I receive and then recover from intense chemotherapy
• Late May: hospitalized for transplant for 2 weeks (live donor) or 2 months (cord transplant)

Daniel and I are thrilled to have options.  We know that things can go in unexpected directions in dealing with this sophisticated level of medical treatment and that there is still little experience with the new medications.  We are also grateful to have had these two months since mid December to live a wonderful life and to prepare spiritually for what is ahead. We are especially grateful for all the wonderful messages and phone calls from friends cheering us on.  Thank you, and stay tuned.

Comments

[Adam]

Dear Bonnie,

Thank you for sharing your journey with the world - it's filled with such grace and wisdom. I'm so happy to hear you have options about this important next step!

Much love,
Adam

[Jeff]

May your Friday (tomorrow at Dana Farber) be a bright one. I hope the doctors are wise and kind in guiding through the incredible complexity of the healing process that has been mapped out. I sometimes can feel God (? the Holy Spirit?) in a specific and mysterious place right between my shoulder blades (locus of forgiveness as shoulders relax and I move forward into a complexity I don't even begin to understand). May such a wisdom be with you. You are an inspiration in calmly seeing the whole in this complex process! My heart is with you tomorrow.