Transplant Schedule Firming Up

• Barring any unanticipated delays, I’ll start the conditioning regimen for my myeloablative stem cell transplant next week, on June 3.  I’m scheduled to get three days of chemo (fludarabine and cytoxan), a “rest day,” and then four days of total body irradiation (TBI).  The goal of the conditioning is to eliminate (ablate) my existing bone marrow (and immune system), and kill remaining leukemia cells in my system. 
• On or about June 11, after the chemo and radiation conditioning is complete, I’ll get my new stem cells via a transfusion.  The idea is that these new stem cells (from two units of umbilical cord blood donated by parents after the birth of their children in New York state and somewhere in Italy) will then be able to engraft in my marrow space, begin producing new blood cells (and thus a new immune system for me), and eliminate any lingering remnants of my leukemia.  I’ll be getting two cord blood units because research has shown that total cell volume–even when achieved by combining two separate cord blood units–is crucial to the success of the engraftment process.  (The amount of stem cell-rich cord blood that can be collected after the birth of a single child is, not surprisingly, pretty low compared to the volume of stem cells that can be harvested from an adult donor.)
• Remarkably, the two cord blood units only need to be matched to me (and to each other) in four out of six major HLA types.  Because umbilical cord stem cells are “naive,” they are able to demonstrate significant flexibility and adaptability as they engraft and establish a new immune system.  By contrast, adult stem cells need to be matched in ten out of ten HLA types to ensure a comparable level of success.
• The chemo and radiation will take a lot out of me.  While they will target my faulty marrow and the leukemia it is producing, they will also affect other fast growing cells in my body.  It sounds like one of the least pleasant side effects of the conditioning will be the mucositis that results when the cells lining my mouth and GI tract temporarily stop regenerating.  Fortunately, the medical team here at the Hutch is tremendously experienced at dealing with mucositis, and all of the other side effects and complications that can crop up, so I feel like I’m in good hands.
• After the June 11 transfusion of my new stem cells, it will take anywhere from 10-30 days (the sooner the better) for the new cells to engraft.  Once the cells have engrafted, and as long as my blood counts are starting to recover and I am able to drink, eat, etc., I will be released from the hospital and be able to head back to our apartment near the out-patient clinic.  The best case scenario for my upcoming hospitalization is probably a 25 day stay; more likely, I could be in for 30-40 days.  It’s not my idea of the ideal way to spend the beautiful month of June, but considering my options, I’m certainly not going to complain.
• It’s been a long haul to get here, so we’re eager to get started.  There’s lots of worrisome stuff ahead (mucositis, the possibility of graft versus host disease, the nagging fear of relapse, and probably many things I haven’t even begun to consider), but it’s good to be moving ahead towards a cure.
• Thank you for your messages of support.  Lisa, the girls, and I are grateful for them all.

Transplant Date Set (Tentatively) for Early June

• Lisa and I met with my key doctors today.  Although results of several tests from last week’s bone marrow are still pending, Dr. Storb (the attending physician) and Dr. Astigarraga (my primary care physician) seem to think it most likely that I should start the transplant process on June 3.  If this schedule holds, I’d receive the cord blood transplant on June 11 and likely spend the following 3-4 weeks in the hospital.
• Given how quickly and unexpectedly treatment schedules can change, it’s probably best to treat this schedule as tentative for the time being, but it’s good to have a date to look forward to (at least until we hear differently).  We hope to have greater clarity by the end of the week, or early next week at the latest.
• Otherwise, things are going well.  My mom is visiting from Vermont and we’ve had some good walks and rides around the city, and visits to the Hutch School, the SCCA clinic, and our various other current hangouts.
• While we’re generally feeling settled into the “new normal” of our lives in Seattle, there’s not a day (or perhaps even a minute) that goes by where we aren’t reminded of our eagerness to take care of business here so that we can get back to the business of ordinary life.  We are continually grateful for the supportive notes and calls and packages that family and friends have sent, which help to sustain us through this challenging period, and remind us of the great community we are fortunate to belong to.
• Also, last week I’d mentioned my inability to upload some photos from a visit to Seattle’s Japanese Garden.  I think I’ve got it sorted out now.

Seattle’s Japanese Garden, May 2008

Isabel, Japanese Garden, May 2008

Amelia and Isabel, Japanese Garden, May 2008

Hutch School update

• I got a welcome reprieve on the lumbar puncture.  After reviewing my file on Monday, the doctor decided it could wait until this coming Friday, when I’ll be getting the bone marrow biopsy (with the help of some pretty good sedation).  The fentanyl lolipop should be a big help.
• The most recent Hutch School monthly bulletin has some good photos of the girls and their classmates, musings on poetry by Isabel, and a book review by Amelia.  (Note that Isabel has decided that she now spells her nickname “Iszy.”)  Here’s a link to the PDF.
• Gary and Diane, some old friends from Pittsford, NY (where they lived across the street from Lisa’s mom), and who now live in Portland, OR, came for a visit earlier this week.  We enjoyed some great meals together and made a memorable visit to the Japanese Garden and the University of Washington Arboretum.  WordPress is giving me a bit of trouble with uploading the photos from the garden, but I’ll try to get them posted soon.

Waiting Game

• My blood counts improved late last week, and with them my energy returned.  Although we spent one long evening at the clinic getting red blood and platelets, last week generally went pretty smoothly.  Given that things were going pretty well, I guess I shouldn’t have been surprised to hit a bit of a hitch at the end of the week.  On Friday (May 9), one of my SCCA docs, who had done a near-painless lumbar puncture for me the previous week, was unsuccessful in her efforts to give me another required LP (to test for any leukemia in my central nervous system and to administer some more maintenance chemo to prevent CNS relapse).  The doctor made several attempts (thankfully using lots of lidocaine), but it was a bummer to get these jabs (which can still hurt a good bit) with nothing to show for it.  We’re going to try again tomorrow (May 12).
• The SCCA schedule for the week ahead looks to be pretty light.  The big event will be another bone marrow biopsy on Friday (May 16).  The results of this biopsy, which won’t be available until the following week, will likely determine if I am ready to start the transplant process or if I need another round of chemo.  The cord blood units that SCCA has reserved for my transplant are ready to ship (from cord blood banks in Italy and in New York state), so we hope they will get the green light to ship next week.

Sunday Morning at the Clinic

• Very little news to report.  My daily visit to the SCCA outpatient clinic this morning indicated that my blood counts remain very low.  My white blood cells and neutrophils (infection-fighting blood cells) are at near-zero and zero, respectively, so I have to be extra-vigilant about avoiding infections since my body can’t resist any infections at this point.  I’m getting daily injections of neopogen/filgrastim aimed at helping my neutrophils to rebound, and these should do the job soon.  Despite a blood transfusion on Friday, my hematocrit (percentage of oxygen-carrying red blood cells relative to overall blood volume) is trending down again, so my energy continues to be pretty minimal.  Unless my counts start to rebound tomorrow, I’ll probably get another blood transfusion early this week.
• The weekend visits to the clinic are, of course, not how we’d normally choose to spend our time, but we’ve really come to appreciate the short waiting times at the blood draw stations (during the week, waits can often be 30-45 minutes because of the volume of patients) and the great nurse, Cindy, who looks after me on the weekends.
• Aside from my continuing lack of energy, we are grateful that things are going pretty smoothly.  I’ve been trying to catch up on some reading.  (Lisa got me a copy of Peter Matthiessen’s Shadow Country, which at 900 pages is keeping me well occupied.  Here’s a review that gives a good sense of the book.)  The girls continue to be happy with the Hutch School, and went on a field trip on Wednesday to the opening of the nearby Lake Union Park.  Lisa and the girls also had a fun visit on Saturday afternoon to the Seattle Aquarium.  It’s beautiful, sunny spring afternoon here, and it’s good to have the sunshine and the breezes.