Tuesday, August 6, 2013


Can you believe that it's almost five years since we began this blog? One of the earliest posts was from September 22, 2008, where we discovered that Krista had a relapse of AML leukemia. We went through the rocky treatment and recovery together and had the hope that if we could make it 5 years out from the stem-cell transplant that we could finally call it a cure. The transplant was four-and-a-half years ago and it is with great sadness that we have to let you know that we won't be able to call it a cure. The leukemia is back.


It turns out that leukemia can sometimes hide out in organs other than the bone marrow, and somehow that's what it seems to have done in Krista's case. It's strange because there was evidence of low-grade GVHD, which was supposed to attack residual leukemic cells. How could this happen? So far we don't have any real answers. But, it does not appear that she is alone in this happening. We attended a BMT InfoNet symposium in April on living with the effects of a bone marrow transplant. There we met many wonderful survivors and doctors and got connected to a great online resource -- and have now talked with a few people who have had to redo their first transplant.

After the confrence, Krista got inspired to her change care center to Dr. Nakamura at the City Of Hope in Duarte, CA, to manage her medicines and get better control over ongoing complications of the transplant. The care there is amazing, and they really treat you like a human being there -- not just a number. They began coordinating care with other experts to come up with a cohesive plan of action. Since she was having regular labs again, they caught a drop in platelet levels early on. Mid-June they were around 125,000 (normal range is 150,000-450,000) but they were dropping each week. At first we suspected it might have been due to an antibiotic she had taken that could cause a reduction in platelet count. But after many weeks of watching them drop, Dr. Nakamura became suspicious that something else was going on. It might have been a new symptom of GVHD, as if her new immune system started attacking the platelets. But GVHD is usually diagnosed after eliminating other possibilities... and the last possibility was that leukemia had returned. To eliminate this possibility, on Tuesday, July 23, he had her go down to Duarte to get a bone marrow biopsy.


Krista expected the biopsy to be a horrible experience, but the City of Hope made it a wonderful experience -- the sedation made the procedure painless! (Later when the pain killers wore off it was a different story.)
  It was a strange experience being back in a waiting mode to hear the results. We drove back to Santa Barbara and I stepped out to pick up Adam from the orthodontist. When I got back, Krista was in tears. Dr. Nakamura had called and said that the blood samples had strange cells that were consistent with leukemia. She was told to wait until Thursday to get confirmation from the biopsy.

The finding was such a shock. We had a week-long camping trip scheduled the next week, and we were imagining the awfulness of having to spend it in the hospital. We weren't going to let this diagnosis interfere with our family time, and Krista felt like she needed to experience nature in a big way. So we made an unplanned road-trip north -- not really having a destination, but wanting to go at least as far as Cambria or Big Sur. We figured we'd just find a hotel for an overnight stay when we got "there". We didn't think that we were doing this at the peak of summer vacation! There was one room at a hotel in Cambria, but $200 seemed too expensive so we kept on going. We saw the elephant seal breeding grounds near San Simeon and shortly thereafter we got a call from Dr. Nakamura with an early confirmation from the biopsy that she did indeed have leukemia. We continued north through the amazing cliffs of Big Sur -- barely. The fog was super thick and the roads were slow because of construction projects. Through the fog there would be occasional moments of clarity -- the sun breaking through or an amazing panorama. There aren't many places to stay there and the few we found were booked. We ended up in Monterey and after a frustrating look around settled for a $150 room at the Super 8! (Which in Monterey is a decent hotel otherwise we would have slept in the van.) As we settled in we were able to reflect on the trip and realized that the brief glimpses of beauty made the trip worth the pain. I think that was something the Lord wanted to speak to us about the treatment Krista's been through and would be resuming. It has been (and may continue to be) difficult, but there are moments in-between that shine and make the struggle worth it.

The treatment plan is to get Krista into remission with chemo and try to find a matching adult stem-cell donor to redo the transplant. Apparently, adult stem-cells can be more potent against leukemia than cord blood, but the match really needs to be perfect because of an increased effect of GVHD with a lesser match. At least four-and-a-half years ago, there were no perfect matches with either adult or cord blood, but things may have changed in that amount of time. Still, we are continuing to ask people to get registered or to host a bone marrow registration drive to help increase our chances of finding that perfect match.

The plan is already in motion. The first round of chemo began Tuesday, July 30. The drug of choice is a pediatric chemo that is known to be effective for adults, even though it doesn't have the FDA seal of approval for adult use yet. It's supposed to be a gentler way to go, since a repeated dose of the original chemo would be too harsh at this point. The doctor says that Krista might not even lose her hair with this one. (Some people have asked if it's a lower dose -- no, it's the same amount, just a different kind of medicine.) The chemo is sometimes known to reduce blood pressure, so they started off being very cautious. That had unfortunate consequences, as the first dose made for an excruciating night. Her blood pressure was fine, so they adjusted the pain and anti-nausea meds the next day and the remaining four doses went much smoother.

Krista was sent home Sunday to have more comfortable surroundings while her lab numbers came down. That was supposed to take about a week, but unfortunately today she had a fever with almost no white blood count. So now she's back in the hospital, getting antibiotics and being watched for any changes.

That's enough for now... Thanks for your prayers and support!

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:11)

1 comment:

Justine said...

Thanks for writing, Mike! I am always praying for you guys!! :)