Hey y’all! We’re all still here, doing our thing. We haven’t posted about Aspen’s relapse in awhile because, frankly, it’s been a whirlwind. We have had to readjust our whole world again to relapse life, including our mindsets. The doctors sat us down, again, to remind us that no one has survived this, there are no known cures, only potential cures, and ultimately they don’t have a plan. We are in cowboy medicine territory, truly a new frontier.
The end goal is a cure, but no one really knows how to get there. When Aspen was first diagnosed the goal was clear: transplant. This time, it’s not so clear and we’re taking each cycle as it comes. What we do know for certain is that Aspen’s most recent biopsy after the first round of chemo came back showing no evidence of disease via flow cytometry and PCR. The sample extracted was labeled as “suboptimal,” likely because she was still recovering from the most recent round of chemo, hence the asterisk. Even with the caveat, the team agrees that this is good news, her body is showing an objective response to the regimen (decitabine and STRO-002). Aspen’s disease hides and goes dormant, so we definitely have trust issues, but we’re hanging on to the good news and moving forward with cautious optimism.
After two rounds of treatment Aspen is tolerating it well. Aspen just completed another round of Decitabine and STRO-002. Because, well, it’s working, do it again. We don’t know which drug is actually destroying the cancer cells, but we do know that the combination is working. In the next round we’ll substitute STRO-002 for a donor lymphocyte infusion (DLI), which is essentially a boost of cells from Aspen’s stem cell donor.
The goal with the DLI is to induce a manageable case of graft versus host disease (GVHD) with the hope of creating graft versus leukemia (GVL) where the new cells directly attack any lingering leukemia cells. The irony of all of this is that during transplant you want to avoid GVHD due to risk of severe complications, but GVL is a beneficial by-product. Aspen’s transplant doctor gave us the grim warning that she’s had situations where DLI has caused people’s demise. But, this is just another situation where the benefits outweigh the risks. Again, moving forward with cautious optimism and hoping for the best.
So far, Aspen has tolerated the two rounds of treatment quite well. While she is certainly more tired with some bouts of diarrhea, she maintains her spunkiness. Every day we focus on as much fun and activities as possible while Aspen is feeling well.
Speaking of fun, a couple of weeks ago we had the opportunity to stay at Tommy’s Place, a vacation house for cancer families in Falmouth, MA. The opportunity came as a surprise to us, as the only reason we were able to go was because there was a cancellation. It’s hard to think of why there was a cancellation, but we’re grateful for the opportunity. We spent an entire week at Tommy’s Place and exploring Falmouth with visits from family members. Aspen was in her glory exploring all of the themed rooms and Elliott became a master at Minecraft on Xbox.
We look forward to posting more positive posts about Aspen and we remain hopeful while creating memories for Aspen and Elliott daily!