The last couple of months have been nothing short of interesting around here; there’s never a dull moment. By way of recollection, a few weeks prior to Aspen’s Wish Trip to Disney Ashley underwent back surgery to correct a herniated disc. Upon returning from the trip, Aspen had a biopsy (MRD negative) and Troy tested positive for COVID. We’ve also been camping a few times, Elliott finished pre-school, lots of water balloon fights, y’know, making all the core memories we possibly can.
For the past month or so, Ashley’s been experiencing severe back pain, much like the pain she had prior to surgery. One of the many things you’re forced to learn as a cancer parent is advocacy, pushing for diagnostics/treatments you know are available and finding providers that will listen to you. Fortunately, Ashley was with the right care team this time around, and they acted quickly. On a Thursday afternoon Ashley went in for an MRI, less than 24-hours the neurosurgeon called to advise she would need surgery again, and it could be done Monday afternoon. Ashley had a couple of less invasive options, but given the severity of the herniation, she would need to undergo the same procedure or go to a more intensive fusion procedure. With advice from the surgeon Ashley went with repeating the discectomy, physical therapy, and lots of rest.
All the while, Aspen’s been in treatment and living the best life she can. Every 30-days or so Aspen undergoes a treatment cycle consisting of decitabine, STRO-001, and a donor lymphocyte infusion (DLI). The foregoing protocol is done three times, with the last cycle of this protocol ending next week with her last DLI. Following completion of the cycle, Aspen will take a brief break to allow counts to recover and then go in for a biopsy to determine whether the treatment is working. The future treatment protocol will be determined by the outcome of the next biopsy. If it’s negative, Aspen is facing at least another year of treatment… maybe? As we’ve said before, we’re making this up as we go, reacting to the disease, trying to control it with the best science available.
A huge thank you to those who’ve helped us along the way, especially Ashley’s mom, who took Aspen to chemo all week so I could help Ashley. In a turn of events, Aspen now holds Ashley’s hand when Ashley’s dressing is changed.
Remember, the trick is to surrender to the flow. Be well, y’all.