We’re now 63 days out from Skylar’s bone marrow transplant, and we’re still here at Primary Children’s Hospital—no discharge date in sight.
When we started this journey, we knew it wouldn’t be easy. But it’s hard to put into words how long the days feel when you’re living minute by minute, trying to get on top of complications like Graft vs Host Disease (GVHD).
A few weeks ago, the team increased her dose of Jakafi, a medication that helps manage GVHD. That gave us some progress—it slowed down her stool output, which was one of the major symptoms we were battling. But even with that improvement, Skylar’s GVHD remains uncontrolled.
So last week, her doctors decided it was time to try something more: ECP therapy (Extracorporeal Photopheresis). For those unfamiliar, ECP is a procedure where Skylar’s blood is drawn out through a machine, her white blood cells are separated, treated with a light-sensitive medication, exposed to ultraviolet light, and then returned to her body. This process helps calm her immune system and is often used for steroid-resistant GVHD. The hope is that ECP will reduce her GVHD symptoms without the side effects that come from heavy immune suppression.
Unfortunately, just as we were preparing to start ECP, Skylar developed a staph infection in her central line—a serious complication. The team had to remove the line, treat the infection, and place a new apheresis line last night.
But today, Skylar received her first ECP treatment, and it went well. For the first time in weeks, it feels like we might be turning a corner.
While Skylar fights her battle in the hospital, we’re also trying to keep life as normal as possible for her brothers. We’ve officially enrolled the boys in the Morgan school district and signed them up for football this fall. Brooks and Charlie have already started football conditioning in the mornings, and they’re excited to have something to look forward to.
It’s a lot—juggling life in the hospital while keeping things moving for the rest of the family—but we’re doing the best we can, one day at a time.
Thank you to everyone who continues to check in, pray, and support our family during this time. We don’t take it for granted. We’ll keep you updated as we continue on this path.
