It’s Day 20 post-transplant, and the last two weeks have truly tested Skylar’s strength—and ours. She’s been battling high fevers, noro virus, and painful mucositis. For over a week now, she’s needed continuous morphine and oxycodone to manage the discomfort, and it’s been heartbreaking to see her in so much pain.
But as of yesterday, we’re finally seeing signs that she’s turning a corner. Her fevers have started to settle down, and we were even able to lower her morphine dose. It’s a small but meaningful step forward.
We were also moved to a bigger room, which has been a welcome change with a bit more space to breathe. That said, the couch doesn’t exactly make for a great bed—my legs hang off by at least half a foot, and I’m definitely dreaming of a real bed, a home-cooked meal, and maybe even some regular exercise again someday soon.
One thing that’s brought real comfort to Skylar is her Evenflo Pivot Xplore Dreamz All-Terrain Stroller Wagon. (I sound like an influencer) If you have a toddler going through a bone marrow transplant and they hate the hospital bed—this is the way to go. The buggy makes her feel safe and secure, and I can rock her back and forth while she plays or rests. She’s had a little more energy lately and has been playing with toys in her buggy, which is such a joy to see.
And of course—she’s still snuggling with her bald doll. That little sidekick hasn’t left her side.
We’re cautiously hopeful that we might be able to leave the hospital in about a week. We will stay close the Primary Childrens for her 100 days of isolation and continue to come back to the hospital for check-ups 2-3x per week. The two big hurdles left are getting Skylar fever-free for 48 hours and completely weaned off the morphine. We’re not there yet—but for the first time in a while, it feels like we’re getting close.
As we begin to see the light after a rough couple of weeks, we’re also pushing hard to raise funds for The Lost Enzyme Project. This transplant is just the beginning—a bridge to the life-saving enzyme replacement therapy we are fighting for. Every donation, every share, every bit of support helps us move closer to making that future a reality for Skylar and others like her.
Thank you for being part of our village. We couldn’t do this without you.
— Erin & Nate
