Between camps, school, and hospital days, life has been full. I wanted to give an update on how Eliana has been doing — the fun, the hard, and the hopeful.
This summer held so many good moments. Eliana went to camps for softball, theater, and cooking, had an overnight camp through CHOA, and treasured time with her cousin. She also kicked off 7th grade — which feels impossible to believe some days. Time is flying, and I’m grateful for every chance she gets to just be a kid.
We also had a special visit from her grandparents, Deedle and Jet, during fall break, which filled our home with love and laughter. Those visits mean so much.
But alongside the bright spots, the medical side has felt harder. On her birthday, of all days, Eliana was admitted for a “tune-up” because of difficult blood pressures and fluid. What was meant to be a quick stay left us with new concerns about how well her dialysis is clearing. Since then, her labs have continued to show challenges — we’re still working hard to get her BUN and phosphorus under control. The poor clearance has her feeling pretty crummy lately: tired, achy, lots of stomach pain, and just overall “ugh.”
And yet, even on those tough mornings, I still see her summon the strength to get out the door to school. She amazes me with her resilience, even when I know she doesn’t feel her best.
Looking ahead, I continue to hold onto hope for the future. One possibility that encourages me is the DISOT procedure at Stanford. Unlike traditional transplants, it offers the chance for patients to live without a lifetime of anti-rejection medications. While Eliana’s case is complicated by the BK virus, I’m preparing to talk with the Stanford team very soon to learn if this could be the right path for her and what next steps might look like.
For now, we’re taking things one step at a time — balancing school, family, and the constant work of managing her health. Thank you for walking alongside us, for caring about our girl, and for giving us strength when the road feels heavy.
With love and gratitude,
💜 Arielle
