On September 1st, after being home for less than 48 hours, we had to bring Skylar back to the hospital. She had been up all night crying in pain, and I just knew something wasn’t right. When we arrived and I lifted her out of the car, she had a massive blowout. I set her back down, and bloody stool continued to run from her diaper. It was clear her body was telling us she needed help.
When she was checked in, the doctors noticed she was also struggling to breathe, and they quickly discovered she had pneumonia.
Skylar’s Birthday in the ICU
On September 3rd—her 5th birthday—the team decided to start her on oxygen. Around noon her breathing suddenly became gurgly, and things quickly escalated. She was rushed down to the Intensive Care Unit (ICU) after she began coughing up blood. Skylar was intubated and placed on a ventilator to help her breathe. During the procedure, they were able to suction a significant amount of blood from her lungs.
A Complicated Diagnosis: TMA, GVHD and Adenovirus
After several days of sedation, labs, tests, and scans, the doctors determined that Skylar has Transplant-Associated Thrombotic Microangiopathy (TMA).
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What is TMA? TMA is a serious complication that can occur after a bone marrow transplant. It causes small blood clots to form in blood vessels, which can damage organs and lead to a dangerous drop in platelets (the cells that help stop bleeding).
Skylar also tested positive for adenovirus in her lungs, which adds another challenge. The combination of low platelets from TMA and infection in her lungs caused uncontrolled bleeding. Without enough platelets, her body couldn’t stop the bleeding on its own.
Treatment Plan
The doctors have started Skylar on steroids to help calm both the infection and the TMA. She is also receiving Eculizumab, a highly specialized medication designed to block part of the immune system that drives TMA. This treatment can reduce blood vessel damage and give her body a chance to recover.
On a positive note, Skylar’s Graft-versus-Host Disease (GVHD) has shown improvement—a much-needed piece of good news.
Small Signs of Progress
As of today (September 6, 2025), Skylar is still in critical condition, but she is stable. Although there is still bleeding in the stomach and lungs, the medical team was able to lower her PEEP (Positive End-Expiratory Pressure—a ventilator setting that helps keep her lungs open, and reduces bleeding) from 12 to 10. Her oxygen requirement has also decreased from 60 to 30, which means she’s making small but meaningful improvements.
She has also been started on Tranexamic Acid (TXA)—an inhaled medication that helps stop bleeding in the lungs by supporting the blood clotting process locally.
The Road Ahead
We expect Skylar will remain in the ICU for a few more weeks as she continues to heal. The plan, once she stabilizes further, is to transition her back up to the oncology floor.
We are overwhelmed with gratitude for the prayers, support, and love that continue to surround Skylar and our family. Every step forward feels like a small miracle, and we know she is fighting hard.
Thank you for standing with us in this journey.
