Skylar is doing fairly well overall following her bone marrow transplant, but this past week has brought some difficult challenges.
She’s currently on a medication called tacrolimus (tacro), which helps prevent her immune system from rejecting the new bone marrow. Unfortunately, her body is having a hard time metabolizing it, which puts extra stress on her system. Her medical team has been working hard to flush the excess tacro from her body in order to stabilize her blood pressure and protect her liver and kidneys from potential damage.
To make things even harder, Skylar caught norovirus this week. Since her immune system is suppressed, she won’t be able to fight it off like most people. Her doctors have told us she will likely have it for several months, and she’ll also remain contagious during that time, which is especially concerning given her fragile condition. It’s already making her violently ill, with painful cramping and ongoing severe diarrhea. Because of the risk of spreading the virus to other patients on the floor, everyone who comes in and out of her hospital room now has to gown up and follow strict precautions.
In the middle of all of this, we had a small but meaningful bright spot: her caregiver, Loreana, came to help.
Skylar was absolutely thrilled to see a familiar face. While they sat together on the couch, Skylar would periodically glance over, smile at Loreana, and make sure she was still there. It was a gentle, beautiful reminder of how deeply children crave comfort and security during uncertain times. Skylar loves snuggling with Loreana, and we’re so thankful she could be here.
One thing we never could have anticipated, however, is the trauma response Skylar is already showing from just a few weeks in the hospital. She now associates everyone in scrubs with pain or discomfort and often believes they’re coming to make her sicker. Even small daily tasks—like brushing her teeth four times a day, checking vitals, administering medications, or now, changing her diapers and cleaning her up due to the constant blowouts—can cause her to go into panic mode.
Skylar has had several panic attacks, especially when she’s startled by a nurse approaching from the side of her bed. Due to her vision impairments, she often can’t see them coming, which makes the situation worse. She responds better to familiar faces, and we’ve learned that if nurses enter the room and gently tap her shoulder, stand in her line of vision, and sign or speak clearly about who they are and why they’re there, she’s far more willing to cooperate. Building trust makes all the difference.
Despite everyone’s best efforts, the trauma has started manifesting physically. Her panic attacks have become more frequent and more intense. We’ve started Clonidine to help ease her responses when nurses enter the room. As much as it hurts to say, Skylar has already headbutted one nurse, kicked someone in the chest, and kicked another in the jaw. Just this morning, during a particularly rough moment, Skylar panicked while Loreana was trying to clean her, scrambled up and over her in distress—and ended up getting poop on Loreana’s face. These moments are heartbreaking for everyone. Kudos to Loreana for handling the situation with grace and understanding.
We are so grateful for the compassion and patience of the nurses and staff who are working hard to adjust and support Skylar in the gentlest ways possible. They’re truly incredible, and we see their effort and kindness every day.
This week has reminded us of just how tough and tender this journey really is. Skylar is fighting so hard, and we’re doing everything we can to help her feel safe, loved, and comforted in the midst of it all.
Thank you for continuing to hold our girl in your thoughts and prayers. Your love means everything.
With love,
The Hubbard Family
We have started volunteering at the local Ronald McDonald house in Skyler’s honor. Thinking of you guys!–Annaliese