Buckle up for a long update…

We are currently on day +26 (26 days post transplant) and Blakely still has not engrafted (accepted Austen’s stem cells and are growing them on her own). Typically a child engrafts days +14 to +21.

A few days ago Blakely was still experiencing vomiting, diarrhea, gas, and stomach pain. So the doctors did an x-ray of her tummy to make sure her NG tube was in the right place, sometimes if it’s in the wrong place it can cause issues. Instead they found gas trapped in the walls of her intestines, Pneumotosis. She is now NPO for a week meaning no food or drinks at all by mouth for the next week. This condition can be caused by infection so they also took blood for cultures.

The labs came back positive in one of her central line lumens but not the other right away so we thought maybe it was just a contaminated sample since she wasn’t experiencing fevers, fast heart rate, or anything! But unfortunately after another culture draw they found the infection in both lumens. The infection was positive for a rare bacteria that is typically found in our gut, but has leaked into her bloodstream.

We are hoping we caught this early and can be treated with the 2 antibiotics she is now on. If cultures in 2-3 days come back negative it will show that the antibodies are working. If not we will have to re-evaluate.

But wait that’s not it! Every Monday they test for viruses in her blood. This week they found she was positive for HHV6, a virus that typically lives dormant in our body but can be triggered during a bone marrow transplant. HHV6 can suppress the bone marrow, not allowing it to grow. But we really won’t know until we perform a bone marrow test to see if it’s there as well.

Blakely will go under for a bone marrow aspirate on her birthday 7/11. We are hoping this test will bring us all the answers we are looking for. So many unknowns in the future, but we ask you to continue to pray for Blakely’s health.

We could use all the prayers and good vibes that Blakely’s blood infection will clear, her stomach will heal, and that we can get the best results possible from her bone marrow aspirate.

So much is going on right now, but we hope she will be feeling good on her birthday 7/11 so we can party hard and spoil the heck out of her!! Wear your Blakely shirt or orange to support Blakely on her big day, her birthday and bone marrow testing day!

I am putting together a big virtual birthday card for Blakely. If you’d like to record a quick video of you saying happy birthday, feel free to message or text it to me ASAP.

We appreciate every single one of you for following along our journey, sending us so much love, good vibes, thoughts and prayers! Your support means the world to us and we can feel it!! Thank you!!