What a year! Our life has been completely turned upside down by this disease this year, and I’m not sure we’ll even understand how much things have changed until we can look back on it. We began the year with … Continue reading
We’ve now gone 30 days since Day +100, and things continue to slowly improve. Our last few visits have seen Zoe’s WBC counts between 5.5 and 6.0, holding fairly steady. That puts her in the low normal range, and she … Continue reading
If you haven’t seen it yet, please check out the most recent update on Zoe — she’s had a big week. We’ve reached our biggest milestone along the way to being able to say we’ve beat this thing, the 100 … Continue reading
It’s been an incredibly long year. We’ve largely set aside our lives as we turned our focus to seeing our newborn through a terrible, rare and unforeseeable disease and all of it’s consequences. When we began this journey, I honestly … Continue reading
Today’s clinic visit brought interesting news, there was talk for the first time about a release date. Release at this point means being allowed to return home and switching our long term care to Wake Forest University Hospital (Brenner). They … Continue reading
As most of you know who have checked in with us at one time or another, Zoe has been on steroids for most of her life at this point. She gained a great deal of weight pre-transplant due to them, … Continue reading
Zoe had a great day at clinic — or is having, I should say. We’re still here, getting the last of her Monday infusions. WBC count was at 2.4, so she did get GCSF again, but as I mentioned previously … Continue reading
We’re still waiting on the chimerism results. It’s a test that they like to discuss, and since results were not expected until this afternoon, we won’t hear about them until Monday. Crossing fingers that we’re at 100%. Dr. P was … Continue reading
Not much has changed for Zoe, which is exactly what we want. Her counts remain solid, her WBC is holding at 4.2 as of today, though she did have GCSF on Friday. In terms of a trend she seems to … Continue reading
I was walking through the children’s clinic wing of the hospital a couple days ago with Maya on the way to drop off labs, and the thought occurred to me: I don’t know what day + we are anymore. I … Continue reading