I have locked myself in my room. I have one million things to do and by “one million,” I mean to say that I have four things that I actually need to do, and 999,996 other things that feel like a great way to occupy myself while I run around my house screaming, “I haveContinue reading “A new nanny and a week of illness.”
Waiting for a CarT reaction, mild fever, mild headache, and a softball game.
What we did this weekend and a thank-you!
There feels like so much to write and yet nothing to say. I’ve tried to write this update a couple times and find myself all over the place. There is a lot happening on the schedule and even more emotionally. I want to capture it all. Things have been very busy here. We hit theContinue reading “Daily Dose: March 25th, 2021”
We are gearing up for our time in Philadelphia. And are really excited to get this show on the road! Many of you have asked if you can send us a care package, or offer other support during our time away from home. If you had asked me two years ago I probably would haveContinue reading “Snail mail & gift cards”
In January the boys started attending a local public school. I keep meaning to write on that, update the masses about our pivot from homeschool to public school, but haven’t yet. So I will dive right in here to detail how well things are going. Both boys have teachers that are saints. Jude’s teacher actuallyContinue reading “Daily Dose: March 16, 2021”
Dates for CarT in Philly. Who is coming, who is staying, and why I can’t stop, won’t stop writing first drafts.
Back at clinic in Colorado after signing on to the CHOP study. Maintenance chemo and a bit of crying to the doctor.
Exciting update on Car T treatment, and 2021 being the year that this all ends.
Update on T cell apheresis day at Children’s Colorado.