Unfortunately, in the last couple months two acquaintances have reached out with the same question, "Someone close to me has just found out their child has leukemia. What do I do? What do I say? How can I support them?" This is what you can do. Establish Rank & File Understand who the front line… Continue reading “Sorry,” is the first step, then “how can I help?”
Dear Beau, When you were diagnosed, one of my biggest worries, for us both, was your fear of needles. You had so much fear over them that even the most simple blood draw would require many adults holding your body against your will. Actually, I recall a moment early-on, one of the first times we… Continue reading Dear Beau, on the day of your last L.P.
In January we celebrated Selah's birthday at her Waldorf preschool. I was invited to watch the ceremony and as soon as I walked in and saw her, I was choked up. She was adorned with a crown and cape and invited to circle round a centerpiece of candles as we all sang (to the tune… Continue reading God willing. This is the end.
Dates for CarT in Philly. Who is coming, who is staying, and why I can't stop, won't stop writing first drafts.
How is it that treatment was meant to end and now CarT cell therapy begins on the exact same day? Read more.
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.
Consultations and baseline measurements for the upcoming t-cell collection. A long, long hospital day.
Update 1/4/21- Apheresis team consult and vein discovery and lots of unapproved snacks.
Read about our day meeting the apheresis nurses.