In early October we all got the big virus that shall not be named. Joshua and I had a medium go at things, while the kids had a mild couple days of low fever and fatigue. Joshua and I both experienced a bit more with 3+/- days of significant fatigue and headache. Luckily, his picked… Continue reading A virus, or two & Halloween.
Category: General Cancer
Only if we help, shall all be saved
Only if we understand, will we care.Only if we care, will we help.Only if we help, shall all be saved.-Jane Goodall A couple of notes for the reader: The Emily Whitehead Foundation was founded in honor of Emily Whitehead, the first pediatric CAR T-cell therapy patient. This Emily, referred to as simply “Emily," is not… Continue reading Only if we help, shall all be saved
Beaudin L. #1
Beaudin and I waited in line to meet Dr. June. He is one of the brilliant doctors behind CAR T therapy and, as far as Beaudin cares, is a celebrity based on the documentary film we got to view the night before the ball. Many families wanted to meet him and as such short queue… Continue reading Beaudin L. #1
Preparing for a Ball
I waited until three days before we left for Philly to come to terms with the fact that I would have to find something to wear to my first ever ball. It's one of my worst traits, this specific variety of denial. I despise shopping, DESPISE, so, sure, I had poked around one local store,… Continue reading Preparing for a Ball
Believe Ball 2022
This weekend we attended the Believe Ball put on by the Emily Whitehead Foundation (EWF). As I have mentioned in previous posts, the EWF is a large part of why we were able to get Beaudin connected with CAR T therapy as a path through relapse. I suppose I shouldn't say it's the only reason,… Continue reading Believe Ball 2022
Rebuilding & reckoning: where to go from here
Sometimes, well most of the time, I start writing exactly where I left off. And by left off, I mean left off of the train of thought in my own head. How is it all you keep up? Alas, you keep coming back. Or something. I don't even know how many of you come back.… Continue reading Rebuilding & reckoning: where to go from here
Intoxicating Trauma
Sweet Emily, Part One I keep meaning to write about it. The composition swirling around in my head every time I notice something that reminds me of her, of it. But there is something about trying to force into words the experience of a child's funeral that feels utterly impossible. I think I'd start with… Continue reading Intoxicating Trauma
It’s hard to convey, a CAR T essay
Today the kids are back at school. Every last one of them. Praise Be. If you've been here a minute you know that we have been here, there, and everywhere as far as school goes. Starting at one school, leaving because of mold, homeschooling, then relapsing and falling into the gracious hands of our local… Continue reading It’s hard to convey, a CAR T essay
Mozzies
This weekend Selah sat outside all afternoon, playing with her new water beads and was eaten up by mosquitos. I would say "eaten alive," but I said that in front of her later that evening when showing the bites to Joshua and she was quite take aback by the mental image. She's got the genetics… Continue reading Mozzies
Verified.
We have to get Beaudin a COVID test for his procedures at CHOP. The procedures can happen, positive or not, but if he is positive they have to provide a negative pressure room which is in a different part of the hospital. Normally, we go to Walgreens the day before our flight. But today when… Continue reading Verified.
The Heavy Wait 