When we were in Philadelphia in August for Beaudin's 12 month post-HUCART tests we discussed with the team the next time we would need to come to Philly. They said that because he hit the 12-month mark without disease recurrence, the next time they would need to see us would be at 18 months (February… Continue reading Yet another trip to Philly- Send us
Category: Leukemia
Flying Mouse- Special Delivery
Torben Khulmann is an author and illustrator who Jude and I came across last year and have fallen in love with. He writes historical fiction about a mouse that makes discoveries just ahead of the inventors that history teaches us about. Edison, Lindbergh, Armstrong, to name a few, had their ways paved by a little… Continue reading Flying Mouse- Special Delivery
HuCART: Month 16 results or something.
All I want to do is publish this damn post. And every other damn post I've been (mentally) composing for weeks now. But each time I open my laptop- I write a bit and link a bit, and search around the site to link some more and inevitably find myself reading a post from who… Continue reading HuCART: Month 16 results or something.
A bad virus, there is so much going around.
We've been sick since October. I thought maybe I would throw that out as hyperbole, but then I reviewed my last couple posts and, my God, it has, in fact, been virus on top of virus. I suppose the same can be said for most of you. I've seen the headlines, 'We’re living in virus… Continue reading A bad virus, there is so much going around.
The Well-Adjusted Sibling- Part 3
Read Part One here, and then Part Two. Her eyes were wide as dinner plates when she realized what I was asking her. She was being invited to come along to Beau's clinic visit, she was going to get to go to the hospital. "Yes, yes I want to come," she said and immediately ran… Continue reading The Well-Adjusted Sibling- Part 3
The (well?) adjusted sibling- Part 2
Read Part One here. Feeling pretty damn proud of myself right about now. Why, you ask. Oh, well I just stopped my freefall down the black hole of despair. Clawed my way right out. Closed the tab and opened a new one. You see, yesterday I wrote about Selah visiting the hospital and I was… Continue reading The (well?) adjusted sibling- Part 2
The Well-Adjusted Sibling- Part 1
The last time Selah was at the Children's Hospital, she was pulling on every single cord connected to Beaudin's cancer ridden body while the doctor told us that they had finally confirmed it was, in fact, leukemia. She was still nursing and we had been having a grandparent deliver her to the hospital a couple… Continue reading The Well-Adjusted Sibling- Part 1
A virus, or two & Halloween.
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.
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
The Heavy Wait 