Jude watches out the window as the plane gains speed for take-off. "Beau! Beau!" he grabs his arm, "We are about to lift off!" "I know, Jude, I have done this before," Beau says tenderly, but he turns and smiles at me. I told Beau last night that Jude was going to be excited, and… Continue reading HuCAR T: 18 month follow-up- Living Jude’s Best Life.
Category: Cancer Siblings
Long-Term Follow-up and a new companion
I debated on that title for hours. I mean, the audacity to consider putting that in print. I reminded myself I can always go back and edit it and so I finally just hit, "publish". This blog is more of a place holder than a printing press, I remind myself over and over. So fine,… Continue reading Long-Term Follow-up and a new companion
Dear Zach. An Update on Beau (& Jude)
Once every six months, or so, I write a letter to the Fellow that Beaudin had during the first 2 years of his treatment. The Fellow moved on from our hospital around when Beaudin began his trial at CHOP. Below is an embellished version of my recent correspondence. I sent a fraction of what is… Continue reading Dear Zach. An Update on Beau (& Jude)
Our Christmas Baby
Jude was born on December 25th and it seems we are forever trying to make-up for the short end of that stick. Of all the kids, why did our middle, who already has the greatest chip on his birth order shoulder, get the worst birthday too? We always buy him separate gifts, as advised by… Continue reading Our Christmas Baby
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
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
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
The Heavy Wait 