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
Author: summerofsilence
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)
Heavy is the Head
I imagine all the patients at the Believe Ball felt like royalty. Beaudin did. Each of us got to wear a "CAR T FAMILY" button, and the patients wore their own badge of honor: "CAR T PATIENT." Multiple times throughout the evening I saw people walk up to Beaudin and shake his hand, remarking, "It… Continue reading Heavy is the Head
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
Yet another trip to Philly- Send us
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
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.
Christmas Spreadsheets- A Happy Place
Once a year I write about something that isn't pediatric cancer or the grief and gratitude that surrounds it. Today is the day, lucky you. I'm laughing as I proof read this draft because I don't have any category for things that aren't.....dire. New category: ramblings. It's that time of year. The time that I… Continue reading Christmas Spreadsheets- A Happy Place
The Well-Adjusted Sibling- Part 3
**This post contains side by side photos that are best viewed from a computer or iPad.** 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… Continue reading The Well-Adjusted Sibling- Part 3
The Heavy Wait 