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…
Keep readingDear 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…
Keep readingHeavy 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…
Keep readingOur 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,…
Keep readingYet 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…
Keep readingFlying 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…
Keep readingHuCART: 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…
Keep readingA 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,…
Keep readingChristmas 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…
Keep readingThe 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…
Keep readingThe (well?) adjusted sibling- Part 2
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.…
Keep readingThe 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…
Keep readingA 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…
Keep readingOnly 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…
Keep readingBeaudin 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…
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