Here for an update?

Hi.
Thanks for checking-in. I’m fine, we’re fine, everything’s fine! In truth, we are terrible, thanks for asking.

Ok, but seriously, if you want a deeper dive than that, feel free to check out the latest Daily Dose update!

I post here to keep friends, family, and new friends of the internet up-to-date on the minutia of our life with cancer.

Month three results.

It’s all clear. All good. All what we want. No leukemia in his spinal fluid. No leukemia in his bone marrow. No b-cells in either. No leukemia in the MRD (minimal residual disease). Next Gen Sequence is still outstanding but…

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The dentist and the ram.

I hadn’t expected to cry while cooking up lunch yesterday. I guess if I am honest the feeling, the hot tears, are always only a couple of thoughts away. Like the other day at Ozo when I heard the gentleman…

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A supportive kitchen floor and a shopping spree.

After posting my dark room post a dear cancer mama friend asked how I was doing with the one year anniversary of Beau’s relapse coming up. At the moment, fresh off a productive writing session and post publication, I was…

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Seasonal Jammies & Month 2 Results

Thanks for indulging my creative side with my last post. Such different content than the cancer side of things, so different in fact that I felt immediate shame about creating and posting it. What business do I have being carefree…

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These are a few of my favorite things…

In continuing with my amazingly boring, mundane experience I have been cleaning out my kids rooms. After a full summer, then a full Philadelphia, I haven’t been alone in my house since May. And for any moms out there- you…

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Currently: October

Please enjoy this break in dreary cancer content while I review the most *basic* fall month on record. Praise be that I have almost nothing to report, except my out of proportion joy at the simple things we have been…

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Canaries in September.

Each September the info graphics start flooding my Facebook feed. As though they finally have an excuse to scream these statistics at the top of their lungs, all my cancer mom friends fill their pages with data on childhood cancer…

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HuCarT Day 28 results

On Day 28, Beau had a bone marrow biopsy and a lumbar puncture. These tests yield 4 test results: 1.) Review of cells in spinal fluid. 2.) Review of cells in bone marrow. a. Reviewed by pathologist under a microscope.…

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HuCart Day +20: Mini golf and school.

As mentioned in our last update, things were pretty hard for a hot minute. The trauma of it all is not helped by siblings being worried about their brother, and their brother crying for them to “go away” every time…

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HuCarT Day +15: Hospital overnight and confusion.

The morning after posting the last update we took Beaudin to the ER with a fever and severe headache. The fever had been brewing through the night and finally, come morning, shot up at 101.9 F requiring an immediate trip…

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HuCarT Day +4: Headaches and an orchard.

When Beaudin got CarT back in March, he didn’t have any sign of symptom of a reaction until Day +5, at which point, he had a terrible headache and decent fever for about 12 hours. That was it. His inflammation…

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And so we begin again. HuCarT Day -7

Dear Beau, All your friend’s parents are posting first day of school pictures. I was thinking of taking a picture of you leaving this morning. I imagined having you hold a chalkboard sign that read “Back to Chemo.” Instead you…

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A 27-hour road trip. Denver-Philladelphia.

The other day one of my best friends asked if we had made it to Philly, as the night prior I had told her we were leaving for Philly [tomorrow]. My reply, “This questions makes me wonder if you don’t…

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A long day at the hospital (dental work)

Yesterday we left for the hospital at 7:08am and arrived back into our garage, after an unexpectedly long day, around 6:11pm. As it turns out, chemotherapy melts tooth enamel, how unfortunate. If you couple that with children’s already thin enamel,…

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Road Rage

To the guy who flipped me off merging on to the toll road this morning,  I’m sorry that I wasn’t paying close attention to the merging lanes. You’d think after driving this route, this many times, that I’d know the…

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HuCar T Day -33: Plans for Philly

We got our dates for Philly.  Yesterday I was driving, mind wandering, thinking, “Crazy to think that everything will turn on a dime when that call comes in.” And then two hours later, that call came in. Cells are in…

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A Quick Trip to Philly- Part Two

Read part one here. Check back for part three, four, five- I mean, who knows how long I’ll go. Less than 48-hours we were back in Denver and my mom was driving us home from the airport. I checked the…

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A Quick Trip to Philly-Part One

It’s been over two weeks since our trip to Philly. The cliff-hangar where I told you all that we were going to check and see if Beaudin’s cancer had returned and then went radio silent. We found out the results,…

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Vic Gulas and Gram

When I was in college I spent a lot to time doing the following: Partying, being hungover, and helping my grandma. I know, I know, one of these things is not like the others, but that was me. I partied…

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Bedtime Treatment Conversations

His room was already dark, which for 9:30pm on a summer night felt early. It had been a hard day, everyone had been crabby. The risk of waking him up overshadowed the fact I should leave well enough alone and…

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Humanized CAR-T and late summer in Philly.

Ok. It’s 6am and my search history so far has been around the topic of humanized mice protein and clinical trials in Seattle, Philadelphia, and anywhere in between. It’s going to be a lively Saturday to say the least. For…

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An end of the year “thank-you” note.

This spring I heard a great idea for end of the year teacher gifts. Instead of gifting a coffee gift card or candle, write a letter to the Superintendent and/or principal detailing your gratitude for the teacher. I thought this…

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Car T Day +58: B-cell Return.

Hi all, wanted to update, but haven’t had the words or energy to put in to a full post. But after a couple of personal texts about results I thought I would just post this real quick. Beaudin’s b-cells are…

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A new nanny and a week of illness.

I have locked myself in my room. I have one million things to do and by “one million,” I mean to say that I have four things that I actually need to do, and 999,996 other things that feel like…

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Philly Magic Gardens

Philadelphia’s Magic Gardens (PMG) is an immersive mixed media art environment, a space that is completely covered with mosaics. It was created by artist Isaiah Zagar who used handmade tiles, bottles, bicycle wheels, mirror, and international folk art. He used…

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Survival rates and percentage math.

When your child is diagnosed with acute lymphoblastic leukemia you hear that it’s the “good” cancer in that it’s EFS (event free survival) is upwards of 94%. And that helps you find some footing in the sinking sand because in…

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Car T Day +24: Family Reunion

Beaudin’s ANC is 2000. He has not had an ANC this high since January of 2019. Any cancer parent reading this understands, 2000 ANC is *high*. We’ve been trained for the last two years to watch this number closely and…

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A List of Gratitude and a Loathe of Grub Hub

I just spent 128 minutes on the customer service chat feature of the Grub Hub app trying to figure out why Joshua can’t access my account from his phone. I wouldn’t consider myself a technological wizard by any means, but…

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CAR T Day +10: Meemaw visit and swap home.

Before this Philly circus started Joshua said he thought I would need to tap out at two weeks but could probably eek out three. I found this offensive because obviously I could do ABSOLUTELY anything I needed to forever because…

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About Me

Hi, I’m Lillie. Previously a magazine editor, I became a full-time mother and freelance writer in 2017. When I’m not spending time with my wonderful kids and husband, I love writing about my fascination with food, adventure, and living a healthy and organized life! Read more

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